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Xiapex
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02/12/16 08:12
flyfisher66 
02/12/16 08:12
flyfisher66 

Xiapex

Hi all , just over two years ago I had an fasciectomy on my left hand , the result of which left me with extensive scar tissue ( ring finger , middle finger , index finger and the span between the thumb and index finger . I now have just 1 nodule in the palm of my left hand and slight numbness on one side of my index finger . At the time of this operation I thought " I am not going to have that done again " .

However , I also have the same condition in my right hand , mainly in the palm . Two years ago the consultant suggested a fasciectomy with a skin graft when the left hand had recovered . Eventually it was decided to monitor the condition with regular hospital visits .

Now the decision is to perform the xiapex treatment on my right hand , injection on the 29th February , manipulation on the 2nd March . I have read as much literature as I can on this treatment , and I am most concerned about the possible side effects , I personally do not like the idea of injecting what appears a toxic enzyme into my body . There have been positive outcomes and some "horror stories" regarding this procedure , at the last consultation with the specialist his answer was " you do not really have much of a choice" !!

I am a 60 year old male , with outdoor hobbies , fly-fishing , beach fishing and gardening ( I also tie my own flies , which requires good dexterity ) , and working out at the gym about 5 times a week .

I need to remain positive , so if anyone out there has any comments , then please post .

I have two children and three grandchildren , I hope I have not passed this awful condition to them ! My younger brother has got it as did my paternal grandmother !

Thanks

02/12/16 08:43
spanishbuddha 

Administrator

02/12/16 08:43
spanishbuddha 

Administrator

Re: Xiapex

Hi flyfisher

I don't have personal experience of Xiaflex, but you are right we do hear some horror stories, but also many success stories, probably more in fact. I think the lesson to learn is pick a doctor who has not just done the training, but now has a few years experience of using Xiaflex in 100's of cases. Good luck for a positive outcome.

Is NA ruled out?

Regards SB

02/12/16 08:49
flyfisher66 
02/12/16 08:49
flyfisher66 

Re: Xiapex

Hi SB ,

I had NA on my left hand prior to the operation , but it was not successful . Xiapex was mentioned prior to my operation on the left hand , but at the time I believe the NHS did not fund the use of this treatment . There was no mention of NA this time on my right hand !

02/12/16 09:49
Stefan_K. 
02/12/16 09:49
Stefan_K. 

Re: Xiapex

Flyfisher, if by "same condition" you mean mainly nodules in the palm and perhaps some retracted cords, NA/PNF should definitely be an option, and you may want to look into radiotherapy. I would run from anyone telling me I don't have options, unless I am missing information about your condition.

On the other hand, if you already have the Xiapex procedure scheduled and it doesn't cost you a fortune, the risks seem manageable and (unlike open surgery) limited to discomfort and pain. So if your doctor has the necessary experience, why not.

02/12/16 14:58
flyfisher66 
02/12/16 14:58
flyfisher66 

Re: Xiapex

Hi Stefan ,

I am in the UK , on National Health Service hence no cost . My right hand is more cords than nodules , and my consultant is a well respected hand/plastics surgeon . One thing I have learned from this site before any procedure is started is to ask " how experienced is the surgeon about to perform the operation " as it is not always the "top man" who operates !!

Like a lot of other sufferers of this disease I have watched on various mediums this procedure being done , most seem to have a positive result , with minimum discomfort . After the problems I had with my left hand ( 3 hour operation) , finger swelling , thick scar tissue , some numbness , but no pain , I am hoping that the Xiapex treatment will be better with a quicker recovery time .

I would like to be able to fish the start of the season or soon after , ( early April )

Thanks

02/12/16 16:23
econn 
02/12/16 16:23
econn 
Re: Xiapex

I had Xiaflex administered on my left hand by a US plastic surgeon in July 2014 and the results were amazing. Years ago, a hand specialist had recommended surgery but was employed at the time and really couldn't spend the long rehab. I'm glad I waited until I found a doctor who had experience with Xiaflex. I have full use of my left hand and the procedure was pretty routine, some pain involved in the injections but it was worth it. I have nodules growing in my right hand and if they develop into DC I will gladly have the same procedure done on that hand.

02/12/16 16:31
spanishbuddha 

Administrator

02/12/16 16:31
spanishbuddha 

Administrator

Re: Xiapex

NICE are behind schedule on their final update for guidance on Xiapex on the NHS. In the meantime it's available, but the door could shut anytime (and become private only); or remain open permanently. So discuss timing with your doctor.

02/23/16 17:29
bstenman 
02/23/16 17:29
bstenman 
Re: Xiapex

I have had the Xiaflex injections done twice and the first time it was done by a very experienced hand surgeon, Dr. Denkler using the then recommended guidelines from the manufacturer of the product. The Xiaflex was injected and then a week later the hand was manipulated and a partial NA performed on those areas where the Xiaflex was not enough. As the doctor has done more than a thousand NA procedures his skill was not in question.

The second time, two years later, when I again needed treatment for severe contracture I spoke with Dr. Denkler about changing the procedure and he agreed to the changes. The Xiaflex takes 12 hours to work and then stops dissolving more of the Dupuytren's tissue. So I had the doctor do the injections at 10 am the first day and the following day he worked my hand and performed a NA on the hand where the Xiaflex had not been enough.

With a doctor who has experience with NA and Xiaflex the two procedures can be done on those parts of the hand where it safest. The Xiaflex is safer around nerve bundles and the NA can be used for other parts of the hand.

The problem with the company that sells Xiaflex is that they will allow doctors with no experience with hand surgery to use its product after a short introduction. In my area the doctor practices sports medicine and I was not going to have him do the procedure. I traveled to Dr. Denkler's office to get the best practices and best results.

Two years later my left hand is still in great shape and it was the use of Xiaflex and NA by a skilled and highly experience hand surgeon that made all the difference in the world.

02/23/16 17:44
mikes 
02/23/16 17:44
mikes 
Re: Xiapex

Dr. Denkler is magic.

02/24/16 10:08
flyfisher66 
02/24/16 10:08
flyfisher66 

Re: Xiapex

Hi all , I go in on Monday 29th , late afternoon for the injection then early Wednesday 2nd for the manipulation . I am more than a bit concerned , especially all the problems I had after the operation on my left hand as I still have a lot of scar tissue , and one large nodule returning . I always said "I am not going through that again with my right hand" . However , my consultant basically told me that I have little choice with my right hand as " doing nothing is not an option " . At the time of the operation on my left hand Xiapex was not a treatment as it was not funded by the NHS . Trying to remain positive is difficult !!

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