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Newbie --diagnosed today
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02/09/07 09:13
Peter 
02/09/07 09:13
Peter 
Re: Newbie --diagnosed today

Hi there guys & girls - I have been watching this forum for some time now.
I also had the small bump or what I thought was a cyst at the start of 2006. Went to hand surgeon in Cape Town, South Africa and was basically told that it was DC and that nothing could be done until it was nearly claw-like then surgery! I paid a lot of money for this idiot to basically write the name of the affliction on a pice of paper and he told me to get the info and reseach done on the internet.
Obviously I freaked - the first site and pictures I saw was of major surgery for very advanced DC (it seems that the site is no longer....?)

DC has progressed from the front of the palm towards the wrist and on two of the tendons... each growth now approximately 4cm in length. In December 2006 I noticed the small bump in my left-hand which was exactly same as my initial diagnosis. I was obviously upset that the other hand would also get damaged... but resolved myself to accepting and living with it.

In January 2007 my young son had a serious skateboarding accident - ripped his left hand from palm to tip of index finger - it looked exactly like DC surgery - 44 stitches later in emergency, and I met another surgeon. He confirmed that that's what I would look forward to.... Mmmm

I am always into alternative treatment and liked what I saw and read with regard to Radiotherapy. I was also appalled that after downloading all relevant docs and results - and showing it to 3 surgeons, did not get much of a response... however the one did mention that the results in Germany looked good and that if he had DC - he would opt for the RT. I will never forget his comment when he told me that I should remember that he was a surgeon... and his job is to operate.... TALK about vested interest in making money ....

After knocking at many doors I finally found a Flemmish medical Professor in one of South Africa's biggest teaching hospitals, who knew of DC and has successfully been treating Peyronie's with RT. I had to contact him personally and not one of the doctors or surgens I contacted were willing to refer or help me in my quest for info - all said surgery was only option.

Had my first RT treatment yesterday on my right-hand... and will have second today. REMARKABLE - I thought I could already feel a difference in the nodules - softer this morning - thinking it was my mind - I asked my wife to press on it and she immediately mentioned it felt softer!
Needless to say - my medical aid has refused to pay for the treatment saying it was "not an approved treatment - only surgery was' - so the battle will start!

I hope to keep everyone updated - I found out that I was the first patient to have RT on DC yesterday - and I thought having all the Nurses, Doctors and Radiotherapists there was because of my charm! All very exciting.....

02/09/07 14:05
run4fun

not registered

02/09/07 14:05
run4fun

not registered

Re: Newbie --diagnosed today

I'm having RT in Germany next month and can't wait. The doctor will write a prescription for me for the second round of treatment six weeks later so I can take to a closer doctor with instructions in hand (no pun intended).

Did you have any side effects, such as redness or dry skin? Was it outwardly visible? Is it really five minutes per day and that's it? Big thanks to the Internet...where would we be?

02/09/07 15:33
Peter 
02/09/07 15:33
Peter 
Re: Newbie --diagnosed today

Hi there - listen the treatment that I'm getting is for 21Gy - that means 2 - 3 minutes of RT per day at 3Gy for 7 days (but the doc seems to think that 5 days should be fine)

No redness first day, just felt warm... as if a bit sunburnt, but really near the DC only. Not uncomfortable at all. Slight tingling though... but I had it done at 2pm yesterday afternoon... and by 8/10pm it was fine. I felt tired last night - but I suppose it's all the apprehension and tension that goes with the territory. No redness or dry skin experienced with first treatment.
Today's treatment was ok as well... no problems and I am virtually vertain now that slight softening has already occurred, which seems to be confirmed by the docs who agreed that benign tissue can show results far quicker than other malignent tissue.
The docs have agreed that I can take a camera into the RT room to take shots of me & the machine, positioning etc. We also have a film production company interested in documenting the treatment as well as looking at doing some PR to make more people and medical staff aware of the DC as well as ALL the treatments available....

So lets see what transpires....... I have to miss treatment this weekend and will only have next session on Tuesday - but will keep everyone informed. I am just so relieved that RT treatment might well be available in the future here in SA.

02/09/07 16:00
ademas 
02/09/07 16:00
ademas 
Re: Newbie --diagnosed today

Good morning.

I met with a hand surgeon yesterday, and he recommended (what I believe to be, based on my reading last night at http://www.plasticsurgerysf.com/dupuytrens/ ) the Limited Fasciectomy or Segmental Fasciectomy (if I wanted to try something less invasive than the Limited Fasciectomy.)

The problem he seemed to have with the NA procedure is the lack of published, peer-reviewed science (my words, not his.) I get the same impression from my primary care physician, who has printed out and mailed me several articles from websites he subscribes to (Cleveland Clinic Journal of Medicine, www.uptodate.com, www.aaos.org ) The only article that even mentions NA states that "Other interventions, including needle fasciotomy, continuous slow skeletal traction, dimethyl sulfoxide, vitamin E, allopurinol, physical therapy, ultrasound therapy, steroid injections, interferon, and splinting have generally not been successful."

The surgeon I met with wasn't entirely adverse to the NA procedure, but his reaction seemed cautionary at best. He said if I chose to pursue the NA procedure, I should be sure to first ask the doctor about the incidence of digital nerve damage, as NA is a relatively blind procedure.

Interestingly enough, the surgeon I met with also has Dupuytren's. He's had palmar nodules for about 10 years, but no cords or contracture thus far. He did add that he wouldn't choose the NA procedure for himself if he were in my place, based on the information now available.

I emailed 2 pictures of my hand to Dr. Benhaim @ UCLA last week, and he responded immediately. Based on the photographs, he said it appeared I would be a good candidate for the NA procedure.

So...for all my studying and footwork...I'm more confused than ever about which direction I want to go.

I do have a couple of questions:

1) What is the incidence of digital nerve damage with the NA procedure, as opposed to the standard Fasciectomy?

2) The term "blind procedure" kind of freaked me out. How do they avoid digital nerve damage? From what I've read, it's not...say...like arthroscopic surgery, where the surgeon is actually viewing what they are doing.

3) Does the NA procedure address the palmar nodules at all, or does it only address the contracture?

I hope I don't sound like I'm siding with the surgeon I met with, because that's simply not the case. I'm still leaning heavily towards the NA procedure. It just seems the more I read and the more doctors I talk to, the less sure I am.






02/09/07 16:37
wach 

Administrator

02/09/07 16:37
wach 

Administrator

Answers for NA

Ademas, no need to freak out because of the "blind" procedure, that term is just misleading. Actually I don't think your doctor is very familiar with NA. But let me respond to your questions:

1) What is the incidence of digital nerve damage with the NA procedure, as opposed to the standard Fasciectomy?

A: surgery causes about twice as often (or more) nerve damage than NA. That's not surprising because when you cut out the cord, the chance that you also cut a nerve is higher. With NA the patient is fully concious, feels when the needle is getting close to a nerve, and can tell that to the doctor. The doctor will then needle elsewhere.

2) The term "blind procedure" kind of freaked me out. How do they avoid digital nerve damage? From what I've read, it's not...say...like arthroscopic surgery, where the surgeon is actually viewing what they are doing.

A: see above. NA is the definitely the safer procedure. When comparing NA and surgery then it is only fair to not include "skin rupture" as side effect of NA because that skin rupture is nothing compared what is normal result of surgery. When you exclude skin rupture then surgery with about 15 - 20 percent side effect in total compares to about 2 percent of NA. If you are interested in details, you might have a look at the surgery (e.g. Denkler's data) and at the NA page of this web site.

3) Does the NA procedure address the palmar nodules at all, or does it only address the contracture?

A: it breaks cords and, to my knowledge, is not applied to nodules. If you have just tiny nodules I consider radiotherapy the best choice.

Wolfgang

02/10/07 17:55
tosw 
02/10/07 17:55
tosw 
Re: Newbie --diagnosed today

I was recently diagnosed with DC and my Doc put me on MSM which is Methylsulfonylmethane for three months. Any one heard of this treatment?

02/14/07 10:42
Monica 
02/14/07 10:42
Monica 
Re: Newbie --diagnosed today

Thanks Wolfgang! Appreciate the advice and support

Quote:



It is difficult to predict individually which therapy helps or which has severy side effects. One of the characteristics of Dupuytren is that patients react quite differently to specific therapies. The best advice is to not get scared, to not let this disease spoil your life, to get informed as well as possible, to always consult with your MD, and to finally decide for the therapy that you and your doctor consider best.

Good luck to you!

Wolfgang


02/14/07 10:46
Monica 
02/14/07 10:46
Monica 
Re: Newbie --diagnosed today

Thanks Elinor, Ellen, Mark, and everyone else who has replied. Very glad to have this forum and not feel alone. I am not as scared as I was initially thanks to all the info.

Quote:



I was just diagnosed with Dupuytren's today after going back and forth between several doctors...

02/14/07 10:52
Monica 
02/14/07 10:52
Monica 
Re: Newbie --diagnosed today

Quote:



Steven

Your hand doc apparently still thinks the World is Flat. The data that clearly shows that NA is safer than Open Surgery (OS) was presented to the American Society of Surgery of the Hand (ASSH) at their last national conference. He probably wonders why you complain of pain because he's apparently been taught that it's painless. Another example of his rigid ignorance.
****
There may be a correlation between your foray back into karate and your Dups onset my friend. Trauma to the hand *is* sometimes related.



Randy--Nice to hear someone say there may be a relationship between hand trauma and onset of DC. I am convinced that one of the reasons for my early onset was hand trauma--injured the same knuckles that are affected now not long before the knuckle pads showed up and the exact same thing with the finger that has the contraction (which was also the subject of an earlier bike accident requiring months of physical therapy).....


02/14/07 10:54
Monica 
02/14/07 10:54
Monica 
Re: Newbie --diagnosed today

Quote:



Randy,

thank you for your reply. I am going to follow up with a Dr. Pess In Central Jersey. He is about i hour south of me.

To anyone in New Jersey here is a link.
__________________________________________________
Steve---
Thanks for the link....I am also in NJ! Wonder if we have the same doctor who "thinks the world is flat" ; )

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available   treatment   Radiotherapists   thought   dupuytren-online   therapy   apparently   because   Dupuytren   surgery   Fasciectomy   correlation   plasticsurgerysf   surgeon   trauma--injured   centraljerseyhand   characteristics   procedure   Methylsulfonylmethane   knuckle