Forum for Dupuytren's contracture

Re: Radiation Therapy advice needed

IJ300 — Sat, 04 Feb 2012 11:40:34 +0100

I am 24 and received my first round or RT in Germany by doctor S about 3 months ago, I am due to see him again soon for my second round of RT. The nodules in my hands looked just like yours did.
It is up to you whether you get the RT or not since there is a higher risk of cancer, especially at such a young age, but according to Dr. S and some of the members here the chances of getting cancer are very low. Dr. S told me that there is a 0.5-1% increase within the first 10 to 20 years.
From my personal experience, I am glad that I had the first round of RT done because I have noticed the two main nodules (mid hand under ring finger, one on top of the other) in both my hands slightly shrank. However, my left hand is worse than my right hand is, and even though the nodules did shrink, my ring finger feels like it is being pulled in by a cord more so than ever.

Re: Radiotherapy in Germany

clarissa45 — Sat, 04 Feb 2012 11:20:09 +0100

i am newly diagnosed with DD in both hands - nodules for a year and a thumb cord for two months. i am scheduled to see a hand surgeon for what i thought would be collagenase and then someone in charlotte nc for RT. after reading this post i think should go to gemany. In someones post (John-personal experience) he said the Germans said do not do RT in the US. Is there no one with enough experience?

No one has discussed US insurance and German RT. Has anyone been reimbursed?
Thanks,
Marge

Re: Amputation option

spanishbuddha — Sat, 04 Feb 2012 10:25:17 +0100

Suzuki12:
I have had NA twice and surgery once on my pinky finger. Last surgery was 16 months ago and the finger is contracting again. Surgeon has advised he can do surgery again with limited expected results and has suggested I may want to consider amputating the pinky finger when it gets much worse. Angle is at about 40 degrees now with no pain and virtually no limitations on ability to use hand.
Canada has not approved the collagenase injection so if that was chosen I would need to travel to USA for treatment and pay costs. By the way, how much does it cost?

Just wondering from those who have done this how it's all worked out for you. Does your hand work ok, how long a recovery did you experience, are you happy with your decision?

Thanks, Glenn

This thread might help:
http://www.dupuytren-online.info/Forum_E...nds-0_1143.html

Amputation option

Suzuki12 — Sat, 04 Feb 2012 05:26:50 +0100

I have had NA twice and surgery once on my pinky finger. Last surgery was 16 months ago and the finger is contracting again. Surgeon has advised he can do surgery again with limited expected results and has suggested I may want to consider amputating the pinky finger when it gets much worse. Angle is at about 40 degrees now with no pain and virtually no limitations on ability to use hand.
Canada has not approved the collagenase injection so if that was chosen I would need to travel to USA for treatment and pay costs. By the way, how much does it cost?

Just wondering from those who have done this how it's all worked out for you. Does your hand work ok, how long a recovery did you experience, are you happy with your decision?

Thanks, Glenn

Re: Had NA on 3 fingers - insurance paying less for the 2nd and 3rd - help with appeal?

MaryD — Sat, 04 Feb 2012 04:25:42 +0100

I wrote a lot of notes when I spoke to a rep on the phone prior to the procedure. I wrote down a question "can it only be 2 at a time?" but I don't remember what she said!

At the time I spoke to her I was only thinking of having two fingers done, but when I got to the office I decided to have another one done even though it wasn't really bad, since it progresses so rapidly for me. I didn't want to have to go back to Chicago and pay another office visit. It seems like even if she said "yes" to the limit of two, they should pay the same amount for two fingers (and then limit payment for the third).

I will be calling them on Monday, but I just wondered if anyone else had encountered this. .Any advice is appreciated.

Re: Had NA on 3 fingers - insurance paying less for the 2nd and 3rd - help with appeal?

callie — Sat, 04 Feb 2012 03:59:54 +0100

Did you check with the insurance company prior to having the procedures? What did they say when you told them you were going to have NA on three fingers in one day?

Had NA on 3 fingers - insurance paying less for the 2nd and 3rd - help with appeal?

MaryD — Sat, 04 Feb 2012 03:53:11 +0100

Hello - I recently had NA on 3 fingers on the same day. Just got my EOB and they paid less on the 2nd and 3rd finger ad the steroid injection into a nodule. Their reason: "You have reached the maximum allowance your plan covers for multiple related surgeries." I obviously had it all done in one visit.

Has anyone had any luck appealing something like this?

Any advice would be appreciated.

Re: Radiation Therapy advice needed

GaryBall — Sat, 04 Feb 2012 01:11:06 +0100

Hi Anthony,

I had my consultation with Prof S 3 weeks ago.......I too was concerned about the cancer......so I grilled him......for my circumstances he had some data which added up to 0.5 percent risk increase....he emphasized the low dose for the treatment......30gy........from memory cancer patients would often be given 55gy.......in soft tissue.....which would be more suseptable for cancer than hands and feet.......Prof S. Was more concerned about the affects of radiation drying out the skin.

The point Larry makes regarding everyday life activities increasing cancer risks is very powerful to me......prof s. Also touched on these things such as the exposure airline pilots get.....etc....

We all have to way up the pros and cons regarding our condition......and the treatment that we are happiest to pursue.....for myself the prospect of advanced stage dups and ML was far more frightening than the seemingly small increase risk with cancer......I am very pleased to have made the decision to spend money I don t have to travel to Germany and meet with him.......even if my treatment fails.......I will still feel that I invested in the best statistical chance that I had for a favorable outcome......BUT!!!!!.......I am not you.......you may see it all very differently.......

I will continue watching these posts and wish you the best....whatever you choose...

And for Jessie........I think you have had some great advice on this thread.......from people that have been dealing with this for a long time........I hope you can formulate a plan that you are happy with.....I wish you the very best...

Gazza

Ant
Hi Jessie
It is soooo difficult to make an informed decision on whether RT will have a long term effect relating to cancer (particularly in relation to treatment on younger patients). There just doesn't seem to be a huge range of research available that looks at the long term affects. Dr S in Hamburg doesn't seem to have had many (or any) problems but I think his follow ups only go back 13 years, so there is nothing conclusive long term.

....

Ironically I am booked in to see Dr S in Hamburg in two weeks for RT but I cannot make myself pay for the flights as my mind constantly switches from go to don't go.(it seems every 10 minutes) ...
[/quote:

Hi Anthony,

Have you decided yet ?! To go or not to go that is the question (free from Mr. Shakespeare !)

You are a believer of science and statistics .... So you may follow me an my questions for YOU:

Credibility of Research & Studies !?

> Did you find a surgical series in Dupuytren's Disease with follow-up longer than 5 years ?

> Did you find follow-up period longer than 5 years for any other treatment modality ???

> To believe it or not:
RADIATION THERAPY provides the LONGEST FOLLOW-UP evidence of all therapies so far ... !

What are the risks ??

> Possibly CANCER ! Have you found any report about that after radiation of the hand ? And ...

> Do yOU protect YOUR HANDS from sun-light througout YOUR LIFE - thta's a much higher risk to get cancer there !

> Do you NOT USE your hands to steer a car through western type traffic : MUCH MORE DANGEROUS ! Stop driving ...

> Do you use YOUR HANDS to EAT TOO MUCH ! Overweight produces CANCER ! Stop doing it ...

> Do you use YOUR HANDS to DRINK ALCOHOL or HOLD A CIGARETTE ! Stop doing it ...

There are many more risks about your hands and "DANGEROUS EXPOSURES" rather than some radiation dose which helps you to avaoid hand surgery which has an overall risk of complications and side effects of 15% OVERALL!

LIFE IS SURELY RISKY and RADIATION is only a izzy bizzy PART of it

Believe in the benefits and argue with the Prof. Seegenschmiedt if you are going to meet him !

Edited 02/04/12 09:48

Re: Vitamin B-12 deficiency

newman — Fri, 03 Feb 2012 23:49:26 +0100

You will know if you are deficient in B12. By 5pm you feel worn out and would like a small nap. I discovered I was deficient in B12 during an examination by a physician. Supplements are are waste of time and money if you dont need them. The Prof is correct.

Edited 02/03/12 23:51

DOUBTS about RADIOTHERAPY and RADIATION RISKS

Larry — Fri, 03 Feb 2012 21:53:09 +0100

Anthony:
Hi Jessie
It is soooo difficult to make an informed decision on whether RT will have a long term effect relating to cancer (particularly in relation to treatment on younger patients). There just doesn't seem to be a huge range of research available that looks at the long term affects. Dr S in Hamburg doesn't seem to have had many (or any) problems but I think his follow ups only go back 13 years, so there is nothing conclusive long term.

....

Ironically I am booked in to see Dr S in Hamburg in two weeks for RT but I cannot make myself pay for the flights as my mind constantly switches from go to don't go.(it seems every 10 minutes) ...

Hi Anthony,

Have you decided yet ?! To go or not to go that is the question (free from Mr. Shakespeare !)

You are a believer of science and statistics .... So you may follow me an my questions for YOU:

Credibility of Research & Studies !?

> Did you find a surgical series in Dupuytren's Disease with follow-up longer than 5 years ?

> Did you find follow-up period longer than 5 years for any other treatment modality ???

> To believe it or not:
RADIATION THERAPY provides the LONGEST FOLLOW-UP evidence of all therapies so far ... !

What are the risks ??

> Possibly CANCER ! Have you found any report about that after radiation of the hand ? And ...

> Do yOU protect YOUR HANDS from sun-light througout YOUR LIFE - thta's a much higher risk to get cancer there !

> Do you NOT USE your hands to steer a car through western type traffic : MUCH MORE DANGEROUS ! Stop driving ...

> Do you use YOUR HANDS to EAT TOO MUCH ! Overweight produces CANCER ! Stop doing it ...

> Do you use YOUR HANDS to DRINK ALCOHOL or HOLD A CIGARETTE ! Stop doing it ...

There are many more risks about your hands and "DANGEROUS EXPOSURES" rather than some radiation dose which helps you to avaoid hand surgery which has an overall risk of complications and side effects of 15% OVERALL!

LIFE IS SURELY RISKY and RADIATION is only a izzy bizzy PART of it

Believe in the benefits and argue with the Prof. Seegenschmiedt if you are going to meet him !

Edited 02/03/12 21:54

Re: Radiation Therapy advice needed

cindy850 — Fri, 03 Feb 2012 21:51:10 +0100

I also have to agree with Lori and Flojo. I got my diagnoses and started calling around to all the oncology radiology doctors in my area. Had a small list that i called and 20 minutes later found my doctor. He was 20 minutes from my house. I feel very lucky to have found him. So had DD about 6 months before i seen doctor and a week later i was on my way for treatment and 10 days later i was done. Smartest thing i ever done and would do it again. It has been 23 months since treatments and its still in remission. Very happy. Where are you located? Hope this helps.

Re: Vitamin B-12 deficiency

txmike — Fri, 03 Feb 2012 20:56:58 +0100

Hello!
I asked Prof. S last week if I should be taking any vitimans to help with the DD and he said no.
Michael

Edited 02/03/12 20:57

Re: Vitamin B-12 deficiency

flojo — Fri, 03 Feb 2012 20:30:07 +0100

Thanks, Newman. Good info.

Re: Vitamin B-12 deficiency

newman — Fri, 03 Feb 2012 19:23:22 +0100

Hi
I had a simple breath test,which identifies if an active bug is present or not. I have an injection of B12 approx each 6 to 8 weeks, for the past 10 yrs. Stats show about 50% of people over 65 yr of age are B 12 deficient. So even the meat eaters find that the B12 does not enter the body. I don't believe it has anything to do with Dupuytrens.

Re: Radiation Therapy advice needed

newman — Fri, 03 Feb 2012 17:13:54 +0100

Hi Jessie,
Does Dupuytrens run in the family.Prof.Seegenschmiedt mentions in his book to adopt ' wait and see in the first instant.'I am not sure at your age if Radiotherapy is the way to go . I am no doctor but in my case Dupuytrens started when I was 35yr and no surgery until I was 50.Yr. I had RT in 2007 .Sometimes the disease remains dormant for years. You have to feel comfortable with your decision.

Edited 02/03/12 18:44

Re: Radiation Therapy advice needed

Anthony — Fri, 03 Feb 2012 11:40:48 +0100

Hi Jessie
It is soooo difficult to make an informed decision on whether RT will have a long term effect relating to cancer (particularly in relation to treatment on younger patients). There just doesn't seem to be a huge range of research available that looks at the long term affects. Dr S in Hamburg doesn't seem to have had many (or any) problems but I think his follow ups only go back 13 years, so there is nothing conclusive long term.

I have read that it increases your chances of getting cancer only marginally (almost not measurable), yet the two surgeons I spoke too STRONGLY recommended not to get RT because of its mutating affect on cells - and therefore the possibility of cancer-, as well as possible complications with further surgery (although neither had experience on hands after RT one said operating on upper limb and necks after RT had proven more difficult for him).
Other forum members have said that surgeons in Europe (where RT is used much more extensively on DD) do not report significant problems with 'salvage surgery'.
Some forum member also mentioned that if cancer did appear it would have to be restricted to the hand area. Without any medical experience I would like to believe that, but I can't help thinking that if cells were mutated and possibly cancerous (or pre-cancerous), and then that area had surgery performed on it then wouldn't it be logical to assume that those affected cells would migrate to other parts of the body or lymph system through the blood.
These are only thoughts that I am currently struggling with and probably have no medical credence.
Ironically I am booked in to see Dr S in Hamburg in two weeks for RT but I cannot make myself pay for the flights as my mind constantly switches from go to don't go.(it seems every 10 minutes)
With youth on your side you would think there will be a number of significant developments to help you control this disease so you have good reason to be optimistic. As you are doing, stay informed and don't let one opinion (either medical or friend) control your decisions.

One thing is for sure. You will find valuable information and support through this website and forum. There are many experienced and knowledgeable patients worth communicating with.( and a few like me that probably just add to the confusion)
All the best
AB

Re: Radiation Therapy advice needed

artset — Fri, 03 Feb 2012 02:12:55 +0100

I live in central FL. I have this affliction in my left hand and both feet. We are lucky to have an excellent hand specialist locally, Dr Carlos Woodward of Melbourne, FL. I had a consult with him. He was not interested in any surgical options for my hand because of the early stage of the disease. He did say that I appeared to have a relatively aggressive form of the disease because I have a growth on the web of my hand in addition to the classic ring and pinkie finger.

He was aware of radiation as an early treatment when I mentioned it and referred me to Dr Nanialei Golden of MIMA in Melbourne, FL. I am quite impressed so far. Although she does not typically treat Dupuytrens, she was knowledgeable and has a treatment plan for my hand. It will commence on Feb 13. She did not think I should pursue treatment on my feet. Her thought was that my feet were not functionally affected.

One of the nurses thought Dr. Golden would be pleased to treat me. I think that it must be refreshing to have a patient who is not facing a life threatening cancer. I mention this because you might find someone in your locale that would have a similar attitude. Her staff is pursuing the insurance compensation for me.

I am a textbook example of the disease. 58 years old, classic symptoms and progression. You, though, are quite young relative to the norm. You may encounter some resistance because of the fear of radiation exposure related cancers that can take 20 years to appear. When I was 27, I did not think about being 47, so a doctor's hesitation might seem overblown to you. Radiation therapy is very conservatively applied in the USA compared to Europe. It could be so because of the constant fear of lawsuits. I hope it works out for you.

I will update as is appropriate. Thanks to you all for sharing. I would not have known how to pursue a treatment without your help.

Edited 02/03/12 02:29

Re: Has Verapamil helped your DD?

GaryBall — Fri, 03 Feb 2012 01:28:39 +0100

Hi snickers,

I m thinking of having a go with verapamil......what is the latest newsyour end???

Many thanks

Gazza

Joe - I am taking Verapamil in pill form. I didn't take very high dose before and won't be able to take a high dosage this time either.

Flojo - I was looking around the Dupuytren Foundation website (which also has a link to this forum) and came across a tiny article in the Treatments section. Here is a link to the area http://www.dupuytrenfoundation.org/Helpful-Medications.

I went down to the Calcium Channel Blockers and clicked on one of the links (they're both the same) next to it. I didn't understand everything I read, but it put my taking Verapamil into the timeframe where my DD showed improvement. Here is a section of that article that intrigued me:

"In the second part of the study, prostaglandins E1 and E2 or the calcium blockers nifedipine and verapamil were tested for their ability to inhibit LPA-promoted contraction. It was found that both types of inhibitors partially block LPA-promoted contraction of Dupuytren's fibroblasts."

I am hoping to find at least the same improvement I had before so I can more definitely say it was the Verapamil that helped. I will let you know how works for me, but it will take a some time. Thank you!

Vitamin B-12 deficiency

flojo — Fri, 03 Feb 2012 00:43:43 +0100

I just read this on www.holisticwithhumor.com -

Quote:
Memory loss, sluggishness, numbness in hands and feet, optic issues, and autoimmune disorders are all possible symptoms associated with low B12.

Is Dupuytren's thought to maybe be an autoimmune disorder? I've been hearing a lot lately about Vitamin D and Vitamin B-12 deficiency and I was just wondering about Vitamin B-12 and Dupuytren's. Any thoughts?

Re: Any Advice Appreciated

flojo — Thu, 02 Feb 2012 23:45:18 +0100

Read my post under "Radiation Therapy advice needed" that I just sent. I had 2 alternative treatments, NA and RT, for early Dupuytren's and briefly tell about it in my post.

I agree with the others who say research all you can. You can come back with specific questions. People will help but ultimately you have to decide what is best for you.