Hi,

I have posted on this site in the past regarding my frustrations of having D.C. And my time consuming search for some sort of alternative treatment. I thought I had found the perfect place to receive some sort of radiology treatment & or injections in my not yet contracted nodules. After reading such a thorough and in depth report of the new treatments available to patients with D.C on the Mayo Clinics site, I thought I had found the perfect place to go. I live in Nevada and Mayo Clinic is in Arizona, how convenient is that? I didn't even have to travel half way around the world,like others have had to do. Needless to say I made a appointment to see a doctor there right away and began making arrangements for my husband and myself to drive to Scottsdale. We were advised to a lot a weeks period of time to ensure the proper time for any tests the doctor might want to do. It was a costly expenditure for us to take on at this point but we felt it would be well worth it in the long run if they could help me. I tried to call and speak to a doctor before our trip just to verify that these cutting edge treatments were in fact done at the Mayo Clinic. Unfortunately all I was told was that only by coming in and seeing a doctor can he determine what can or can't be done. So we proceded with our trip knowing there were no guarantees for anything, all we had was a hope and a prayer.

We have just returned from our trip and as before I wanted to post about it, for others that also are in my shoes. I want to share with you a big WARNING. Do not assume anything about any clinic or doctor ! Find out verbally for sure what they do, make sure you see it in witting, exactly what procedures are done. My big mistake was assuming they did the procedures they described when unfortunately they didn't, the information I read that they put out was for educational purposes only. I personally think the Mayo Clinics material was misleading, due to the fact that it didn't specifically state that these procedures are in test trials and not done at Mayo Clinic. I take responsibility for my part, I truly was so anxious for some sort of help I was in denial, I didn't want to think that they might not perform these procedures.......Oh Well, Live and learn !

That aside, I must say the Mayo Clinic is a awsome medical facility, it lived up to it's reputation in my book. I saw a handful of doctors there and I have never seen such good doctors before in my life, there exams were so thorough and they were downright brilliant. They left no stone unturned and although I didn't get the procedures I wanted, I did get a compleat and thorough evaluation and even some new diagnosis on top of that. I left there knowing that I had the best medical care there is, I had a couple referrals for new doctors to see when I returned home
(to be continued in next post)

Terry,

the injection of collagenase is in trial phase 3 and only a limited number of clinics participate in this trial and even they accept only a limited number of patients. But collagenase injection is anyway suitable only for contracted fingers and would be of no help for you in your early stage of Dupuytren's disease.

Radiotherapy is not in test trial, it is a well established treatment e. g. in Germany, it is just not that popular and readily available in the U.S..

Regarding the web site of Mayo clinic I of course agree that they ought to indicate which therapies they offer themselves. Maybe they do that on their specific clinic web site. It's very unfortunate that you did your trip and were disappointed to some extent, though you obviously met some expert doctors there. Personally I am very happy that Mayo updated their web site to also describe and acknowledge available therapies other than surgery. This medical information from Mayo is frequently copied to other web sites and Mayo is an excellent multiplier. We do hope that they will eventually raise visibility of both, NA and radiotherapy, in the US. And, maybe, one day they will offer those therapies themselves!

Wolfgang

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... I personally think the Mayo Clinics material was misleading, due to the fact that it didn't specifically state that these procedures are in test trials and not done at Mayo Clinic. ...

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Dr. Grabow, I looked at your web site but if I click on "Dupuytren's Clinic" I'm asked for a logon (name and password).

Consider contacting Dr. Penny Sneed who heads up the Radiation Oncology department at the UCSF Medical Center in San Francisco ((415) 353-8651. She is a former researcher with Dr. Seegenschmiedt and she supervised a series of X-Ray treatments for my hands. Dr. Snead and her entire staff are wonderful.

As this is a teaching school they take a very different approach than the average oncologist whose primary concern is avoiding any liability exposure from performing what the medical community (AMA) considers to be an experimental procedure.

Nice reason to visit San Francisco with your husband.

To: Mayo Clinic Update
Mayo is great but not perfect. I went to Scottsdale with very serious chronic pain and chronic fatigue in 1990 with what I later learned was Fibromyalgia. I got the same treatment there as in Sacramento. Lots of expensive tests (there is no lab test for FM), but minimal listening to my symptoms, and no tender point test. After much expensive investigation my primary care doctor told me that it was in my head and I should see a psychiatrist. In 1998 I came across a 1989 book titled "Chronic Muscle Pain Syndrome" = fibromyalgia. Took this hypothesis to a rheumatologist, who affirmed the problem. I joined a support group, learned how to manage my FM, and improved greatly.
No thanks to Mayo. But they got a bunch of my money.
Certainly doctors have a difficult job. But I wish they would listen more.