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Mayo Clinic Update
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09/19/08 22:55
LVTerry

not registered

09/19/08 22:55
LVTerry

not registered

Mayo Clinic Update

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)

09/20/08 07:34
Terry

not registered

09/20/08 07:34
Terry

not registered

Continuation of Mayo Clinic Update

Ultimately it was well worth it to get such a revamp of everything medically I have to deal with. The better treatment I get for my other issues now can only be a asset for me in the future in preparing for when my fingers do start contracting. I did also find out I a have trigger finger, which is where all my pain is coming from and I do have a couple nodules on my foot. I was diagnosed with fibermialgia o top of the arthritis I already know about....OMG should I order my scooter to get around now LOL . Sheesh, I still feel it's better to know about what you have, the knowledge helps in dealing with it.

So I guess now my plan is to just deal with my other medical issues in the way of getting them under control . There is a really good new hand doctor in Vegas that I may go ahead and get my trigger fingers taken care of . Other than that all I can do is hope that it will be a long long time before my contractures start. When they do I'm off to L.A. Where there is a well known doctor that does N.A. I hope that someone out there gets something out of my story and experiences. By sharing our experiences with each other, It truly makes us stronger and better able to cope with anything, so I look forward to reading your stories also.


Terry

Terry, I added your post into this thread because I think it really belongs here, and I deleted the other, seperate topic to avoid confusion. Hope you don't mind! -- Wolfgang (Admin)

09/20/08 07:54
wach 

Administrator

09/20/08 07:54
wach 

Administrator

Re: Mayo Clinic Update

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

Quote:



... 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. ...

10/10/08 11:48
DoctorGrabow

not registered

10/10/08 11:48
DoctorGrabow

not registered

Re: Mayo Clinic Update

Dear Terry,

I can understand your frustration. Traveling a far distance to see a doctor only to find that they do not treat your particular problem or do not offer the latest treatment options is certainly aggravating. Since you live in Nevada the Mayo clinic certainly is a conveinient location. LA is also a quick flight as well. However, if you are not interested in traveling and still are looking to have your Dupuytren's treated percutaneously have you considered Henderson? I am a board certified Hand & Upper Extremity Surgeon specializing in the treatment of all problems of the hands, wrists, elbows, and shoulders. Additionally, I am trained in the percutaneous treatment of Dupuytren's contracture. I will be lecturing at St.Rose Dominican on several hand topics in November and on Dupuytren's treatment in December. If you would like to learn more please visit my website: DoctorGrabow.com. I wish you all the best.

Sincerely,

Ryan J. Grabow, MD

10/10/08 19:43
jimh 
10/10/08 19:43
jimh 
Re: Mayo Clinic Update

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).

10/13/08 12:41
DoctorGrabow

not registered

10/13/08 12:41
DoctorGrabow

not registered

Re: Mayo Clinic Update

Sorry about the access code. The page was updating. It is now working fine.

Ryan Grabow, MD

Quote:



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).




10/22/08 23:53
bstenman 
10/22/08 23:53
bstenman 
Re: Mayo Clinic Update

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.

11/13/09 05:09
ntvinh986 
11/13/09 05:09
ntvinh986 
Re: Mayo Clinic Update


Hi all!
I've just visited this forum. Happy to get acquainted with you. Thanks.

__________________
Watch Anime Episodes

11/13/09 08:11
tds333 
11/13/09 08:11
tds333 
Re: Mayo Clinic Update

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.

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collagenase   treatment   Dupuytren   information   responsibility   Fibromyalgia   specifically   fibermialgia   Continuation   Radiotherapy   medical   rheumatologist   investigation   Unfortunately   experiences   procedures   percutaneously   arrangements   contractures   Seegenschmiedt