Interview with RT and Hyaluronidase patient from USA

The following is an interview with a patient that has recently had Hyaluronidase injections with Dr Davis, see my interview with him here. 

1) Do you have Ledderhose disease, Dupuytren’s disease or both?

I have both

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.?

My father possibly has Dupuytren's, not officially diagnosed and not active. I do not drink, smoke, have diabetes or any other risk factors other than partial European heritage. 

3) How long had you had Ledderhose before considering each of your treatments?

The Dupuytren's started in my 20's (I think it started after carrying heavy buckets), I developed nodules which remained inactive for 20 or so years. Next I had frozen shoulder (which is also possibly linked) in one shoulder then the other when I was about 40 or so. My dup began to be active 5-8 years after that. After consulting orthopedic doctors who recommended doing nothing until the contraction was really advanced I researched and decided to have NA done. Which I did and was pleased with the results but wasn't splinting at night, so after about a 1-2 year time my hands (right in particular) to begin contracting again. The next procedure was not due to the advancement of the disease but because I got a sliver in the largest nodule on my right hand which got infected. I had to have surgery in order to stop the infection however the surgeon did not remove the Dupuytren tissue that went into my fingers because of the risk of the infection spreading into my fingers. So I had a partial removal of the diseased tissue, this was in Jan 2013. Since then I have 2 new nodules in other parts of that hand and the one up against my ring finger is enlarging. My left hand is contracting, but fairly slowly as I began to splint at night.

My Ledderhose started in 2011 when I began to notice a "thickening sensation" in the balls of my feet when I got up in the morning. And not wanted to deal with it I ignored it, ha that worked well. Anyway after a few months I began researching and decided to have RA in Germany which I did in Sept and Dec. Prof S increased the size of my target area because I did have something in the ball of my right foot which he thought could be a fibroma. I didn't have my hands radiated the first trip because I didn't think they were active at the time, but the second trip they were itching so I did have one treatment on my hands as well, but didn't go back for the second because of the advanced state of my hands the odds were not in my favour for much effect. My feet began to really hurt during the last 2 days of my second treatment. I began to not be able to walk much at all, which continued after getting home until I had the Hyaluronidase injection.

4) What sort of pain were you in before you had each of the treatments? 

I was never in much pain with Dupuytren's--other than a feeling of discomfort that my hand was out of alignment, just an occasional aching or rarely a sharp pain. Mostly itching when it is active. With my feet there was pain but not intense until after the 2nd round of radiation. Then my feet just hurt and I could only be on them for a few hours at a time and had to sit often. If I went shopping I used a wheelchair etc. and used it in my house just to relieve some of the pain. It got so bad that I wondered if it was more than just Ledderhose, especially because I do have some apparent fibromas in the balls of my feet which is not the norm.

5) I have not heard from a patient that has had the Hyaluronidase injections, please could you explain the procedure? 

I had an MRI before I decided to go to Dr. Davis so that I could try to assess if more was going on than the Ledderhose. But after I got to Dr. Davis' office he used a portable sonogram to check what was going on and he said it helped him to assess it better than the MRI because he could move my foot and watch to see how the nodules responded. He did not pressure me at all and almost didn't give me the hyaluronaidse because it just seemed my symptoms were so severe and different than other Ledderhose. My nodules never did get very big about the size of a large semi-squished grape. I opted for the injection and am so glad I did. The first time he spent quite a lot of time with me really examining my feet and then discussing orthotics and also a topical ointment. He then did a nerve block on my feet then a local anesthesia and then injected the Vitrase brand of Hyaluronaidse using the ultrasound to guide it exactly where he wanted it. The next day after the nerve block wore off it was almost like I had my "old" feet back. I was to go back in 3 weeks for the orthotics and also for another injection, which I did. This time I opted out of the nerve block (that was the most uncomfortable part to me) and the injection was not bad at all. The orthotics are to try to make me walk differently on the balls of my feet so the fibromas there will hopefully get some relief. I also just started using the topical because he is not comfortable injecting the areas in the balls of my feet because of the potential tissue damage there.

6) How did the Radiotherapy go? 

I think I answered this above. I really didn't notice any other side-effects except the pain after the 2nd treatment in my feet--no burning or redness or anything like that. The nodules in the arches of my feet stopped growing after this. Whether or not I had the all the other nodules in my feet at this time is questionable to me--I'm just not sure. My hands only had one treatment and they were already too far along to do much good.

7) How did the Hyaluronidase treatment go?  

I have no negative things to say about the Hyaluronidase treatment, the worst part as I stated above was the nerve block and having my feet asleep for the trip home and overnight. There was very little pain with the injections themselves and the results so far have been amazing --probably 80% better pain level than before.

8) How long ago was the Hyaluronidase treatment? 

My first injection was 4 weeks ago and the 2nd 1 week ago.

9) Would you say that the treatments have been worth it? And would you recommend any of them to people that have Ledderhose? 

I think these treatments are more than worth it. I cannot attest to the long-term results but I am thrilled thus far. I would have started with this without a doubt over RA. It has given me my walking life back , Hyaluronidase has been used for cosmetic procedures for years--If I have to do it again in 2-3 years I will, however that is not the norm according to Dr. Davis testimony he does not get patients who return and he has been doing this for over 20 years.

10) Do you have anything else you would like to say to Ledderhose patients?

I had given up and resigned myself to a wheelchair…this has given me hope, don't give up.

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This treatment appears to have very good results and I hope that continues for this patient and for any others that decide to have it. I would say that the time from the treat to now is clearly not enough time for the lumps to grow back.

From my interview with Dr Davis I know he claims to get very good results but given the lack of published medical data and the statement below recurrence is something that concerns me.

(Originally pointed out by Wolfgang on IDS forum)

For Dupuytren's contracture McCarthy wrote in 1992 "We reviewed ten hands in nine patients who had enzymatic fasciotomy for Dupuytren's contracture, with an average follow-up of 6.5 years. While all patients were initially satisfied with the results, the disease recurred quite rapidly to pre-operative levels in seven patients over the subsequent two to three years" http://www.ncbi.nlm.nih.gov/pubmed/1624874 

It will be interesting to see how things go in future years and to follow up with some patients that had this 5 or so years ago to see how they are doing now. 

The above patient is Penny on the IDS forum.

A new job, a new start and a better foot?

I am happy to be able to announce today that I have a new job that will not require me to be on my feet. As I have made clear over the past few weeks it has been one of the hardest decisions of my life to give my a career in science, something I have been training for for nearly 7 years and that's without taking into account college. But as people who work in a science lab know the job can be very stressful on your feet and this is certainly something that I had to put up with in my job. The condition was manageable until recently when the pain just got too much and it seemed so stupid to be putting myself through that suffering when there are so many things that are more important in life. 

Luckily for me I have other interests which would likely lead to a job that is not only off of my feet but more secure in terms of day to day but also in the long term and would pay more from the start. This is the IT sector, going back to those A-Levels I mentioned I am happy to say that one of those was Computing and this coupled with my continued interest in computers, spreadsheets and programming, coupled with a 1st class result for my undergraduate degree meant I was a good candidate for graduate IT jobs that were looking for trainees. 

Now these jobs are probably not all that common but luckily for me one popped up in my local town, a job as a graduate IT analyst / programmer. Perfect for me, I had all of the attributes they were looking for and so I gave them my CV. From this I was very happy to hear that I had got through to the next stage which was an application form. This was quite long and detailed and I guess I must have filled it out really well because I got called out for a competency based interview. 

This interview was of course on their site, I was happy when I arrived to see how it was set up, it came across as much more mature and respectful that another interview I had been for which didn't strike me as the right set up from me but this place seemed really nice. Being me I arrived way to early and was left sitting in the waiting area but was called up and I was offered the lift and they seemed to recognise straight away that I might need help because of my foot but I didn't feel like they were judging me because of it. 

At this point the lady interviewing me offered me a drink and we sat down for what seemed like a friendly chat as much as an interview. I found her very easy to talk to and felt that she was finding the good, positive and transferable skills from what I was saying, we even got to talking and it came up how I got married recently and turns out she had her wedding reception in the same venue as we did. I think they liked the fact that I wanted to find a company to train me and where I could stay for a long time and they would feel the benefits of the training, so for once my lack of leaving the area and love for the area probably played into my hands. 

After this there was a bit of waiting until I found out I had been called back for an interview by my potential manager and a senior member of the team. I had to wait a couple of weeks for this interview and didn't know what to do with myself in this time. You see if I went onto the company site it was all about what they do and not what their programmers do as they work behind the scenes working on their internal systems. This meant that there was only so much I could teach myself about the company and I almost went into this second interview, the 4th stage, feeling very under prepared. 

Being me I again turned up early, only 10 minutes this time and I was called up basically straight away and was taken through to a different room from last time but I felt comfortable and was again offered a drink. This time it was 2 on 1 but I was just asked typically questions and how would I deal with certain situations. I was given a history of the company and an outline of the role and what to expect. I then asked loads of questions, I had come prepared and was genuinely interested in the position. We then again got into personal things and being married came up and where we went on honeymoon and then cricket was mentioned. I think my love of cricket came to my aid as well, the two interviewers were both very keen cricket followers and players and this got us into talking and before we knew it an hour had passed. Overall I felt that things went really well and I am going to enjoy working with people who like cricket, this is a far cry from where I work now where sport in general is pretty much ignored. 

Then came the wait, at the end I was told I would be contacted next week with the decision and  so I waited. I waited and I waited, By Friday I had pretty much lost hope and was resigned to sending them an e-mail on the Monday to confirm what I suspected, that I didn't have the job. Well I e-mailed them and they replied back that they were sorry for the delay but they ended up having an interview on Friday and need to see all candidates before making their choice but that one of their choices was me. I just needed to wait for them to draw up the contracts and contact me to go through the terms before I decided whether or not to accept. Well today I got those terms and was happy with them and therefore I have accepted and I am now looking forward to starting my training to become an IT analyst and programmer. 

I was so happy when I read the e-mail that I was going to be offered a position that I called my wife, texted my best mate and mother-in-law and was on the way to my parents so luckily I could tell them in person, Everyone was very happy for me, I now had a job which I could look to build a career in, off of my feet and hopefully staying local. The best thing was that of all of the jobs that I had found, of all of the jobs that I had applied for, of all of the companies that I had seen this was the one I wanted. Looking around when I was there I felt that I would fit in with the people and the company and feel that the job is great for me. I can't wait to start and I have just got to make the most of my few weeks off and of course I start the second week of radiotherapy on 16th July. I have now been informed that my contract is on the way and of the salary and start date and I am going to accept. What was even nicer was that in the e-mail they asked " are there any special considerations we need to look at for your desk/chair etc as we want you to be as comfortable as possible whilst at work. " How nice!

Thank you to everyone for your support through this hard time. People have given me the confidence to leave the PhD and realise that it was not just the right choice but it was the only choice and then also giving me the confidence to know that I can do these other jobs. To get offered the job on my first day off after leaving the other job was such a relief. Also thanks for the support people have given me on here, whether through a comment on one of the forums in support, a comment on here or agreeing to be interviewed on here it has all helped boost my confidence in my abilities and I will continue to make this blog as helpful and amazing as I can. Hopefully I can keep up to date and in touch with science through my endeavours on this blog and through my many friends who still work in the field.  

A happy day, a great day and a whole load of pressure off of my foot.