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Treatments Your Doctor Won't Tell You About
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06/11/2008 16:59
Megan 
06/11/2008 16:59
Megan 
Treatments Your Doctor Won't Tell You About

Today there was an article on MSNBC entitled "Treatments Your Doctor Won't Tell You About: Vital Options May Be Witheld Out of Personal Bias or Lack of Training." Timely. I saw two reputable hand surgeons in Seattle in April regarding my Dupuytren's nodule (Drs. X and Y). Both gave me the "Watch and Wait; Come Back for Surgery When Your Hand Contracts." When I told Dr. Y I was distressed about the diagnosis since I am a professional musician, he added that mine might never progess so don't worry...but if it does, surgery is my only option.

So, I was a little shocked when I saw my General Practioner last week for my annual exam; I mentioned the Dupuytren's and showed her the nodule. She said she routinely sends patients like me to Dr. Y for steroid injections. She asked if I would like a referral. I told her not to bother as I had already seen him and he hadn't even mentioned them to me. When I got home I called his office and asked the receptionist whether Dr. Y offers steroid injections for Dupuytren's nodules and she said "yes, we do them all the time."

I hate to be a conspiracy theorist...but???? I don't know what to think. Would he have had some medical reason for not mentioning steroid injections to me? I am sad, angry and baffled and I will not see any of these surgeons in Seattle; I am going elsewhere.

06/11/2008 17:35
callie 
06/11/2008 17:35
callie 
Re: Treatments Your Doctor Won't Tell You About

Megan,
I think there is a warranted feeling that the less you mess with Dupuytren's, the better. The disease often can be stimulated to become active in various ways, but not fully understood. I know many people who have had the nodules for much of their life and that is the extent of their Dupuytren's. Often there is no advancement to the contracture stage. So, the Doctor was probably following the idea of not to mess with it unless it was really causing you a problem.

06/11/2008 19:27
Megan 
06/11/2008 19:27
Megan 
Re: Treatments Your Doctor Won't Tell You About

Hi Callie,

Yes, I understand, but if you wait until it is bothering you, wouldn't that limit your treatment options? Although I have read about surgery causing the condition to accelerate, I have not heard about either steroid injections accelerating the disease. Does anyone else have any information about this?

Megan

06/11/2008 20:48
pixi 
06/11/2008 20:48
pixi 
Re: Treatments Your Doctor Won't Tell You About

Interesting, Megan. You might have mentioned it before, but do you mind my asking your age and if other members of your family have DC? I'm 33, and as far as I know only my mother has it. We have surmised that previous generations in our family must have had it but might not have identified it because the disease never progressed much. So, it could very well be that you never have to see the knife.

The surgeon I saw in London told me the same thing: "have surgery on the knuckle pad if you want, then watch and wait in regards to contracture." When I did some investigating and asked him for a referral for radiotherapy, he refused. His secretary merely said he did not feel strongly about the treatment. I pressed for more of an answer and received a detailed email from him saying he doesn't have experience with radiation and so cannot prescribe it, but that he would be interested to know how it goes for me. So, in my case, the doctor never brought it up because he simply didn't know enough about it.

06/12/2008 00:32
Megan 
06/12/2008 00:32
Megan 
Re: Treatments Your Doctor Won't Tell You About

Hi Pixi,
I am 48. I realize now that my grandmother had it, but that it had never been diagnosed. She had been hit by a car around 30 years ago, and after that car accident, her ring finger and pinky began to curl in towards her palm. Everyone thought it was because of the car accident, but now I realize she had Dupuytren's. As she got older, it got worse; she couldn’t crochet anymore and she said to my sister, “I can’t straighten out my pinky or my ring finger; I don’t know why.”
My gripe against the doctors is that the only information they gave me was “watch and wait and then come see me for surgery if and when you get a contracture.” Neither of them told me that there were other, earlier treatment options, even when one of the doctors performs steroid injections in his own clinic. Since no one can say whether mine will or will not progress, I strongly feel that they should at least have told me about available treatments, even if they don’t offer those treatments in their own office. The Mayo website says “early detection and treatment of Dupuytren's contracture may slow the disease's progression and reduce your risk of problems later on.”
As I mentioned in another post, I plan to go to Boise next week for a consultation with Dr. Klein and, if he recommends it, I will get the steroid injections and follow-up with radiation. Since I make a living playing an instrument, I would like to avoid surgery, although I imagine that people who don’t play instruments would like to avoid surgery, too!
My own General Practitioner was not aware that radiation was used to treat nodules, but she was interested, and gave me a “go for it.”

06/12/2008 06:27
Randy_H 
06/12/2008 06:27
Randy_H 

Re: Treatments Your Doctor Won't Tell You About

Megan,

Your experience with Certified Hand Surgeons (CHS) is unfortunately all too common. I believe the reason is the general conservatism in the profession. You would think that the top specialists would want to be on the cutting edge, as a few like Denkler/Eaton and others are. However, the majority would rather sit back and just keep doing the same old thing. As an example, Dr. Charles Eaton lead a team of experts explaining new treatments to a meeting of the American Society for Surgery of the Hand (ASSH). This made little impact.

The cortisone injection treatment I received from Kline made my nodules smaller, softer and less painful. Meanwhile the full Open Surgery I had on the other hand did seem to trigger the subsequent spread. I play drums so the articulation of the fingers is not *as* important as with other instruments but my typing is now apparently shot for life and about half speed. While I had an *unusually* bad reaction to surgery, that is much more common than a bad reaction to the shots. I will return to Kline or Denlker if I can't find someone in LA who is thinking a little out of the box of the usual surgical handbook.

While my UCLA CHS admitted Eaton's NA was the better treatment for me than his prior Open Surgery, he *still* will not perform it. He is a former head of the ASSH. Apparently a real pessimist on alternatives. After that I'm not sure even raising someone from the dead would change minds either :-)

06/12/2008 12:42
TrevB 
06/12/2008 12:42
TrevB 

Re: Treatments Your Doctor Won't Tell You About

Quote:



While my UCLA CHS admitted Eaton's NA was the better treatment for me than his prior Open Surgery, he *still* will not perform it. He is a former head of the ASSH. Apparently a real pessimist on alternatives. After that I'm not sure even raising someone from the dead would change minds either :-)



Sounds like he's in the wrong job. Their job is to treat patients in the very best possible way, including using new technology and methods. That superior attitude stinks and anyone who has it shouldn't be in the profession IMO


Cambidgeshire, UK.

Edited at 06/12/08 15:43

06/12/2008 15:43
Randy_H 
06/12/2008 15:43
Randy_H 

Re: Treatments Your Doctor Won't Tell You About

Actually TrevB, the MD of which I speak is among the most highly regarded CHS in American. I have had younger CHS actually want to see the scars he left behind. I'm serious! He belongs there all right, but for me as a symbol of how *utterly* conservative these guys are. It's profound.

On the other hand (so to speak) we as patients have made an End Run around this Brick Wall by reaching other patients on the Net. The previous BioSpecifics Forum was used in this way to bring NA from France to the US. Yes, we needed an open mind like Eaton (rare) to do it, but without that Forum Eaton would still just be doing the standard surgery, and from what I hear, not as well as my UCLA surgeon.

We as patients just need to know what we are dealing with in regards to this profession and act accordingly. Do your own research.

06/12/2008 18:07
Megan 
06/12/2008 18:07
Megan 
Re: Treatments Your Doctor Won't Tell You About

Hello TrevB and Randy, Thank you for your responses. It is dispiriting. I'm trying to think of something "pro-active" I can do....I am planning on writing to the Seattle Times and asking them to do an article about this (I’m imagining something like the article about Dr. Kline in the Idaho Statesman) and also writing to Swedish Hospital, one of the big hospitals here in Seattle and saying, "Look....You're not offering these treatments? Why? People are going out of the state (and out of the country) to see doctors who are..."

06/18/2008 05:40
paul5555 
06/18/2008 05:40
paul5555 
Re: Treatments Your Doctor Won't Tell You About

Hey Megan, I am 36 and play guitar for a living. Got my first nodule in my left hand about 2 months ago. It definitely made playing guitar a little harder. It felt like my hand cramped up a bit when playing.

Got a steroid injection about 2 weeks ago and it feels like my hand has relaxed quite a bit since then. Playing is easier, and the nodule is also a bit smaller. Now I am feeling more confident that Dupuytren's is not going to slow down my career.
Still thinking about the radiation though, just to be safe.

This site is amazing. Thankyou so much for everyone who has shared their stories on here. It has been great to balance out the doctor's opinions, with the opinions of people on here who are actually struggling with the disease.

It certainly helped me, knowing that other people had success with steroid treatments.
Hope this helps you.

Paul

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