Tuesday, 1 April 2014
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.
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.