Forum for Dupuytren's contracture

Re: Swelling after Surgery

wach — Wed, 10 Mar 2010 09:45:50 +0100

After my surgery it took 6 months until the swelling was completely gone. It took at least 2 months until I was able to make a fist again. As callie wrote, everyone is different. As long as you have no infection and the swelling gets better you ware OK. If the swelling does not get better afetr one month you need to consult with your docotor. Extensive and long time swelling might indicate a problem.

Wolfgang

Quote:

Hello,

I am a 51 year old Type 1 diabetic whose had diabetes for 41 years. Other than having dupuytren's I am quite healthy considering how long I've been a diabetic.
...
The biggest problem I've encountered is swelling! Is it common to still have swelling after this length of time (almost 2 months since surgery)? What should I be doing to combat the swelling? Is this normal or am I just being too impatient?

Thanks in advance for your help,

LeonaS

Re: Swelling after Surgery

leonas — Wed, 10 Mar 2010 05:52:13 +0100

Hi Callie,

Is a flexible Ace bandage the same as a tensor bandage? Is the idea to force my hand into a fist by wrapping the bandage tightly around it?

LeonaS

Re: Swelling after Surgery

callie — Wed, 10 Mar 2010 04:03:08 +0100

Everyone recovers at different rates. Swelling is not unusual as long as your Dr. feels that there is no infection involved. Wrapping your hand with a flexible ace bandage for ten minutes at a time is what works for making a fist. Do it 5-10 times a day. Flex your hand open and shut several times afterwards.

Swelling after Surgery

leonas — Tue, 09 Mar 2010 23:32:22 +0100

Hello,

I am a 51 year old Type 1 diabetic whose had diabetes for 41 years. Other than having dupuytren's I am quite healthy considering how long I've been a diabetic.

I had a palmar fasciectomy to correct the dupuytren's in my left hand on Jan 14/10. On Feb 2 I had a splint made and was given numerous exercises to do. I was told to wear the splint for 6 weeks at night only and to do physio 6 x/day for at least 6 weeks or more. I'm also doing deep massage. I went to my family Dr. yesterday and she was happy with the progress I'm making even though I can't make a fist yet.

The biggest problem I've encountered is swelling! Is it common to still have swelling after this length of time (almost 2 months since surgery)? What should I be doing to combat the swelling? Is this normal or am I just being too impatient?

Thanks in advance for your help,

LeonaS

Re: I have had surgery to remove my Plantar Fibroma Please read

flojo — Mon, 08 Mar 2010 00:17:57 +0100

It takes a while to get used to finding all the information on this great website, but here is info that you can access from the menu on the left side of this page. To find in, click first on Radiation Therapy, then scroll down to clinics in the US and you'll se Florida in bold print. I don't know anything about him, but evidently somebody who has used this website had RT done by him.

Southside Cancer Center

Dr. Michael Sinopoli
3599 University Boulevard South
Jacksonville, FL (Florida) 32216

Phone: (904) 391-1100

(please verify address, we are not sure about it)

Re: New to the group.

flojo — Mon, 08 Mar 2010 00:10:21 +0100

ValWils,

If you were diagnosed by your orthopedist as having Dupuytren's, you would benefit from going to the menu on the left side of this page and read everything that you can find. It will help you decide what you need to do. Even after reading everything, it won't be easy to decide. No one can really tell you either, because this disease is different for everyone but reading the various postings on this forum will help you to understand it.

You can email pictures of your hand to some of the doctors who do NA. If your ring finger is beginning to contract, you might benefit from NA, or maybe not. Dr. Eaton in Florida and Dr. Denkler in California respond to emails, Neither are near you, but they will very likely respond to you anyway. They can tell you a lot by looking at pictures of your hand.

If you do have Dupytren's and it is progressing now, that could mean that it is active, therefore you could consider radiation therapy.

I had my Dupuytren's about 1 1/2 years when I decided to have NA on the mild contracture. I then did RT to stop the progression. I am pleased, so far, with my decision and the treatment results.

Learn all you can about it and keep asking questions here on this Forum.

Re: Radiation Therapy in the UK and Germany

ChrisI — Sun, 07 Mar 2010 21:22:30 +0100

Thanks for the information about a possible less costly option. I have emailed Prof Seegenschmiedt to ask about having 7 sessions over one visit. This would definitely help to cut the costs. Unfortunately for me both hands and both feet are affected. Maybe, as you said, treatment would not be deemed suitable for all four extremities but I shall have to wait for a consultation to find that out.
Has anyone else paid for treatment in Germany? If so who did you go to for treatment? Have you any advice about where to stay etc?
Thanks once again
Chris

Re: New to the group.

callie — Sun, 07 Mar 2010 17:25:36 +0100

Also, therapy is usually not appropriate for Dupuytren's. The condition could be exacerbated by therapy.

Re: New to the group.

callie — Sun, 07 Mar 2010 17:22:33 +0100

The advice (non-advice) could be appropriate. It would have been nice to have been given more information, however. Many people who have Dupuytren's don't know it because the first symptoms do not advance much for the rest of their lives. Dupuytren's, in most cases, does not create a problem until contraction begins. What you describe is most likely a tendon sticking in the sheath. Dupuytren's produces a gradual contraction that doesn't just "pop" back into place. Also, the lumps you describe are probably ganglion cysts. These cysts are produced by escaping fluid that is eventually absorbed into the body. The cysts are similar to a hole in a tube of toothpaste, once out of the tube it doesn't go back in. It will stay as a cyst until absorbed.

It certainly wouldn't hurt to talk with another Dr. But, there is a great amount of information on the internet.

New to the group.

ValWils — Sun, 07 Mar 2010 16:33:24 +0100

I'm new to the forum and have been reading many of the posts. I hope someone can tell me where my progression is and if it is time to seek treatment. About a year ago I noticed nodules on my knuckles. Went to an orthopedist who immediately looked at my palm (which I really hadn't noticed) and said I had Dupuytren's. That was it. No suggestions, no information, no recommendations, no treatments suggested.
Now it appears that the nodules on the knuckles are less prominent, but the nodules on my palm are larger. My right ring finger is affected. Mostly during the night for some reason. It will contract my finger and my finger gets stuck in that position. I can "unstick it" and it pops back to normal like a rubber band. I also have nodules on the bottom of my right foot. No complications. I am a 53 year old female.

Obviously I want to seek treatment from someone that is ready offer some effective therapy. I live in Mississippi. Any suggestions? Oh, my older brother is also affected. So, I am assuming some kind of genetic link. Also, is it really cost effective to travel to Germany? Thanks!

Re: Radiation Therapy in the UK and Germany

wach — Sun, 07 Mar 2010 07:36:35 +0100

Chris, 4,000 Euros + travelling expenses is certainly considerable, specifically if you need to pay that out of your pocket. But you might not be needing a second round of treatment which would half the cost. Not sure whether you need to treat both hands and feet either, right?

Another option might be not to have 5 days + 5 days sometimes later but to have 7 days in one run. 7 days would result in a lower dose but would probably be sufficient as well. Of course only a doctor can tell you what is best for you ín your specific situation, I am writing this only to show that there are options.

By the way, treatment in the US is much more expensive but that won't help or comfort you, right?

Wolfgang

Radiation Therapy in the UK and Germany

ChrisI — Fri, 05 Mar 2010 23:47:00 +0100

Last year (2009) I managed to get myself referred to Weston Park Hospital in Sheffield, UK, in the hope that I could have RT on my ledderhose (both feet) and dupuytrens (both hands). No joy I decided today to phone Dr Goode's secretary in Poole but was given the information that he no longer did RT and that he was still on long term sick leave. His secretary then suggested a Dr Nicholl in the Acute Hospital in Carlisle. I phoned his secretary and was told that he no longer did RT on ledderhose because it was not approved in the UK. While it looks pretty grim as far as receiving RT on the NHS I think it would still be worth getting referred to your nearest hospital just so that the doctors there become a little more aware of the demand for this treatment. If we don't make our voices heard things will never change.

I had also emailed Prof Seegenschmiedt in Hamburg and received his reply today. He said he is no longer treating patients in Essen (he only follows up the patients that he has treated there) and that he is back at work in Hamburg. He recommended travelling out on a Thursday so that the first consultation could be done on the Friday followed by the first five sessions of RT the following week. A further five sessions would be given three months later. He approximated the cost to around 500 euros for each hand/foot for each session of five treatments. So for me the cost would be in the region of 4000 euros in total for the complete treatment of both hands and both feet - that's if treatment was thought to be suitable for me. This plus the fact that I have to travel to and stay in Hamburg really starts to get expensive. I must admit I was a little shocked at the cost. Has anyone received RT recently and if so can you give me an indication as to how much you paid and where you received your treatment?

Re: I have. had surgery to remove my Plantar Fibroma Please read

Hippo — Fri, 05 Mar 2010 07:53:08 +0100

I've had surgery on both feet. Right foot in 1993 and left foot 1997 and again 3 weeks ago. This is the worse recovery of the three surgeries. In 1997 I was putting weight on the foot at around 4 weeks out. I don't see that happening this time. I have pain when the foot is down and it tingles constantly. It is still swollen and I'm icing and elevating a lot! It was getting painful pre-surgery. I waited as long as I could. I think I have nerve damage but hope it will not hurt long term. I didn't know RT was an option but will look into it b/c I have a nodule again on my right foot (the foot done in '93). I've also had Dups in both hands and had NA done by Eaton last year and worked out great. I have a few more nodules pop on the same hand but no pain. I am an active tennis player--at least before surgery. If anyone knows of RT being in FLA, please post.

Re: Dr. Matthew A. Scott, Chicago Dupuytren's Center?

Jill — Fri, 05 Mar 2010 01:24:13 +0100

For the record, because this is a thread about Dr. Matt Scott, it should be noted that Dr. Kline strongly endorses his skill as an NA practitioner.

Dr. Scott trained with Dr. Kline for months and got extensive exposure to all manner of contactures, as well as full benefit of Dr. Kline's 6 years experience performing the procedure. I believe typical training periods with Dr. Eaton are one or two days, so Dr. Scott has well above that. Also he trained in Paris at the NA teaching hospital with all the doctors there including Dr. Lermusiaux who invented the technique - Dr. Scott is fluent in French so he got full advantage of their years of experience as well.

Any questions, give us a call, Dr. Kline is happy to talk to anyone concerning any aspect of treatment for Dupuytrens.

www.dupuytrenscenter.com

Edited 03/06/10 19:45

Re: just diagnosed at 21

shandste — Thu, 04 Mar 2010 20:23:00 +0100

thankyou for your replys, i think i have alot of reading to do on my sons behalf... it just resuring to hear from people in the same position, nobody i,d spoke to seemed to have heard of dupuytrens. jakes goin to go and buy some cycling gloves at the weekend and hopefully he,ll beable to get back into his gym routine. will post the out come of clinic visit.shandste

NA - DR. Susan Adler - Austin TX

woodyw — Thu, 04 Mar 2010 18:00:01 +0100

Just to let everyone know, Dr. Adler is taking NA patients in Austin Texas.

After 4 years my dupes is again attacking I will see Dr Adler on the 16th/17th of March and let you all know how things go later.

Clarence Woodcock

Susan K Adler MD
3705 Medical Parkway Suite 350
Austin, TX, 78705
Phone Number:
(512) 458-4224

WE NEED YOUR HELP!!!

surveyRx — Thu, 04 Mar 2010 17:31:28 +0100

surveyRx.com is conducting important medical research on hand impairments. If you are interested in participating in this anonymous online research survey please use the following link: http://www.surveyrx.com/HANDS_REG.asp

If you qualify and complete the survey you will be paid $60.

Questions??? Please email us at: info_surveyrx@cognizant.com

Re: just diagnosed at 21

jimh — Thu, 04 Mar 2010 03:25:55 +0100

21 is early, but I had signs in my 30s, I'm 58 today and haven't been unduly hampered by this disease. I've had 2 surgeries, but there are better options now, and probably even better ones coming. So my main piece of advice is - don't be rushed into surgery, especially at a young age, because the accumulation of scar tissue tends to close off other, better treatments later on. Start researching NA (needle aponeurotomy ) which I've also had and recommend. Xiaflex injections are just getting started and may be another good alternative in the near future.

Edited 03/04/10 03:31

Re: Dr. Matthew A. Scott, Chicago Dupuytren's Center?

Dan — Thu, 04 Mar 2010 02:14:06 +0100

It disappoints me to read some of the above entries, especially the entry by Dr Grabow. I personally have had a bad experience with Dr Grabow. To see him go out of his way to bash other doctors on a public forum page is a disgrace and a reflection of a poor character. It is this type of arrogance which will always prevent NA from being more readily available in our country. Although the NA technique has been practiced in Europe by non-surgeons for years and is the standard of care there, it is diffcult to fine doctors trained in NA in the USA. Why is this? Why has this simple procedure been so slow to catch on in America? It saves people time, money, and hardship. Unfortunately, it is discussions like the above that preclude this procedure from being the standard of care in America. "Doctors bashing doctors" indeed ... What is the incentive and how does this reflect on Dr Grabow to bash other Drs who have been trained in this procedure and who are offfering it in our country? And is there really any better training than to train with French (Rheumatologists and non-surgeons) who invented the technique, perfected the technique and have practiced the technique for decades?

Dr Grabow's entry is confusing. Don't all American Drs get trained in human anatomy? And are the extra two years of residency devoted exclusively to Dupuytren's Disease and NA? I doubt it. Ultimately, all these questions just confuse and obsure the argument for NA itself.

I have reserached this for a while, and I know when I have my hand done who I will see and who I won't. This country doesn't need another Dr (like Dr Grabow) soliciting our business at the expense of others.

Re: just diagnosed at 21

deeproot — Thu, 04 Mar 2010 00:09:18 +0100

Sorry about the news, mine started when i was 25 (now 34) and I am also in manual labor (electrician). I do not have contracture but have nodules. The first nodule was mistaken for a cyst, during surgery they realized it was Dupuytrens. This website is great for information on differing treamtments. I would suggest taking some time going through some of the literature available on side of screen under Home. Hopefully the drs. will be knowledgeable at the clinic. I would not hesitate to ask some of the people on this forum about the treatment they decide. Many on here have a lot of knowledge about this disease. Take care!