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Should I get a 2nd opinion?
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06/06/2012 08:09
TonyA 
06/06/2012 08:09
TonyA 
Should I get a 2nd opinion?

Hi, a newbie here. I am 31 and have nodules, cords, and depressions in my right hand. The first nodule appeared about 7 years ago. I can't hyperextend 3 fingers, but can just about get my hand flat on the table.

I have recently been refered by my GP to see a othopedic surgeon to take a look at my dupytrens. As seems to be the a common response, he basically said to do nothing till it gets worse.

I asked him about Xiapex and he told me about what it does etc. but has yet to use it on any patient. I'm wondering if I should try to get referred to see another doc that has more experience with this, or if I should trust the docs advice that waiting is the best option. There seems to be so many conflicting view on this, It is hard to know which ones to believe, and what is the best treatment.

I really don't want surgury, so want to do whatever I can to slow the progression. Any advice?

Many thanks in advance.

06/06/2012 12:40
Gary1987 
06/06/2012 12:40
Gary1987 
Re: Should I get a 2nd opinion?

Hi,

I am far from an expert on Dupuytren's but from what I have read on here and know from my research into Ledderhose I would say that (please people correct me if I am wrong)

1) Surgery is used to release contracted fingers so this isn't done until your fingers are bent to a certain degree (which is doesn't sound like you have if you can get your hands flat on a table).

2) Xiaflex is mainly used on cords to help with the release of the fingers as it weakens the cords. It is available in some parts of the UK on the NHS but this varies from region to region but again I think they need to see a certain level of contracture before they will consider this. (The British Duputren's Society might be able to help you more with that if you are from the UK).

3) Radiotherapy is often used, to good effect, to slow the disease progression and help alleviate problems. There are many options for this, a lot of people recommend going to Germany to get it done or you can to find someone wherever you are. If you are in the UK and want more info on this then please contact me and I can tell you about my experience with radiotherapy here and I am sure others here from various countries will offer to do the same. The reason many people go to Germany is that it can work out cheaper and Prof S has a lot of experience treating these diseases. Certainly to the best of my knowledge is just about the best way of slowing the disease.

Hope that is all correct and that some of it helps. As for if you should get a second opinion, not having Dupuytren's I wouldn't like to say but is there any harm in getting one?

Thanks

Gary

06/06/2012 13:03
wach 

Administrator

06/06/2012 13:03
wach 

Administrator

Re: Should I get a 2nd opinion?

Hi Gary,

your post gives a very good overview of options. Just wanted to add that collagenase injection (Xiapex) and needle fasciotomy (PNF; NA) are typically only done with a contracture of at least 20 degree.

Wolfgang

06/08/2012 07:58
TonyA 
06/08/2012 07:58
TonyA 
Re: Should I get a 2nd opinion?

Thanks for your comments. I guess I thought I could get Xiapex to reduce the nodules before fingers start to contract further.

The only reason why I wouldn't get a 2nd opinion is it would cost me another £200 or so due to my rubbish insurance. Which I dont really want to pay if I'm only going to get the same advice.

Radiation theopy seems the best option, but this isn't covered by my insurance. Will probably research the costs and see if it is affordable/appropriate.

Thanks again.

06/08/2012 20:06
bstenman 
06/08/2012 20:06
bstenman 
Re: Should I get a 2nd opinion?

Based on my research and personal experience I recommend getting X-ray treatment as soon as possible. If you live in Europe it is a quick hop to Essen to have the XRT done by the people with the most experience and the rates for non-citizens are much cheaper than the costs with medical insurance in the USA. And lots of sightseeing opportunities around Essen while have the treatments done as they take up only one hour of the day.

NA and Xiaflex are options for releasing contractures and reducing the size of nodules. I would expect better results on nodules with the Xiaflex and it actually dissolves the tissue. NA is 1/3 to 1/4 the cost of Xiaflex and multiple areas can be treated. In the USA the insurance companies pay for the first Xiaflex vial but if more are needed the patient pays at a cost of $4000 per vial plus the office visits with the hand surgeon. Insurance in the USA only covers contractures and not general problems like nodule if they do not restrict the opening of the fingers at the joints.

06/09/2012 16:44
Larry 
06/09/2012 16:44
Larry 
2nd opinion in Essen ? Better go to Hamburg !

bstenman:
Based on my research and personal experience I recommend getting X-ray treatment as soon as possible. If you live in Europe it is a quick hop to Essen to have the XRT done by the people with the most experience and the rates for non-citizens are much cheaper than the costs with medical insurance in the USA. ....

If you write ESSEN do you mean Prof. Seegenschmiedt in Hamburg or his former clinic there ?? He is not there anymore and has moved to HAMBURG ...

Many people here on the forum including myselfs nowadays go to HAMBURG to counsel Prof. S. there, as in his former clinic none of the doctors seems to be interested or is really well experienced to do the job ... I had personally this bad first follow-up experience with the former clinic. They really don't know WHAT and HOW to follow the formerly treated patients of Prof. Seegenschmiedt. Sorry to say this ....

Hamburg is quite scenic as well ! Enjoyed it at least one time ! Larry

Edited 06/09/12 20:39

06/09/2012 16:45
Larry 
06/09/2012 16:45
Larry 
Re: Should I get a 2nd opinion?

bstenman:
... NA and Xiaflex are options for releasing contractures and reducing the size of nodules. I would expect better results on nodules with the Xiaflex and it actually dissolves the tissue. NA is 1/3 to 1/4 the cost of Xiaflex and multiple areas can be treated. In the USA the insurance companies pay for the first Xiaflex vial but if more are needed the patient pays at a nly cost of $4000 per vial plus the office visits with the hand surgeon. Insurance in the USA only covers contractures and not general problems like nodule if they do not restrict the opening of the fingers at the joints.

In Germany you only pay about 1000 Euro per vial and the injection is also much cheaper than in the USA ... !

Larry

Edited 06/09/12 20:41

06/11/2012 13:16
pia2some 
06/11/2012 13:16
pia2some 
Re: Should I get a 2nd opinion?

I don't have much knowledge about the radiation therapy because it's not available anywhere close to where I live. I just had Xiaflex treatment in April.

My insurance paid 100% of the cost of the medication, which was $3465 for one vial (which is one injection). My insurance will pay for several more injections this year if I decide to do more. So it's not necessarily true that insurance only pays for one injection.

Most treatments, with the exception of radiation, do require you to have some degree of contracture in the fingers. At the same time, the effectiveness of the treatment can be dependent on the degree of contracture! With Xiaflex, my doctor said that the best results are achieved when the contracture is between 20 and 40 degrees. More than 40 degrees and it can take more injections and you may not see full release in the fingers. It just seemed there was a window of time when the treatment would be the most successful. That was one reason I went ahead and had the Xiaflex injection last spring.

~dawn

07/02/2012 20:32
bstenman 
07/02/2012 20:32
bstenman 
Re: Should I get a 2nd opinion?

The website for the company that produces Xiaflex lists the doctors that it has approved for injecting it. Most of these however have very little hands on experience with Dupuytren's and I would not both with someone who has not treated dozens of patients. I purposely drove 120 miles to see Dr. Denkler who has done hundreds of NA procedures and Xiaflex treatments to get his advice as to which to do for my hands and I followed his recommendations.

General practitioners have their place but they are woefully ignorant of Dupuytren's and are no more in a position to give advice then your dental hygienist. This website is an excellent source and you can also check with hand surgeons in your area to find someone who does both NA and Xiaflex and has a track record with both.

NA is cheaper, has a shorter recovery time, and should be considered along with Xiaflex as a treatment. If you have more than one finger to treat then NA is better as the insurance companies will cover the entire process on multiple digits and multiple hands as I had done. With Xiaflex the insurance companies will only cover the $3500 cost for the first vial and it will only be enough to treat one section of one hand.

07/03/2012 01:08
pia2some 
07/03/2012 01:08
pia2some 
Re: Should I get a 2nd opinion?

Quote:
With Xiaflex the insurance companies will only cover the $3500 cost for the first vial and it will only be enough to treat one section of one hand.


This is not true. My insurance company pays each time I need Xiaflex. I have approval already for 2 more injections. I had one in April. My insurance is Cigna and they have told me that coverage of Xiaflex is the same as the rest of my medical coverage. There are no limits or special rules pertaining to treatment with Xiaflex. Now other insurances may be different. I can only speak to our coverage with Cigna.

~ dawn

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