tag:blogger.com,1999:blog-6605343365589007762024-03-13T12:54:28.327+00:00Ledderhose Disease BlogMy experience with Ledderhose disease aka plantar fibromatosis. This information is not intended to replace your doctor. Information on this blog is provided for informational purposes only. You should not use the information on this web site for diagnosing or treating.GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.comBlogger397125tag:blogger.com,1999:blog-660534336558900776.post-4262493573931063882023-12-28T17:00:00.004+00:002023-12-28T17:00:55.553+00:00It can get better<p style="text-align: justify;">I haven't posted yet in 2023 and wanted to remedy that. It has been a very busy year, mostly with running! I have discussed my running before but this year it has gone to another level. A Ledderhose patient that had to use a walking stick and weighed at least 19 stone at one point (probably more) is now one of the better runners in his area. I will try and make sure I post about my <a href="https://unrunningcoach.blogspot.com/" target="_blank">running elsewhere</a>.</p><p style="text-align: justify;">I am sure this won't mean much to people on here but I have broken my records for 10k, 5k and the half marathon with a sub 38, sub 18 and 1:25 (on a tough course) during this year. I have come 1st!!! at parkrun 4 times this year and when racing it (it is a run not a race but that doesn't stop us) have not been outside the top 10. </p><p style="text-align: justify;">My proudest achievement this year is running 2500 miles, a few years ago I attempted to run 2191 miles to raise money and awareness of the British Dupuytren's Society but I failed due to injury. This year I have surpassed 2700 miles and just had an amazing year. I won't rave about my running any more, I will post about that elsewhere but needless to say that if you are currently in pain with Ledderhose there can be a light at the end of the tunnel and people similar to yourselves have found a way out. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZVFiISiTWCERHiUPrdhsyRFfiP-ViJT5h6-eakz16gYe61ACdfL2ESXLcgmFFrvIBho5Yw9mGjF-IilDn-xhSk6iGyDy8LpEYALNuR2uZz8wuPV3ij9u7Jnp2GPtF6IOtAt6A5qtB4LfH0ce_SvaJztF3RGWCztw4VGgDjbcx-gihXwcgAKoYvunCTkg/s720/result%20(1).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="542" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZVFiISiTWCERHiUPrdhsyRFfiP-ViJT5h6-eakz16gYe61ACdfL2ESXLcgmFFrvIBho5Yw9mGjF-IilDn-xhSk6iGyDy8LpEYALNuR2uZz8wuPV3ij9u7Jnp2GPtF6IOtAt6A5qtB4LfH0ce_SvaJztF3RGWCztw4VGgDjbcx-gihXwcgAKoYvunCTkg/s320/result%20(1).png" width="241" /></a></div><br /><p style="text-align: justify;"><br /></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-13060410200694820292022-10-25T16:41:00.004+01:002022-10-25T16:41:35.893+01:00Survey closing soon<p><span style="font-family: arial;"><span style="background-color: white; font-size: 15px; text-align: justify; white-space: pre-wrap;">Hi Everyone, the survey is coming to an end soon. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it. </span></span></p><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="text-align: justify;"><span style="font-family: arial;">Survey - <span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl gpro0wi8 py34i1dx" href="https://ledderhose.blogspot.com/2022/05/ledderhose-patient-survey.html?fbclid=IwAR3W9bAudUILl1jddt1AHuxrSHHVXYXdNQD6VhrtsKisS2qH_vDbojAdkzQ" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">http://ledderhose.blogspot.com/.../ledderhose-patient...<br /></a></span></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="text-align: justify;"><span style="font-family: arial;"><span><a style="cursor: pointer;" tabindex="-1"></a></span>Please do take part and help gather some data on Ledderhose and its treatments. </span></div></div>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-82544919384211288032022-09-12T15:33:00.002+01:002022-09-12T15:33:23.853+01:00So I finished 1st at parkrun!<p style="text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">So an update on me and where I am at. On 10</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">th</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> September I ran my 212</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">th</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> parkrun, yey go me, but this one was different to all those that came before as I somehow came 1</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">st</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. parkrun is a run not a race but there is still something awesome about coming in 1</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">st</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> and something that has never happened to me before. Honestly, I got lucky, out of the 496 Eastbourne parkruns that have taken place only 10-15 have had slower “winning” times. </span></p><span id="docs-internal-guid-77f2ba82-7fff-68ee-496e-7f45ade530fe"><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">On reflection do I really care? It was the slower summer route and hot, and I had run 55 miles this week so was on tired legs. I did get a PB on the route and you can only beat who is there. Still I am chuffed and just have to remind myself that 10 years ago I was using a walking stick because of Ledderhose disease and 8 years ago I was basically twice the size I am now.</span></p><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">So there you go, a former 20 stone, Ledderhose patient that was fasted with no carb managed to be the first finisher at a parkrun. Wonder what the longest number of runs it is to take someone to get the 1</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">st</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> place token, or who else with Ledderhose has ever managed it? </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNTfbD46VdBwjPsDWPyyqA-_xIn4I8YZKS4X5dkYd-O7kibMpNaEqwiyN9zuXugKIac6Bs4NLR8qymeKIvZvNArnlhalhG2lrAbU0lNgOlaZKGNVmW5fef9Ez58j2cfw0YWhYeP9sKoYaAJWVPpFz1M7gzqPm8LakpZqL17SfS1j57bdJzhVN-oaYW/s3264/PXL_20220910_082452975.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNTfbD46VdBwjPsDWPyyqA-_xIn4I8YZKS4X5dkYd-O7kibMpNaEqwiyN9zuXugKIac6Bs4NLR8qymeKIvZvNArnlhalhG2lrAbU0lNgOlaZKGNVmW5fef9Ez58j2cfw0YWhYeP9sKoYaAJWVPpFz1M7gzqPm8LakpZqL17SfS1j57bdJzhVN-oaYW/s320/PXL_20220910_082452975.jpg" width="240" /></a></div><br /><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><br /></div><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><b>In case anyone is interested in what happened: </b></span></p><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It was basically a solo time trial. I started at the front with several others that are normally around my time and got to the first corner, 100m or so in, I am normally at least 10th by this point but was in the lead and there was one guy close behind. The guy behind commented that at least someone knew where they were going so guessing it was the tourist who ended up 3</span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: 0.6em; vertical-align: super;">rd</span></span><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. I held back through the first k and according to my watch I wasn’t even on for sub-20, often the case on this route as the start is grassy with lots of turns. Around 2km we reached the dip into an underpass, and I decided to pick up my pace and see if I dropped those behind me, up to now I could still hear them close. </span></p><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">It worked and I dropped him/ them and from that point was just running scared that someone would catch me, was quite surreal being at the front, only ever happened once before in 2016, only for about 500m and I finished 3rd. With around 800m to go you loop back past the start / finish line and I shrugged to the volunteers as if to say, “how is this happening?” the response was “Go on Gary you Legend”. I kept my lead and took a sneaky look back when I reached the last corner (same as the first one) and knew I had a big enough advantage that it was in the bad, I tried by hardest to sprint to the end and got finish token 0001. Was nice as all the volunteers and other faster runners know my background and were all so thrilled for me.</span></p><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Not going to lie, I really enjoyed it and was a little emotional when thinking back to everything I have been through. </span></p><p dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgaBaelJQQUGVF8Xafp4XC4hKqaxXkzyr7suAC3QprAdlRrPXXWvOAzzoQ-N5LamiMvHriDbF0imrggdllQ-pcMGiePYynv4NSQTuY8Bazf6P-HGzW31glwiAzHmOkVxK3zgzAHLcv9uGldSSVewyGwo8infJiJY5f9f2eRmeEp4e-_u9-h7BuWferp" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="544" data-original-width="1523" height="228" src="https://blogger.googleusercontent.com/img/a/AVvXsEgaBaelJQQUGVF8Xafp4XC4hKqaxXkzyr7suAC3QprAdlRrPXXWvOAzzoQ-N5LamiMvHriDbF0imrggdllQ-pcMGiePYynv4NSQTuY8Bazf6P-HGzW31glwiAzHmOkVxK3zgzAHLcv9uGldSSVewyGwo8infJiJY5f9f2eRmeEp4e-_u9-h7BuWferp=w640-h228" width="640" /></a></div><br /><br /></span><p></p><div style="text-align: justify;"><span style="font-family: Calibri, sans-serif; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-83374309581534062312022-08-04T15:56:00.005+01:002022-08-04T15:56:50.097+01:00Survey and Focus Group for US Ledderhose patients<p style="text-align: justify;"><span style="background-color: white; font-family: inherit; font-size: 15px; white-space: pre-wrap;">Hi Everyone, the survey and focus group did not get as much interest as we were hoping. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it. </span></p><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit; text-align: justify;">Survey - <span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl gpro0wi8 py34i1dx" href="https://ledderhose.blogspot.com/2022/05/ledderhose-patient-survey.html?fbclid=IwAR3W9bAudUILl1jddt1AHuxrSHHVXYXdNQD6VhrtsKisS2qH_vDbojAdkzQ" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">http://ledderhose.blogspot.com/.../ledderhose-patient...</a></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit; text-align: justify;">Focus Group - <span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl gpro0wi8 py34i1dx" href="https://ledderhose.blogspot.com/2022/05/ledderhose-virtual-focus-groups.html?fbclid=IwAR0Ksi_-AeZ3Q3OhuJke_uqpu6ZxGRLYnEhpGVmLgDsWAphHsaRharUMe20" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">http://ledderhose.blogspot.com/.../ledderhose-virtual...</a></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit; text-align: justify;"><span style="font-family: inherit;"><a style="cursor: pointer; font-family: inherit;" tabindex="-1"></a></span>Please do take part and help gather some data on Ledderhose and its treatments. Equally interested to hear in the comments why people are not taking part / completing the survey.</div></div>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-89891828330299866502022-05-21T10:38:00.001+01:002022-05-21T10:38:21.123+01:0010 years since radiotherapy started<p style="text-align: justify;">I got a reminder on my phone this morning, it is now 10, yes 10!!! years since I started radiotherapy in Guildford with Dr Shaffer to treat my Ledderhose. It is crazy thinking how much things have changed and although I still look back at those time I have come so far. I was out walking the dog for over an hour this morning and for me this was a lazy Saturday morning as I didn't follow it up with an 8 mile run including parkrun. When I was back suffering with my foot and weighing the best part of 20 stone who would have thought that 10 years later I would fast be approaching 200 parkruns. </p><p style="text-align: justify;">It is safe to say that I still consider radiotherapy one of the best decisions of my life, it was quite literally life changing and so much of my life now would likely be different if I had had surgery instead. In a typical day I run with my daughter on her scooter to get her to and from school, take the dog for a walk or run (or two), often go for a run myself, play badminton not to mention the mundane things like I am the one who does the weekly shop round Tesco, no way would I have nominated myself to do that back when I had my bad foot. Tomorrow we are going on one of our regular trips round Legoland and whilst a day on my feet can cause my foot to ache a bit the next day I can see the joy and happiness on my daughters face and think that without RT we would certainly not be able to go regularly. In fact we go so much she asked for it as the theme for her birthday this year, so it is not just my life that is completely different. </p><p style="text-align: justify;">I will forever be grateful for the support and help my friends and family gave me back then and since. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMLT4H6ofQaksic9hEwqDMch6PNIc-KqG5dRX_brtQ9vp5hHhpRPUmKlr8eBRfRx_4N453CmtXPkgrN3a2XPvqYO0bGhWZkaCh38Ql6zbxccRXZVyT8KF2FUJpU1GATPUWtx2yHyx9xq0X7LSCQ4ROiAz9n3mkvDWg-3WsvGkCOMtJ8XfFSQF3RD4a/s4032/PXL_20220521_063405335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMLT4H6ofQaksic9hEwqDMch6PNIc-KqG5dRX_brtQ9vp5hHhpRPUmKlr8eBRfRx_4N453CmtXPkgrN3a2XPvqYO0bGhWZkaCh38Ql6zbxccRXZVyT8KF2FUJpU1GATPUWtx2yHyx9xq0X7LSCQ4ROiAz9n3mkvDWg-3WsvGkCOMtJ8XfFSQF3RD4a/s320/PXL_20220521_063405335.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmrPGoMvUmO50IQS-9UqWq047PcvyA75Y8tqcFKNPP4JcjJ_n6TiwkaBZUgADFeBKy9vbm3LvnTHSt-ois6yoyoLRO7hyfw5Tgyi2u8zMiu8kRZ885uF1ltNSvt-5OX99VwPkBDYw4u1PWtVbBfqaj4zKu0k-UM5KJ0kE213cPuvJ7h952c97Dbi2/s4032/PXL_20220514_083729444.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmrPGoMvUmO50IQS-9UqWq047PcvyA75Y8tqcFKNPP4JcjJ_n6TiwkaBZUgADFeBKy9vbm3LvnTHSt-ois6yoyoLRO7hyfw5Tgyi2u8zMiu8kRZ885uF1ltNSvt-5OX99VwPkBDYw4u1PWtVbBfqaj4zKu0k-UM5KJ0kE213cPuvJ7h952c97Dbi2/s320/PXL_20220514_083729444.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis2C88iVIm34v84n-1ijaml9fESF9zCuJKA8auDs1LgNc7TWXqvAiaaI9x6iRKDJ4uJZEitX1fosXS-mmuQl65G3GJinNjBsRoB2zdO_OoYzQmNubkQ9vN00Ypm-zG2fJmu3Wyci4lp5vdGd0M7d9UKrI_40jpwfL7XREF_wQstAr2ocGrFVY8NaXU/s4032/PXL_20220513_154025515.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis2C88iVIm34v84n-1ijaml9fESF9zCuJKA8auDs1LgNc7TWXqvAiaaI9x6iRKDJ4uJZEitX1fosXS-mmuQl65G3GJinNjBsRoB2zdO_OoYzQmNubkQ9vN00Ypm-zG2fJmu3Wyci4lp5vdGd0M7d9UKrI_40jpwfL7XREF_wQstAr2ocGrFVY8NaXU/s320/PXL_20220513_154025515.jpg" width="240" /></a></div><br /><p style="text-align: justify;">10 years is a long time, I have lost a lot of people in those years, many of whom helped a lot either by financial and or emotional support during this time but we will never forget that help and the difference it has made to our lives. </p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com1tag:blogger.com,1999:blog-660534336558900776.post-89905221050104595842022-05-11T12:58:00.003+01:002022-05-11T12:58:26.747+01:00Ledderhose Virtual Focus Groups<p style="text-align: justify;"><span style="font-family: Calibri; font-size: 11pt;">Posted in partnership: Would you like to take part in a virtual focus group with people affected by plantar fibromatosis in the United States? ICON plc and Endo Pharmaceuticals Inc. which is conducting research on an investigational treatment for plantar fibromatosis, are hosting focus groups to better understand the experiences of people affected by plantar fibromatosis </span><u><span style="font-family: Calibri; font-size: 11pt;">in the USA</span></u><span style="font-family: Calibri; font-size: 11pt;"> and how it impacts their lives. They are looking for 16 people who are living with plantar fibromatosis. Participants will be offered $200 as compensation. Focus groups will take place in May/June 2022. Please contact Ms. Laura Iliescu, Director of Patient Advocacy, ICON plc at iliesculaura@prahs.com for more information if you would like to take part. </span></p><p class="MsoNormal"><span style="font-family: Calibri; font-size: 11.0000pt; mso-bidi-font-family: 'Times New Roman'; mso-spacerun: 'yes';"><o:p></o:p></span></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-33341673436188682552022-05-11T12:57:00.002+01:002022-05-11T12:57:26.403+01:00Ledderhose patient Survey<p style="text-align: justify;"><span style="font-family: Calibri; font-size: 11pt;">Posted in partnership: Please consider filling out this short survey about your experiences as a person affected by plantar fibromatosis. This survey is being conducted by ICON plc on behalf of Endo Pharmaceuticals Inc., which is conducting research on an investigational treatment for plantar fibromatosis, to better understand the experiences of people affected by plantar fibromatosis in the USA and how it impacts their lives. It should only take 10-15 minutes and you can enter to win one of three ($100) gift card prizes: </span><a href="https://s.surveyplanet.com/0m6ytm4u"><u><span class="15" style="color: #0563c1; font-family: Calibri;">https://s.surveyplanet.com/0m6ytm4u</span></u></a></p><p class="MsoNormal"><span style="font-family: Calibri; font-size: 11.0000pt; mso-bidi-font-family: 'Times New Roman'; mso-spacerun: 'yes';"><o:p></o:p></span></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-17908726739505492812022-05-01T10:32:00.002+01:002022-05-01T10:32:38.014+01:00Anti-tumour necrosis factor therapy for early-stage Dupuytren's disease<p style="text-align: justify;"><span style="font-family: arial;">For those that don't know or remember there has been a very interesting trial taking place for the use of Anti TNF in the treatment of Dupuytrens. The results of the study have now been published a<span style="background-color: white; color: #202020;">nd the complete article can be found here:</span><span style="background-color: white; color: #202020;"> </span><a data-saferedirecturl="https://www.google.com/url?q=https://dupuytrens-society.us13.list-manage.com/track/click?u%3D4c0d7a84aa391b602b86826df%26id%3D8d63560f6b%26e%3D53df4a154d&source=gmail&ust=1651483400280000&usg=AOvVaw0H5RHfu_BoujxGPWuwq-Nh" href="https://dupuytrens-society.us13.list-manage.com/track/click?u=4c0d7a84aa391b602b86826df&id=8d63560f6b&e=53df4a154d" style="background-color: white; color: #007c89;" target="_blank">https://www.thelancet.com/<wbr></wbr>journals/lanrhe/article/<wbr></wbr>PIIS2665-9913(22)00093-5/<wbr></wbr>fulltext</a></span></p><p style="text-align: justify;"><span style="font-family: arial;"><span style="background-color: white; color: #202020;">Overall it appears that the trial was </span><span style="background-color: white; color: #202020;">successful</span><span style="background-color: white; color: #202020;">. The nodules that were injected got softer, and progression stopped. This is potentially very good news for both Dupuytren's and in the longer term Ledderhose patients as long only will it hopefully provide another treatment option for these conditions but suggests that scientists are contining to have a better understanding of the condition. </span></span></p><p style="text-align: justify;"><span style="font-family: arial;"><span style="background-color: white; color: #202020;">Additional there is a short video to explain the trial here:</span><span style="background-color: white; color: #202020;"> </span><a data-saferedirecturl="https://www.google.com/url?q=https://dupuytrens-society.us13.list-manage.com/track/click?u%3D4c0d7a84aa391b602b86826df%26id%3D6539f8a602%26e%3D53df4a154d&source=gmail&ust=1651483400280000&usg=AOvVaw0XST4Rq9JQyLSncKDOFE6e" href="https://dupuytrens-society.us13.list-manage.com/track/click?u=4c0d7a84aa391b602b86826df&id=6539f8a602&e=53df4a154d" style="background-color: white; color: #007c89;" target="_blank">https://youtu.be/jyoUkLiUg4Q</a></span></p><p style="background-color: white; color: #202020; line-height: 24px; margin: 10px 0px; padding: 0px; text-align: justify;"><span style="font-family: arial;">There has been a press release which can be found here: <a data-saferedirecturl="https://www.google.com/url?q=https://dupuytrens-society.us13.list-manage.com/track/click?u%3D4c0d7a84aa391b602b86826df%26id%3D5ac25f0a90%26e%3D53df4a154d&source=gmail&ust=1651483400280000&usg=AOvVaw1bJmUxWrrNN6c0dWf5Pd2a" href="https://dupuytrens-society.us13.list-manage.com/track/click?u=4c0d7a84aa391b602b86826df&id=5ac25f0a90&e=53df4a154d" style="color: #007c89;" target="_blank">https://www.ndorms.ox.ac.uk/<wbr></wbr>news/breakthrough-in-<wbr></wbr>treatment-for-dupuytren2019s-<wbr></wbr>disease</a></span></p><p style="background-color: white; color: #202020; line-height: 24px; margin: 10px 0px; padding: 0px; text-align: justify;"><span style="font-family: arial;">Looking at the results it looks like nodule size and hardness both decreased over time with these injections, both good indicators that the condition is improving with very few adverse issues in response to the treatment. Overall these results look very promising and I look forward to seeing how they progress in the future. <br /></span></p><p style="background-color: white; color: #202020; line-height: 24px; margin: 10px 0px; padding: 0px; text-align: justify;"><span style="font-family: arial;"> </span></p><p style="background-color: white; color: #202020; line-height: 24px; margin: 10px 0px; padding: 0px; text-align: justify;"><span style="font-family: arial;"><br /></span></p><p style="background-color: white; color: #202020; line-height: 24px; margin: 10px 0px; padding: 0px; text-align: justify;"><span style="font-family: arial;"> </span></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-74879295162985561292021-11-12T10:54:00.002+00:002021-11-12T10:54:12.444+00:00New Stuff<p style="text-align: justify;"> I can't say much at the moment but I am hoping that some new work I am collaborating on will be opening up in the new year. It should be a good chance to gathering some information on some patients and to spread the word and information about Ledderhose disease. </p><p style="text-align: justify;">It will be really interesting to see where it goes. In the mean time I am continuing to try and increase the profile of the condition. We had a good catch up with at the BDS recently and Anna has been working hard with Dr Shaffer to create some really good YouTube Content. </p><p style="text-align: justify;">I intend to post a few of these videos, the first is below and is why it might be too early for radiotherapy. </p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="352" src="https://www.youtube.com/embed/92wrnMvgg5c" width="423" youtube-src-id="92wrnMvgg5c"></iframe></div><br /><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-17368159882186681232021-08-21T19:03:00.001+01:002021-08-21T19:03:00.195+01:00Risk Factors for Dupuytrens's<p>Recently a new article was published around the risk factors for Duputren's and I and by extensions Ledderhose? T<a href="https://www.nature.com/articles/s41598-021-94025-7">he article was freely accessible here</a>.</p><p><span style="background-color: white; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;">Rydberg, M., Zimmerman, M., Löfgren, J.P. </span><i style="background-color: white; box-sizing: inherit; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;">et al.</i><span style="background-color: white; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;"> Metabolic factors and the risk of Dupuytren’s disease: data from 30,000 individuals followed for over 20 years. </span><i style="background-color: white; box-sizing: inherit; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;">Sci Rep</i><span style="background-color: white; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;"> </span><span style="background-color: white; box-sizing: inherit; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px; font-weight: bolder;">11, </span><span style="background-color: white; color: #222222; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Oxygen-Sans, Ubuntu, Cantarell, "Helvetica Neue", sans-serif; font-size: 16px;">14669 (2021). https://doi.org/10.1038/s41598-021-94025-7</span></p><p>In summary the article suggests that the 2 metabolic things that are most likely to increase your risk are diabetes and excessive alcohol consumption. Of course the main risk factor is still likely to be some genetic component. I then found another article, also <a href="https://www.researchgate.net/profile/Osaid-Alser/publication/344358976_Nongenetic_Factors_Associated_with_Dupuytren%27s_Disease_A_Systematic_Review/links/5f6bda9d458515b7cf496aa9/Nongenetic-Factors-Associated-with-Dupuytrens-Disease-A-Systematic-Review.pdf">freely available on the following link.</a></p><p>The article is by Dominic Furniss who has close links with the British Dupuytren's Society and has done lots of great work on Dupuytren's in this research at Oxford. This article produced the following table. </p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-EpIStqfAj5o/YRa2VLWgpBI/AAAAAAAAhbg/cD48C_2rfL82l9AsFnzg-UVk2DOD67_rACLcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="800" data-original-width="624" height="640" src="https://lh3.googleusercontent.com/-EpIStqfAj5o/YRa2VLWgpBI/AAAAAAAAhbg/cD48C_2rfL82l9AsFnzg-UVk2DOD67_rACLcBGAsYHQ/w499-h640/image.png" width="499" /></a></div><br /> Nongenetic Factors Associated with Dupuytren’s
Disease: A Systematic Review published by Osaid H. Alser, M.D.
Rachel Y. L. Kuo,
M.B.B.Chir.
Dominic Furniss,
F.R.C.S.(Plast.) in (Plast. Reconstr. Surg. 146: 799, 2020.)<p></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-3116655524972767072021-08-14T10:36:00.002+01:002021-08-15T06:59:13.858+01:00Patient Story - Ledderhose patient from Australia<p style="text-align: justify;"><i style="font-family: inherit; font-size: large;">Today I have some information from a patient in Australia that I connected with on Facebook, they have had surgery and some injections and are hoping for some more injections. </i></p><p style="text-align: justify;"><span style="font-size: medium;"><i><br /></i></span><span style="font-family: inherit; font-size: large;">My name is Janine, I am 48 and live in Melbourne, Australia. I first
noticed a lump on the arch of my foot at the age of 41 and was
referred to a Podiatrist. His advice was to get orthotics, so I had
some orthotics made which worked great for when I was wearing
trainers but they were too thick for any other types of shoes. I was
advised to monitor its size with regular ultrasounds. The first
ultrasound also found smaller fibromas in my other foot.</span><br /><span style="font-family: inherit; font-size: large;">I then took on a new job which involved me wearing high heels every
day which played havoc with my fibromas. I was recommended to visit
an orthopaedic surgeon and he advised to continue with ultrasounds
and track their growth and re-visit him 12 months later. The fibromas
in both feet continued to grow at 0.5cm per 6 months and were
becoming more and more uncomfortable. Plus the one on my right foot
had changed shape from an olive to garlic bulb. </span><br /><span style="font-family: inherit; font-size: large;"><br /></span></p><p style="text-align: justify;"><span style="font-family: inherit; font-size: large;">When I re-visited the
surgeon he recommended surgery to remove the fibroma as the change in
shape could well be an indication of cancer and there was also a very
slim chance that they would grow back. The surgery made sense to me
and so at great financial expense I had the surgery in 2016 to remove
the fibromas on my right foot. Roll on 4 years to 2020, my scar has
given me daily pain since the surgery. It swells when I am sleeping,
calms down after a hot shower and then gives we sharp nerve pain
during the day. </span><br /><span style="font-family: inherit; font-size: large;"><br /></span></p><p style="text-align: justify;"><span style="font-family: inherit; font-size: large;">By 2020 I had noticed that lumps were appearing out
the side of my scar and so I went to see a Podiatrist surgeon. He
told me that I should never have had the surgery and that the
fibromas had indeed grown back and he sent me for an MRI. He gave me
a treatment of cortisone injections for the fibroma and collagen
injections for my very sensitive scar. I was scheduled to have a
further two sessions of the cortisone injections when I discovered
this wonderful </span><a href="https://www.facebook.com/groups/1652149925085536/" style="font-family: inherit; font-size: large;">facebook page</a><span style="font-family: inherit; font-size: large;">. </span><br /><span style="font-family: inherit; font-size: large;"><br /></span></p><p style="text-align: justify;"><span style="font-family: inherit; font-size: large;">I have since provided the </span><span style="font-family: inherit; font-size: large;">Hyaluronidase</span><span style="font-family: inherit; font-size: large;"> enzyme injection information to my surgeon and it turns out that from
February 2022 this will be covered by my insurance and so we have
agreed to delay any further treatment until then.</span></p>
GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com2tag:blogger.com,1999:blog-660534336558900776.post-36397992197663245552021-08-05T16:03:00.003+01:002021-08-05T16:03:38.486+01:00Virtual Dupuytren's Symposium - 2021<p>The registration and program have been released for the next Dupuytren's Symposium and there are some interesting sessions that I am looking forward to attending. </p><p>You can see the <a href="https://dupuytrensymposium.org/scientific-program/">whole program here</a>.</p><p>Highlights for me will be the session on radiotherapy because 1) It worked so well on me and 2) 2 of the papers being discussed are on the treatment of Ledderhose:</p><p style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; color: #444444; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 15.96px; margin: 0px 0px 1.5em; outline: 0px; overflow-wrap: break-word; padding: 0px 0px 0px 30px; vertical-align: baseline;"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; color: blue; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;"><strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Session 4</strong></span>: Wednesday 3rd November, Time: 20:00 UTC (20:00 GMT)<br /><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; color: blue; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;"><strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Radiotherapy</strong></span><br /></p><p style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; color: #444444; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 15.96px; margin: 0px 0px 1.5em; outline: 0px; overflow-wrap: break-word; padding: 0px 0px 0px 30px; vertical-align: baseline;"><strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Keynote: Radiotherapy for Dupuytren Disease<br /></strong>Dr. Richard Shaffer, The Dupuytren’s Practise, London, UK</p><p style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; color: #444444; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 15.96px; margin: 0px 0px 1.5em; outline: 0px; overflow-wrap: break-word; padding: 0px 0px 0px 40px; vertical-align: baseline;">1. <strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">A Randomized trial of Radiotherapy for Dupuytren’s Disease – DEPART</strong><br />J. Martin, Newcastle, Australia<br />2. <strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Radiotherapy in patients with painful Ledderhose disease: a randomised, multicenter, prospective, double-blind phase III trial.</strong><br />A. de Haan, Groningen, The Netherlands<br />3. <strong style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Radiotherapy for patients with Ledderhose disease: long-term efficacy, side effects and patient-rated outcome</strong><br />A. de Haan, Groningen, The Netherlands</p><p>After this I am also looking forward to session 6 which is experimental treatments. Looking forward to getting an update on the anti-TNF treatment. </p><p>It is a shame that the conference is having to be held virtually as last time it was such a great experience meeting up with everyone and learning a lot from all the different people at a single conference. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-dkr05QWCsO4/VWA_9wQNsLI/AAAAAAAAJq4/9JBamarTkdsvdP0Z5g2ekuHKmG9zSE6lQCPcBGAYYCw/s3264/IMG_20150522_130210.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2448" data-original-width="3264" height="300" src="https://1.bp.blogspot.com/-dkr05QWCsO4/VWA_9wQNsLI/AAAAAAAAJq4/9JBamarTkdsvdP0Z5g2ekuHKmG9zSE6lQCPcBGAYYCw/w400-h300/IMG_20150522_130210.jpg" width="400" /></a></div><br /><p><br /></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-7995491755241779342021-08-02T13:22:00.004+01:002021-08-02T13:22:41.276+01:00Collagenase for Ledderhose?<p><span style="font-family: inherit;">I have previously covered the topic of Collagenase injections by looking at various aspects of it including its <a href="http://ledderhose.blogspot.com/2012/03/xiaflex-in-cells-trying-to-help-you.html">use in cells,</a> <a href="http://ledderhose.blogspot.com/2012/07/interview-with-dupuytrens-xiapex.html">interviewing a Doctor</a> that uses it for Dupuytren's and covering the material presented at the <a href="http://ledderhose.blogspot.com/2015/05/international-dupuytrens-symposium-day_23.html">Dupuytren's symposium</a>. Because it has not been approved for Ledderhose I don't have a specific page in detail on the treatments page. </span></p><p><span style="font-family: inherit;">There are a couple of different enzymes that have been trialled to break down these lumps and it looks like Endo are hoping that their product can be an option for Ledderhose. </span></p><h1 style="background-color: white; box-sizing: border-box; color: #373737; font-weight: 400; line-height: 1.2; margin: 0px 0px 10px;"><span style="font-family: inherit; font-size: small;"><a href="https://www.prnewswire.com/news-releases/endo-presents-new-investigational-collagenase-clostridium-histolyticum-data-at-the-american-podiatric-medical-association-annual-scientific-meeting-301344291.html?fbclid=IwAR0bWo4bmce97Vt3lln2_b2-8e950d0o52t6DMAUBzAFa6fOO60E9DcGqOk">Endo Presents New Investigational Collagenase Clostridium Histolyticum Data at the American Podiatric Medical Association Annual Scientific Meeting</a></span></h1><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-36uqHCiAqMQ/YP2J-K_Uz7I/AAAAAAAAhMQ/noAaVEdhULIo_tHdwDhROP11ivyukLw_QCPcBGAYYCw/s1000/collagenase.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="797" data-original-width="1000" height="255" src="https://1.bp.blogspot.com/-36uqHCiAqMQ/YP2J-K_Uz7I/AAAAAAAAhMQ/noAaVEdhULIo_tHdwDhROP11ivyukLw_QCPcBGAYYCw/s320/collagenase.jpg" width="320" /></a></div><br /><div>So what does the article actually say? </div><div><br /></div><div>That there have been some encouraging clinical trials done on using CCH in the treatment of Ledderhose disease. Basically so far their studies are indicating that the injections are well tolerated by the majority of patients and that most are seeing an improvement in the condition. Overall it sounds promising but obviously they are still looking into it and I know there have been mixed experiences with using it to treat Dupuytren's. </div><div><br /></div><div>Would be good to have another treatment for Ledderhose, of course assuming that is a successful and viable soltiion. </div>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com2tag:blogger.com,1999:blog-660534336558900776.post-12419706472949657702021-07-31T20:59:00.001+01:002021-07-31T20:59:00.180+01:00Patient Survey Results from 2015<p style="text-align: justify;">I mentioned recently that I wanted to do another patient survey, this time Ledderhose specific and probably focusing on demographics, risk factors and patient opinions on the treatment options they have received. I plan on making sure that any survey would be better planned in terms of how to perform the data analysis, something in my day job as a database developer I have to think about a lot. </p><p style="text-align: justify;">Here is a throw back to the 2015 symposium where I presented on the Ledderhose portion of the survey. </p><p style="text-align: justify;"><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="415" src="https://www.youtube.com/embed/splC4aATa3g" width="498" youtube-src-id="splC4aATa3g"></iframe></div><br /><p style="text-align: justify;"><br /></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-30947287517112552492021-07-29T16:45:00.000+01:002021-07-29T16:45:03.566+01:00Dupuytren's Practice Blog<p style="text-align: justify;"> I saw a new blog post by Dr Shaffer posted recently and it is worth considering reading it. The content relates to when is it too early to get RT for Dupuytren's? Now while I know from experience and Dr Shaffers comments the case for Ledderhose is slightly different, however it is good to be knowledgeable that it is not always the right time to have Radiotherapy. </p><p style="text-align: justify;"><a href="https://www.thedupuytrenspractice.com/2021/07/26/when-is-it-too-early-for-radiotherapy-for-dupuytrens-disease/" target="_blank">The Dupuytren's Practice Blog Post</a></p><p style="text-align: justify;">I won't go into the post in detail because that is what the link is for. I have also seen some YouTube videos by Geesis care that I plan on reviewing. There is also a <a href="https://journals.viamedica.pl/rpor/article/view/74068">paper on low dose radiation therapy for benign conditions</a>. </p><p style="text-align: justify;">I originally only scanned the article but noticed TGF mentioned which I had covered previously in a post on the <a href="http://ledderhose.blogspot.com/2012/02/igf-2-and-its-relationship-to.html" target="_blank">pathways linked to the development of Dupuytren's</a>. Be interesting to see whether the proposed mechanism of action of RT / pathways impacted is the reverse of the expected for the cause of Dupuytren's. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-UTF8oP8t8kM/T1Zyjn1ZlkI/AAAAAAAAANc/o0h1Vd0Fa2o27lijpb4NpYvDdWZglwyCwCPcBGAYYCw/s523/tissueandXiaflex.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="523" data-original-width="511" height="400" src="https://1.bp.blogspot.com/-UTF8oP8t8kM/T1Zyjn1ZlkI/AAAAAAAAANc/o0h1Vd0Fa2o27lijpb4NpYvDdWZglwyCwCPcBGAYYCw/w391-h400/tissueandXiaflex.jpg" width="391" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p style="text-align: justify;"><br /></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-56852829728885166202021-07-24T11:20:00.004+01:002021-07-24T11:20:41.566+01:00The return of 5k parkrun<p></p><div class="separator" style="clear: both; text-align: justify;">There was a sense of normality this morning as Eastbourne parkrun returned, the 1st time since March 2020. Having recovered from Ledderhose through radiotherapy and then used my new found health combined with a LCHF diet I got fit and started running. </div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">Since 2015 a large part of that running has been parkrun. The great thing about parkrun is that anyone can take part, it is free and almost everyone is happy to see everyone else. I have done well over 100 parkruns and including junior parkrun (a shorter event for kids on a Sunday) have nearly completed 100 volunteer stints as well. Given the evidence showing a lack of outdoor transmission of a certain condition it has been disappointing (but understandable) that it took parkrun so long to come back.</div><div class="separator" style="clear: both; text-align: justify;"><br /></div><div class="separator" style="clear: both; text-align: justify;">parkrun is wonderful for your fitness but for the sense of community and mental health. You make so many friends and get fitter at the same time. It was wonderful to be back running with all those familiar faces even if things were slightly different. </div><div class="separator" style="clear: both; text-align: justify;"> <a href="https://1.bp.blogspot.com/-Z5L476bDzbA/YPvoE-zWprI/AAAAAAAAhL4/181H3FwqZUEXRqVbSYsrykxq1rG-sy7gQCPcBGAsYHg/s4032/PXL_20210724_083051751.MP.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="640" src="https://1.bp.blogspot.com/-Z5L476bDzbA/YPvoE-zWprI/AAAAAAAAhL4/181H3FwqZUEXRqVbSYsrykxq1rG-sy7gQCPcBGAsYHg/w480-h640/PXL_20210724_083051751.MP.jpg" width="480" /></a></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"> </div><p></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-1078568337368383182021-07-23T18:19:00.003+01:002021-07-23T18:19:51.759+01:009 years post radiotherapy<p style="text-align: justify;">It is now almost 9 years to the day since I finished my 2nd week of radiotherapy, you can read more of my background <a href="http://ledderhose.blogspot.com/2011/11/plantar-fibroma-real-pain-in-foot.html">here</a>.. That was back in 2012 (obviously) and how things have changed since then, though we do have another Olympics about to start. </p><p style="text-align: justify;">I still reflect that is crazy how much has change, not just that I now have an 8 year old daughter but with the Ledderhose and things. Thanks to the radiotherapy I have gained my mobility and am not just able to walk pain free but run pain free, well with no pain from the fibroma, running can still be painful. Although standing for long periods of time can cause issue we still work our way round Legoland and have a great time. </p><p style="text-align: justify;">Thanks to Low carb I have lost weight and am a keen runner. I am really excited that parkrun is about to return in England looking forwards to work my way up from the 150 I have completed so far and I am nearing 100 volunteers as well. With lockdown easing I am looking to get properly back into my running and would love a proper crack at my 10km PB early next year. </p><p style="text-align: justify;">I am hoping to do some more Ledderhose stuff soon, more to come on that in another post or two. I am potentially looking to do a follow up survey from the one in 2014/2015. I have learnt a lot since then around survey design, what I would want to focus on and I have learnt so much in terms of data analysis and that side of things. Still just an idea at the moment. </p><p style="text-align: justify;">Another thing I would like to do is a literature review, although I have been keeping my eye out for ground breaking papers I have lost touch a little and would like to see of there is any exciting Dupuytren's or Ledderhose news I have missed in the last few years. </p><p style="text-align: justify;">Really this post was just to get the ball rolling, to say hi I am here and that I will be looking to post a little more again. Maybe tomorrow I will do a post parkrun post, so happy that things are getting back to normal but I don't want to get into that. </p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com1tag:blogger.com,1999:blog-660534336558900776.post-85345470763418439642021-02-16T17:33:00.003+00:002021-02-16T17:33:33.067+00:00500,000 page views (almost)<p style="text-align: justify;">I have had some interesting discussions in the last few days around Ledderhose, it has been a long time since that has been the case and it was interesting delving back into some Ledderhose based stuff. These conversations led me to looking at the blog and realising that I am fast approaching half a million page views. </p><p style="text-align: justify;">On the one hand that is not a huge number of page views in the grand scheme of things but at the same time I have not posted frequently in a long time and the blog is about a rare condition so the potentially viewer pool is pretty small. </p><p style="text-align: justify;">This year, in November, will also mark 10 years since I launched the blog. I have come a long way and posted about a lot of things in that time frame. The most popular post is still the o<a href="http://ledderhose.blogspot.com/2011/11/plantar-fibroma-real-pain-in-foot.html">riginal post of my story</a>, I have expanded this as I have gone and it does track my progress pretty well. </p><p style="text-align: justify;">On one of my chats I mentioned attending the <a href="http://ledderhose.blogspot.com/p/symposium.html">Symposium </a>and could not believe that was 6 years ago, fingers crossed the next one manages to take place. Attending and presenting at the symposium was a fantastic experience, I learnt a lot and feel that the BDS / IDS showed that patient advocacy can be useful. </p><p style="text-align: justify;">Other highlights include all the patients and professionals I have interviewed and of course on a personal note in that time I have gotten married and had a child. </p><p style="text-align: justify;">So thank you to everyone who has viewed or contributed to the site since I started it, maybe in another 10 years I will be hitting 1 million views!!! </p><p style="text-align: justify;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://lh3.googleusercontent.com/-CXpztBmma2U/YCwByhiJ7jI/AAAAAAAAekg/NgvwCD6GRp407BVS0Vsyml9_QrQxn9XLACLcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="148" data-original-width="322" height="147" src="https://lh3.googleusercontent.com/-CXpztBmma2U/YCwByhiJ7jI/AAAAAAAAekg/NgvwCD6GRp407BVS0Vsyml9_QrQxn9XLACLcBGAsYHQ/image.png" width="320" /></a></div><br /><br /><p></p>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com1tag:blogger.com,1999:blog-660534336558900776.post-58944372803002696252020-05-21T16:50:00.000+01:002020-05-21T16:50:42.473+01:008 years post radiotherapy<div style="text-align: justify;">I had a little notification pop up on my phone today, "Start of Radiotherapy Birthday"</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Made me think that it is now 8 years since I start my radiotherapy journey. Hard to imagine a life where I couldn't walk, now I run, play with my daughter and am 60% of the weight I was at the time. I still get patients asking if radiotherapy was the right thing to do, especially at such a young age. Obviously given the result I have had it was the right choice and I am delighted with the outcome. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">So are some posts I did on: </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><a href="http://ledderhose.blogspot.com/2012/05/radiotherapy-in-surrey-uk-day-1.html">Day 1 of Radiotherapy</a></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><a href="http://ledderhose.blogspot.com/2016/05/a-year-since-symposium.html">The symposium where loads of treatment, including RT were discussed and I presented!!</a></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><a href="http://ledderhose.blogspot.com/2012/07/interview-with-richard-shaffer.html">My interview with Dr Shaffer </a></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Anyways this was just a little update to say that I am still here, I am still running and my foot is feeling great. </div>GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com4tag:blogger.com,1999:blog-660534336558900776.post-7650906141052029672020-02-11T08:31:00.002+00:002020-02-11T08:31:14.773+00:00Ledderhose Webinar<div style="text-align: justify;">
I was recently involved in a Ledderhose webinar, this has been shared on YouTube and you can watch it below. </div>
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GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-52509054107677805532019-11-04T09:48:00.001+00:002019-11-04T09:48:17.908+00:00Dupuytren's and Ledderhose Patient Experience <div style="text-align: justify;">
<b>Dupuytrens and Ledderhose Disease </b></div>
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A Radiotherapy Treatment Experience
Written August 2019 – a patient’s review </div>
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I am a 68 year old New Zealand male with a long history of Dupuytrens disease (palmar
fibromatosis) and Ledderhose disease (plantar fibromatosis). I have detailed my experiences
in this article in the hope that it may give other sufferers of these diseases some insight into
the use of radiotherapy as a form of treatment. I documented my treatment period
(2018/2019) with photos, notes and measurements and have used these as the basis for
this report. I have tried to be accurate and practical with my assessments and hope I have
struck the right balance in the content. This article reflects my own journey and private
opinions, based on my research and experiences. </div>
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<b>Dupuytrens overview. </b></div>
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I have a family history of Dupuytrens and I first noticed I had early symptoms of the disease
back in the mid 1980’s. These symptoms slowly progressed over the years, with signs of
thickening skin, followed by nodes, cords and finally contractures of the fingers. During the
period 1996 to 2013 I had 4 surgeries (2 on each hand) for Dupuytrens. As my hand
surgeon noted, I have quite an aggressive form of the disease. The surgeries addressed the
various nodes, cords and contractures in the palms, index and small fingers and in the webs
of both hands. One of the procedures was a revision surgery with a large, full thickness skin
graft to my right little finger.
In the period 2013 through to 2018 the disease progressed noticeably in both my left and
right hands. In both hands there were nodes in some fingers, thickened areas of skin, cords,
lumps developing in the webs between thumb and forefinger and also the beginnings of
contracture to some fingers. By mid 2018 it was obvious that another operation on my left
hand was going to be necessary at sometime in the next couple of years and that the right
hand would also need future surgery. Obviously I was not looking forward to the pain, risk,
cost, or the 8 to 12 week recovery periods. I will come back to Dupuytrens later in the article. </div>
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<b>Ledderhose overview. </b></div>
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I probably noticed the first signs of Ledderhose in my feet about the same time as I noticed
the Dupuytrens forming – in the mid 1980’s. These signs presented as: a 10mm diameter
lump along the arch of each foot, midway between the ball of the foot and heel, and on the
left foot there was an additional 10mm lump just below the ball of the foot. Over 30 years
these lumps changed very little and caused no problems at all - although I noticed the very
slow development of 2 extra lumps along the arch of both feet. </div>
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<b>Catalyst for Change. </b></div>
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In early 2018 I noticed that the minor lumps in both feet seemed to be getting bigger. By mid
2018 it was obvious that I had 2 to 3 rapidly increasing lumps in each foot and the increases
in size were clearly noticeable with each passing month. These were beginning to cause
regular pain when standing or walking and they frequently caused a sharp aching sensation,
even when my feet were elevated. These distressing developments, coupled with the
ongoing Dupuytrens symptoms I mentioned above, were the catalyst for some serious
research. My previous experience and reading indicated that for both Dupuytrens and
Ledderhose disease the most common treatments were surgical.
I already had extensive experience with Dupuytrens surgeries - all successfully performed
with no complications but with a reoccurence of the disease guaranteed. </div>
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I discussed the Ledderhose situation with my GP and underwent both ultrasound and then
MRI scans to confirm the extent of the condition (and to confirm that the diagnosis was
correct). Subsequently I was referred to a specialist orthopaedic foot surgeon for
examination and consultation. Essentially the specialist’s written assessment was that my
only option was to wait until the disease became debilitating and then to have surgery. He
specifically noted that there were no proven alternative treatments. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My reading had indicated that this disease is know to reappear aggressively after surgery in
approx 80% of cases. The level and degree of recommended surgery to minimise
reoccurrence is, in my opinion, horrific. My interpretation of the medical terminology is that it
involves removing the skin from the soles of the feet and replacing with a skin graft. I
considered the side effects of this procedure would dramatically affect my lifestyle –
basically, severely limiting my mobility. This was not a surgery that I was prepared to
consider. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Treatment Options. </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I began researching alternative treatments for Dupuytrens and Ledderhose disease. Among
them I considered collagenase injections, shockwave therapy, steroid injections and
radiotherapy. In my opinion the two medical conditions are essentially the same disease,
presenting differently in different parts of the body and I was hoping to find a common
treatment for both conditions. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Treatment Objectives </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My first, and major objective was to halt the progression of the disease - thus avoiding or
postponing the need for immediate surgery. The second was to slow or prevent a
re-occurrence of symptoms. The third objective was to reduce the effect of these conditions
in some practical way - perhaps by reducing the size of lumps, nodes, etc, or perhaps
reducing the degree of contraction in fingers or toes, or by simply softening the skin on
palms or soles.
Extensive reading and research revealed that radiotherapy would likely achieve my major
objective and that the second and third objectives could be considered reasonable as an
expected outcome. The internet provided a wealth of information – although it took some
months for me to reach my conclusion that radiotherapy was the right option.
In late August 2018 I began an independent search for a treatment provider by directly
approaching private radiotherapy clinics and specialists across New Zealand. My situation
and prospects were such that I was also prepared to travel to either the UK, Australia or
Germany if necessary. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I received a positive response from Dr Ramesh Arunachalam, Consultant Radiation
Oncologist at the Auckland Radiation Oncologist Specialist Centre. Dr Arunachalam already
had experience in treating Dupuytrens and Ledderhose and he agreed to treat me. He gave
me clear guidelines as to the most probable outcomes of the radiotherapy and detailed the
procedures along with a few possible minor side effects – seemingly, the worst being the
possibility of long term dry skin. He did note that radiotherapy is not normally useful in a
situation where contractures have already developed.
The radiotherapy would involve treating the cords and nodules with a 20mm margin to a
dose of 30GY in 10 treatments. This would be done via a split course where 15GY is
delivered as 3GY each day for 5 consecutive days. This procedure is repeated after a break
of 6 – 8 weeks.
The plan was to treat my feet first and to review the results 12 weeks after completion of the
radiotherapy, with a plan to then schedule the same treatment for my hands. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Ledderhose Treatment. </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Treatment was scheduled to begin in late September 2018. The week before treatment
began I visited the hospital for approx 2 hours so that some custom shaped, sheet-lead,
shields could be made to protect the areas outside the radiation target zones. At each
radiation session these were taped across my hands (total set up time of approx 5 mins per
hand). The radiation delivery was 2.5 minutes per hand – the machine was silent and the
procedure completely free of any discomfort or sensations. It was actually difficult to believe
anything was happening. Each visit took a total of approx 25-30min.
By the start of treatment I had 3 lumps in my left foot measuring 35x45mm, 18mm diameter
and 12mm diameter respectively. The largest had developed in just 18 months from approx.
10mm diameter. In the right foot there were 2 lumps measuring 32x38mm and 18x12mm
respectively. These had grown at a similar scale and rate as the left foot. Additionally a
noticeable tightness had developed in the tendons along the soles - decreasing flexibility on
extension. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Ledderhose RT Results </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
It took about 3 weeks for the effects of the first round of treatment to be clearly noticed and
this was generally evidenced as a reduction in size and a softening of the lumps. The skin
did become dry and I applied moisturiser twice daily. The effects slowly continued over the 8
weeks leading up to the second round of radiotherapy. I viewed these initial results as very
positive. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The second round was completed and within 2 weeks the effects were really beginning to
show with a steady reduction in the size of all lumps. The discomfort experienced on walking,
standing and at rest was consistently reducing, and the hard cords which had been
developing along the soles of both feet had softened and become more flexible, allowing the
feet to extend freely when walking.
I cannot express the sense of excitement and relief that I felt by late January 2019. This had
been a hugely successful result – far beyond the conservative expectations I had at the
beginning of the treatment. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Dr Arunachalam reviewed my situation at the end of January. His observations can be
summarised: “Post treatment the patient has had a dramatic response to RT with all his
lesions in both feet showing significant reduction in size. In fact, on examination it is very
difficult to feel the smaller nodules”.
I had experienced minimal side effects during treatment apart from some mild skin irritation
and some tenderness. These symptoms had resolved within 2 weeks of the last RT session
– in fact I spent several weeks of last summer barefooted on a boat and at the beach.
It has become apparent to me that the positive effects of the RT continue for several months
after the treatments end. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
As I write this article in August 2019, nearly 9 months since the
treatment ended I can summarise my situation.
I do have a single residual lump in each foot, each measuring approx 20x22mm. They are
quite flat and not particularly noticeable although they can be felt. There is no discomfort
when pressure is applied. The soles of both feet are more flexible and the cords softer and
less prominent. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Overall I feel that my Ledderhose symptoms have been reduced by approx
85%. I can walk, stand and run without any discomfort and essentially, on a normal daily
basis, I am completely unaware of the minor residual indications of the condition. In this
sense I can positively rate the RT treatment as a total success.
Whilst the long term efficacy of the RT is not completely known I believe I can optimistically
expect to remain untroubled by Ledderhose disease for at least several years – likely even
longer. If the condition should reoccur, my specialist advises that a further round of RT
treatment is considered both safe and practical. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Dupuytrens Treatment. </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The first treatment was at the end of February 2019. At this time, in my right hand, I had a
noticeable cord running from the palm to base of the thumb where there were the beginnings
of 2 small nodes. These indications were accompanied by the usual thickening in the
surrounding skin. There was also a large 10mmx15mm sized lump in the web of the hand.
There were early signs of 2 nodes on my little finger (which had been skin grafted in 2000).
The Dupuytrens in my left hand was more advanced. The skin around the base of the thumb
had thickened and there was a knotted cord running from the palm, up the index finger to a
9mm diameter node just below the first joint. There was a large lump measuring approx
10x15x20mm in the web between thumb and forefinger and this caused some restriction to
my ability to fully open the gap between thumb and forefinger, and pain on over extension.
At the base of the little finger there was an area of noticeably thickened skin measuring
approx 20mmx20mm, and from here were 2 cords running up to an 8mm diameter node just
below the second joint. These were causing the early stages of contracture.
The preparations for treatment and the treatment regime for my hands were the same as for
the Ledderhose procedure. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Dupuytrens RT Results. </b></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Again it took about 2 weeks for the effects of the first round of treatment to be clearly noticed
and this was generally evidenced as a softening of the harder areas of skin. The skin did
become dry and I applied moisturiser twice daily which controlled the condition. The effects
slowly continued over the 7 weeks leading up to the second round of radiotherapy. By this
time some of the lumps had reduced (although not as obviously as with the large
Ledderhose lumps) and the restriction between left thumb and forefinger had eased. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I viewed these as very positive initial results. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The second round was completed and within 2 weeks the effects were really beginning to
show with a steady reduction in the size of the lumps in the webs of both hands – both were
about 30% smaller. There was a further easing in the restriction between thumb and
forefinger on my left hand which allowed greater extension with reduced discomfort. The
large palm thickening at the base of the small finger was significantly reduced in volume with
the surrounding skin becoming soft and flexible to the touch. At this stage the 2 nodes on
this hand were little affected but there seemed to be a slight softening of the cords in the
little finger (an unexpected benefit – although small).
The changes in my right hand followed a similar course but I was pleased to see that the 2
small early stage nodes on the little finger had noticeably reduced. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
At the 5 week point both hands began to dry and the skin deeply peeled in varying degrees
over most of the treated areas of both hands but particularly where there had been lumps.
This was great as it further reduced the apparent size of the lumps. It took about 3 weeks for
this process to complete and after that my hands were generally left softer and the skin more
flexible, although still somewhat dry – a condition easily remedied with moisturiser.
As with the Ledderhose experience, the positive effects of the RT continue for several
months after the treatments end. As I write this article in August 2019, nearly seven months
since the Dupuytrens treatment ended I can summarise my situation. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The lump in the web of my left hand has reduced by 60% in volume and that in the right by
80%. I have no noticeable restriction between thumb and forefinger of the left hand; full
extension and lifting a load cause no pain. My little finger is less contracted (it is now almost
straight). Nodes in the 2 fingers have reduced by about 20%. Areas of thickened and harder
skin are all approx. 50% reduced in size and softer. The cord running from palm to index
finger is mainly unchanged but subjectively a little more flexible. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The right hand has
continued to follow a similar improvement with the cord mainly unchanged but both nodes
in the little finger are now visually indistinguishable.
An interesting observation for me now is just how much the Dupuytrens growth seemed to
have been more generally spread across the surface layers of the skin on the palms of both
hands than I had noticed. The treatment has left the cords in both hands more noticeable to
the touch (I guess since the surface layers are now softer and more flexible). </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Overall the results were very positive and although not as dramatic as those for the
Ledderhose I would say that all 3 of my initial expectations regarding RT were exceeded.
My main hope that the disease progression could be slowed or halted appears to have been
realistic and there is good evidence that Dupuytrens responds in this way to RT.
I would rate treatment as approx 60% successful in terms of a physical reduction in
symptoms but since the residual symptoms are essentially untroubling and visually
insignificant this success might well be considered around 75%. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I am therefore feeling positive that my Dupuytrens progression has been halted - certainly
the symptoms I was experiencing have significantly reduced. Although, as with the
Ledderhose, there are still some residual physical indicators, generally on a daily basis I
would say that I am now unaffected by the disease. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Summary.</b> </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
At the start of this article I laid out the objectives I had for any treatment. The first was to halt
the progression of the disease - thus avoiding or postponing the need for immediate surgery.
The second was to slow or prevent re-occurrence of symptoms. The third objective was to
reduce the effect of these conditions in some practical way - perhaps by reducing the size of
lumps, nodes, etc or perhaps reducing the degree of contraction in fingers or toes or by
simply softening the skin on palms or soles. The ratings I have given the 2 treatments are
based on my original objectives and conservative expectations. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
For me, the radiotherapy treatments I underwent in late 2018 and early 2019 have been
hugely successful in delivering significant improvements to the physical symptoms of the
diseases, and a corresponding reduction in the mental anxiety that is a real part of watching
the progression of these distressing conditions. I have no ongoing side effects or skin
dryness issues.
This time last year all I could see ahead of me was a round of aggressive foot surgeries
which would surely have left me significantly less mobile, if not partially disabled, and a
future of more routine surgeries to control the Dupuytrens. As I write this report I feel a great
sense of excitement at the very real and positive results of RT and look forward to the
strong probability this has halted the progression of the diseases – maybe not forever, but
I’ve read a lot of articles and reports which record no noticeable reoccurence of symptoms
for periods of more than 6-8 years. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
My understanding is that RT is acknowledged to work best if treatment is given when either
Dupuytrens or Ledderhose are in the active growing phase, rather than after cords and
contractures have formed. To me this implies that treatment is better sooner than later and
that allowing the conditions to progress to advanced stages of growth and contracture (ie to
the degree where surgical intervention is normally considered and recommended) would
negate the very real benefits that early RT could bring. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I was advised that there is no risk of damage to underlying tendons or bone and studies
have suggested no increased complications with surgery after RT delivered to this dose – if
future surgery is needed.
From my experience I would urge those who suffer from Dupuytrens disease (palmar
fibromatosis) or Ledderhose disease (plantar fibromatosis) to seriously consider the early
intervention of Radiotherapy ahead of regular surgical procedures. If your regular GP or
surgical specialist is unfamiliar with, or unsupportive of, the use of RT for these conditions I
would urge you to “start the conversation” and, if possible, gain their support. If this is not
forthcoming then “self refer’ to a Radiotherapy Specialist. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I hope there are readers who have found this article useful – good luck with your quest.
Thanks to Dr Ramesh Arunachalam and to the kind, talented RT team who treated me at Auckland Hospital. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<b>Disclaimer</b>: This article is the result of my private research and personal experiences – I do not have a medical background.
Readers should form their own opinions about RT treatment and ultimately seek advice from a suitable medical professional. </div>
<div style="text-align: justify;">
<br /></div>
GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-88503257214673416272019-07-31T11:58:00.000+01:002019-07-31T11:58:12.591+01:00Ledderhose still has an impact <div style="text-align: justify;">
Ok so I appreciate that I am very lucky when it comes to how my Ledderhose reacted to the radiotherapy and the position I am in now, I am able to run and walk a lot. I am able to play badminton and play games with my daughter, after all I am only 32 and this things should be a given. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
The thing is that radiotherapy is not a cure, it doesn't work for everyone and I still have some issues. In the last year we have been lucky enough to have Merlin passes, this means we can visit numerous attractions in the UK without paying the entry fee (having paid for the passes). Whilst I can happily walk or for that matter run round the parks (running at 10k at Chessington later in the year) my foot does become painful after a day of standing in queues. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I am again lucky that I have a good relationship with the doctor, Dr Shaffer, that treated me and I was provided with a note stating that standing for long periods of time causes pain. As a result I have a pass that means I don't have to queue, well I have to virtually queue but not actually stand in the queue. In some ways I am so good now that I feel guilty about using this however on the 4th day last week at the parks my foot was starting to really ache and I have no doubt that without the pass this would have start considerably sooner. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
I don't really have many other area's where my foot still impacts my life and for that I thank everyone that helped me to get RT.</div>
GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0tag:blogger.com,1999:blog-660534336558900776.post-58867872695578805272019-07-20T10:31:00.000+01:002019-07-20T10:31:03.405+01:00Little Update - 7 years post RT<div style="text-align: justify;">
Hmm, well it seems that it has been 7 years since I finished radiotherapy on my left Ledderhose foot. Those that have read the blog will know that it has been quite a transformation since then and as a result I haven't had much to post about. However I am still getting quite a few enquiries and wanted to let these people know that I am still monitoring the blog and the associated e-mail account. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
In 2019, after a knee injury in 2018, I am back to running and am even in some "barefoot" shoes as I find they help my knee. My foot is still fine and I even came 3rd in a race earlier in the year. Sure it was a low-key race but still not a bad thing. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
As always if you have any questions get in touch, if you want to contribute with an interview as a doctor or a patient... get in touch or if you are aware of some research that I might like to see (and try and remember my science degree!!!) then get in touch :-) </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
To be honest I don't really have much to say and this was really because I had feedback that a post would be appreciated by some of the readers :-) Here is a picture of me running </div>
<div style="text-align: justify;">
<br /></div>
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GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com2tag:blogger.com,1999:blog-660534336558900776.post-67614602396207709802018-12-27T18:39:00.001+00:002018-12-27T18:39:33.215+00:00Interview with Tenex Patient<br />
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">December 26, 2018</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">Michele from Wisconsin – My
Ledderhose Story</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><br /></span></div>
<h1 class="western" lang="en-US" style="background: #e9ebee; line-height: 0.64cm; margin-bottom: 0cm; margin-top: 0cm;">
<span style="color: blue;"><u><span style="font-family: Arial, sans-serif;"><span style="font-size: small;"><b><a href="https://www.facebook.com/groups/1462124944043779/?ref=group_header">Dupuytrens,
Ledderhose and related conditions support</a></b></span></span></u></span></h1>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br /></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">Hello, I'm new to this community and
I've read member questions about lumps on the bottom of their feet
and was diagnosed with plantar fibromatosis or Ledderhose disease.
I've have had this condition, on both of my feet for 15+ years, and I
have it in my hands as well where they call it Dupuytren's disease.
Mine happens to be hereditary, although other causes are possible. My
ancestors were from Europe and I found an interesting article about
the hand disease that talks about it originating all the way back to
the Viking era https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305903/
which is basically the same information I found about Ledderhose
disease.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">I could go on and on, but it took me
years and tears and lots of pain before I found a combination of
things to help me with the pain from my lumpy feet. Most times I
seemed to know more than the doctors and physical therapists about my
condition, which I found terribly annoying! But with persistence, a
lot of internet research, I found a great family physician and
podiatrist that have helped me tremendously. This disease is not
curable, because it is in my DNA, but there is help to manage it.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">1. Custom orthotics for me DID NOT
work. I've had two pairs of them at about $1,000 a crack. They make a
model of the sole of your foot and carve out areas where your lumps
are. The problem I encountered was the area where my lumps had less
pressure on them, but the harder type insoles they use just caused
hurting in other parts of my feet. They also want to try and correct
your gate, which at this point I don't need correction I need pain
relief. My podiatrist agreed other patients noted they just caused
other areas of the feet that ended up hurting. I feel the material
they used for the insoles was never soft enough. </span>
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">2. A Pedorthics shoe store helped me
create soft flat insoles to use in my shoes and I myself used a
dremel tool to carve out the areas with lumps to off-load some
pressure from them. The rest of the insole was nice and soft for my
feet and this has been a reasonable solution for me.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">3. My lumps cause me serious pain and
I'm managing that pain by using a combination of prescription drugs
and topical lidocaine cream on the lumps. First for chronic pain I
use Cymbalta or generic is Duloxetine. It is approved by the FDA for
chronic nerve pain often caused by diabetes, but it helps my nerve
pain as well. It's not only the feet that hurt, but my entire legs
too. The other prescription is an anti-inflammatory drug called
Diclofenac Sodium. Your doctors would decide what dosage to start you
on. And last I rub 4% lidocaine cream on my feet lumps to take the
edge off the pain especially when I'm trying to sleep.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">4. I will AVOID Surgical Excision of
Plantar Fibromas (https://www.ncbi.nlm.nih.gov/pubmed/18626366) until
my options are either a wheelchair or having the surgery done. Again
what I've read many people go through this very invasive surgery only
to have the lumps return and sometimes with even worse effects than
what they started with. </span>
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">5. I have had 4 foot surgery with a
much less invasive procedure called Tenex (see
https://tenexhealth.com). This procedure softens the lumps and
reduces their size making them, after recovery, a little less
painful. I have this done every couple of years, because the lumps do
not completely go away, and they do harden again over time. It is
something that helps me maintain a somewhat normal routine so I can
do my housework, shop for the groceries, and be more mobile again. So
again this helps manage my disease, but does not cure it.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<br />
</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><b>Interview with patient who had
minimally invasive surgery (Tenex)</b></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>1) Do you have Ledderhose
disease, Dupuytren’s disease or both? </b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; text-indent: 1.27cm;">
<span style="font-family: Arial, sans-serif;">I have conditions, Ledderhose disease
and Dupuytren’s disease.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>2) Do you have a family history
of the disease or have any increased risk from other risk factors
such as excessive alcohol consumption, smoking, diabetes etc?</b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; text-indent: 1.27cm;">
<span style="font-family: Arial, sans-serif;">My dad had both conditions as well. </span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>3) How long had you had
Ledderhose before considering Tenex? And what other treatments had
you received / were you offered by medical professionals?</b></i></span><span style="font-family: Arial, sans-serif;"> </span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<ol>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">I probably had Ledderhose for 12
years before I learned about Tenex and had the procedure done to my
feet.</span></div>
</li>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">Custom orthotics, which were
terrible, at about $1,000 each time (I tried them twice).</span></div>
</li>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">4% Lidocaine cream – a topical
anesthetic.</span></div>
</li>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">Physical therapy to stretch feet, but
honestly the PT never saw my type of foot condition before! So it
really did nothing for me.</span></div>
</li>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">I was prescribed a T.E.N.S. unit for
chronic pain, which can be helpful to reduce swelling and pain.</span></div>
</li>
<li><div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">I was prescribed Cymbalta or generic
is Duloxetine for chronic nerve pain, and Diclofenac Sodium as an
anti-inflammatory. These two have helped me a lot to manage my pain.
I’d say they actually gave me my life back so I could get out of
the house or even just be able to do my housework and be more
mobile.</span></div>
</li>
</ol>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>4) Before Tenex were you made
aware of the rate of reappearance after traditional surgery and did
this concern you? </b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
<span style="font-family: Arial, sans-serif;">Absolutely, it’s not a cure just a
lesser invasive surgical method to reduce and soften the lumps. It’s
something I’ll continue to have done every few years until they
find a better option or cure.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>5) Were you at the stage where
you couldn't walk before you had Tenex / what sort of pain were you
in?</b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
<span style="font-family: Arial, sans-serif;">Before I was placed on my meds, I
could walk, but with significant pain. I walked slowly and how much I
walked or stood on my feet. I was horribly depressed from the
constant pain at my young age (early 40’s) with no idea how to help
myself. I saw 3 podiatrists, physical therapists multiple times, and
finally my general family doctor suggested I see a podiatrist I knew.
This is when my pain finally started to become manageable.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>6) Tenex is not that familiar to
me, please could you explain the difference between it and regular
surgery?</b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
<span style="font-family: Arial, sans-serif;">Tenex uses ultrasound as an imaging
tool to identify the Fibromas and visualize the procedure. A pen-like
device cuts and removes scar tissue on the tendon. One hole is made
in the Fibromas, with the pen-like device, and holes are poked all
over the inside of the Fibromas and at the same time the device
irrigates the wound and extracts the debris, making the Fibromas
softer and smaller. It can be done with local anesthesia or under
general anesthesia. I’ve had both and do NOT recommend the local it
is very painful and you are completely awake.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>7) How did the treatment go? How
long did the treatment take and what was recovery time like?</b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
<span style="font-family: Arial, sans-serif;">The Tenex procedure can be very short,
or in my case it took the doctor 1.5 hours of work on both my feet
before she was done. My complete arches on both feet are covered in
Fibromas. I was directed to have no weight bearing on my feet for 2
weeks, wore a walking boot for about 4 weeks total, and went through
physical therapy afterwards as well. I found doing both feet at one
time was easier, because it levels out my walking with the books they
gave me.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>8) How long ago was the Tenex
treatment? Have the lumps grown back? If yes how long did they take
to grow back and are they worse now? </b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm; margin-left: 1.27cm;">
<span style="font-family: Arial, sans-serif;">It’s been two years since my last
Tenex procedure and the lumps are hard again and big as they were
before the procedure, but I expected this to be an ongoing procedure
for me. I do recommend the surgery, because it does provide some
relief. Some relief is better than no relief to me.</span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;"><i><b>9) What would you say your
standard of walking is at the current time and do you think this
would be different had you chosen not to have Tenex?</b></i></span></div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
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</div>
<div class="western" lang="en-US" style="line-height: 100%; margin-bottom: 0cm;">
<span style="font-family: Arial, sans-serif;">My standard of walking is better, and
yes if I’d not had the surgery I’d just be dealing with the big
hard lumps, but surgery alone isn’t enough to keep me mobile. My
prescriptions also do wonders for my quality of life.</span></div>
<br />GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com1tag:blogger.com,1999:blog-660534336558900776.post-61305221719121262252018-01-10T21:21:00.001+00:002018-01-10T21:21:11.781+00:00Update on me and things<div class="MsoNormal" style="text-align: justify;">
So overall I am good, I have a few interesting projects that I am working on and my foot is still healthy, check out the BDS to see how things are progressing with the charity. </div>
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<div class="MsoNormal" style="text-align: justify;">
Slightly off topic for the rest of today but I wanted to mention another
project that I have been working on that might cross over to the work I am
doing on Dupuytren’s and Ledderhose. In my work I have been utilising various
skills over the last decade now I have gained experience in the sciences, which
is why this blog stared, and also in data analytics, database development and
more recently python and machine learning. Stick with me here I am going
somewhere. <o:p></o:p></div>
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<div class="MsoNormal" style="text-align: justify;">
You see I have started <a href="https://autoofficepy.blogspot.com/">another blog on python</a> and one of
my projects with this is to do some analytics around the Dupuytren’s and
Ledderhose area. There are some potentially interesting things I can do if we
can get the data together that will enabled me to do it. I have had a look at
the data from the 2015 survey and I am not sure that we asked the right
questions in quite the right way for this kind of study. <o:p></o:p></div>
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<div class="MsoNormal" style="text-align: justify;">
For example the DupStudy is going to be collecting a lot of
medical data and biological samples for patients and control groups, I would
like to do a study (not dissimilar to the one presented at the 2015 Dupuytren’s
Symposium) on whether there are any lifestyle factors that contribute a) to the
onset of Dupuytren’s b) severity of Dupuytren’s and c) age of onset. Given the
relatively small datasets I would be working with it would not likely yield
amazing results, but you never know what could be found. By study I actually
mean get the computer to do the work for me, I have been working with Neural
Network and machine learning which means we might be able to spots trends and
patterns in patients and therefore make predictions that would not be seen by
human analysis. For now this is just a pipe dream and maybe one day it will happen.<o:p></o:p></div>
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I will need to have a discussion with some of my contacts
and see if this is something we can get going.<o:p></o:p></div>
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<div class="MsoNormal" style="text-align: justify;">
For those that followed it the 2191 challenge is now
complete, check out the link to the right to see how to got on, for January
2018 I am taking a break from running to make sure that my body heals from the
niggles I developed towards the end of the year. <o:p></o:p></div>
GaryManleyhttp://www.blogger.com/profile/03039676015910922554noreply@blogger.com0