| Lost password
486 users onlineYou are not loggend in.  Login
Xiaflex injection in the UK????
 1 2
 1 2
05/14/2010 21:13
NEWOSA65

not registered

05/14/2010 21:13
NEWOSA65

not registered

Xiaflex injection in the UK????

Hi everyone,

I am currently lined up to have surgery on my right hand next month - in fact the second lot of surgery to help improve the contracture again in my little finger and now in my middle finger. The little finger will need some skin grafting to help with second lot of surgery. I only had the first lot of surgery done 18 months ago and my little finger is right over again, almost at 90 degrees to my palm! This problem is the pits!

I have since discovered that there is now an injection available called the Xiaflex injection which is supposed to be very effective for dupuytrens disease. Problem is that i am not sure whether it is on offer here in the UK so i am hoping that maybe someone can advise me as i urgently require some treatment but hoping that the invasive traditional surgery can be avoided?

Please, any advice will be welcomed as i cannot face this surgery again as last time i was in bandages for over 5 weeks and got an infection, just to discover that 18 months later it has all returned and has been a complete waste of time.

Incidently i was told that the 'needles method' was not appropiate for me due to the fact that my palms were affected AND my fingers thus fingers being pulled towards palm at two angles! I am 45years of age and have been told that i have it particularly bad - just hope that it doesn't spread to my feet................and to other place that was suggested! lol!

Cheers everyone for all your time and help and look forward to any advice that you may be able to offer?

Kind reagrds,

Simon (UK)

05/15/2010 06:38
wach 

Administrator

05/15/2010 06:38
wach 

Administrator

Re: Xiaflex injection in the UK????

Hi Simon,

Xiaflex is not yet available in the UK. It will probably take until early next year beffore it is approved.

If you are afraid of surgery NA is currently the only alternative to remove contracture. Not every contracture is suitable for NA but you might ask another doctor for a second opinion. We are providing a list of those NA physicians in The UK who we are aware of http://www.dupuytren-online.info/NA_list_UK.html.

As you know recurrence is an issue with surgery and even more so with NA (the advantage of NA being that it is minimal invasive with fast recovery). To postponse recurrence it might make sense to wear a night splint for a longer period of time, maybe 6+ months.

Wolfgang

05/15/2010 17:55
jimh 
05/15/2010 17:55
jimh 
Re: Xiaflex injection in the UK????

Get your information on Needle Aponeurotomy only from doctors who actually perform the procedure. Conventional hand surgeons don't really understand NA and tend to be excessively negative about it.

05/15/2010 22:10
LubaM. 
05/15/2010 22:10
LubaM. 
Re: Xiaflex injection in the UK????

jimh:
Get your information on Needle Aponeurotomy only from doctors who actually perform the procedure. Conventional hand surgeons don't really understand NA and tend to be excessively negative about it.
Thats so true...My personal experience with surgeons was very negative with regards to NA. The first two surgeons I consulted, told me to wait until the contracture was greater before they would consider surgery. The next two surgeons were totally opposed to NA and when I mentioned radiotherapy they were horrified, the only thing they offered was surgery.

I finally wound up doing NA for my PIP pinkie finger joint, contracted at over 50 degrees. The NA was successful, but the contracture returned. My second NA on the same finger corrected the contracture, this time it was at 90 degrees. Again the NA was successful. My PIP pinkie joint is now at about 20 degrees. I plan to wear my night brace for a very long time.

05/16/2010 16:19
TrevB 
05/16/2010 16:19
TrevB 

Re: Xiaflex injection in the UK????

LubaM.:

when I mentioned radiotherapy they were horrified, the only thing they offered was surgery.


I was not keen on radiotherapy but the likelyhood of one fix potentially not being enough was certainly high in my reasoning. The experience below highlights what I was trying to avoid. I may not have had an aggressive disease but once it's got a real grip you've missed your chance

@NEWOSA65:

Hi everyone,

I am currently lined up to have surgery on my right hand next month - in fact the second lot of surgery to help improve the contracture again in my little finger and now in my middle finger. The little finger will need some skin grafting to help with second lot of surgery. I only had the first lot of surgery done 18 months ago and my little finger is right over again, almost at 90 degrees to my palm! This problem is the pits!

Please, any advice will be welcomed as i cannot face this surgery again as last time i was in bandages for over 5 weeks and got an infection, just to discover that 18 months later it has all returned and has been a complete waste of time.


Trevor

Cambidgeshire, UK.

Edited 05/16/10 19:23

05/17/2010 11:13
NEWOSA65

not registered

05/17/2010 11:13
NEWOSA65

not registered

Re: Xiaflex injection in the UK????

Hi everyone,

Thank you for all your help and support.

I too was told that my contractures were beyond the stage of NA and so went ahead with the surgery 18 months ago. I had my little finger corrected - had two contractures, one at base of little finger (ie., in palm just below little finger and other contracture in little finger between base and first joint of little finger! Both parts were operated on and i thought that the worst was behind me! However, 12 months later i began to notice a thickening again in original affected areas but still not sure whether it is dupytrons or the thickening of the scar tissue from the invasive surgery that i had done? And when i asked my surgeon he wasn't sure either!

Anyway, as i mentioned in my first post, i have that problem currently going on (little finger is now at 90 degrees to palm) and also since the operation, my middle finger has now become affected in the same parts as my little finger! And i cannot believe how quickly it is being pulled over. The hard tissue has thickened so much under the palm and middle finger, and i find in incredible how quickly this disease takes hold!

Has anyone heard of Chris Bainbridge from Derbyshire? Apparantly i have been advised to go along and see him under a private consultation which costs £125. I think however i will need to see my GP first before i go ahead - is that something that one has to do before making a private consultation? I am hoping that he will be able to help me with the contractures using the NA... if he can help i will change my current Surgeon in Norwich and have any procedures done hopefully on NHS?

I am lined up to have the invasive surgery done in September - was due next month but i decided to postpone as i want a second opinion before i make any big decisions as it takes a long time to get over the big ops and i hate the idea of having the surgery done especially if i can get over it without excessive upset and trauma!!!!

Thanks again for all your help and advice... just sorry to know that all you nice folks have this awful problem too.

Cheers,

Simon
ps., have the dupytrons in my left hand as well - my little finger is at 90 degress but luckily the contracture is not in palm as yet... just in little finger, bad enough though!!

05/17/2010 15:56
TrevB 
05/17/2010 15:56
TrevB 

Re: Xiaflex injection in the UK????

@NEWOSA65:

Has anyone heard of Chris Bainbridge from Derbyshire? Apparantly i have been advised to go along and see him under a private consultation which costs £125. I think however i will need to see my GP first before i go ahead - is that something that one has to do before making a private consultation? I am hoping that he will be able to help me with the contractures using the NA... if he can help i will change my current Surgeon in Norwich and have any procedures done hopefully on NHS?


http://www.pulvertafthandcentre.org.uk/t...p?contactid=415

You'll need to see your GP first but I'd imagine that he should be able to refer you direct. Don't pay for what you can get on the NHS. I had an appointment at a private hospital for an eye problem and the consultant told me to get refererred to him at the NHS hospital, which I did and got the same excellent treatment.

Cambidgeshire, UK.

05/18/2010 01:39
flojo 
05/18/2010 01:39
flojo 
Re: Xiaflex injection in the UK????

My cords and tightening was primarily in my palm. Tightness across the palm pulled on the pinky and thumb, but no cords actually in the pinky. NA on about 4 cords in the palm and 1 or 2 in the thumb. Release was good. Had RT about 3 months later. I'm glad I made the decisions that I did. NA and RT worked for me in lieu of surgery.

05/22/2010 16:13
craggy 
05/22/2010 16:13
craggy 
Re: Xiaflex injection in the UK????

@NEWOSA65:
Hi everyone,

Thank you for all your help and support.

I too was told that my contractures were beyond the stage of NA and so went ahead with the surgery 18 months ago. I had my little finger corrected - had two contractures, one at base of little finger (ie., in palm just below little finger and other contracture in little finger between base and first joint of little finger! Both parts were operated on and i thought that the worst was behind me! However, 12 months later i began to notice a thickening again in original affected areas but still not sure whether it is dupytrons or the thickening of the scar tissue from the invasive surgery that i had done? And when i asked my surgeon he wasn't sure either!

Anyway, as i mentioned in my first post, i have that problem currently going on (little finger is now at 90 degrees to palm) and also since the operation, my middle finger has now become affected in the same parts as my little finger! And i cannot believe how quickly it is being pulled over. The hard tissue has thickened so much under the palm and middle finger, and i find in incredible how quickly this disease takes hold!

Has anyone heard of Chris Bainbridge from Derbyshire? Apparantly i have been advised to go along and see him under a private consultation which costs £125. I think however i will need to see my GP first before i go ahead - is that something that one has to do before making a private consultation? I am hoping that he will be able to help me with the contractures using the NA... if he can help i will change my current Surgeon in Norwich and have any procedures done hopefully on NHS?

I am lined up to have the invasive surgery done in September - was due next month but i decided to postpone as i want a second opinion before i make any big decisions as it takes a long time to get over the big ops and i hate the idea of having the surgery done especially if i can get over it without excessive upset and trauma!!!!

Thanks again for all your help and advice... just sorry to know that all you nice folks have this awful problem too.

Cheers,

Simon
ps., have the dupytrons in my left hand as well - my little finger is at 90 degress but luckily the contracture is not in palm as yet... just in little finger, bad enough though!!

05/22/2010 18:34
craggy 
05/22/2010 18:34
craggy 
Re: Xiaflex injection in the UK????

Hi Simon

I've had NA with Chris B twice now. You won't go wrong with him, although it might be that at 90deg it's too late for a good result. When I started NA treatment in Paris my 90deg+ little finger was helped, but not sufficiently, and I had surgery (so far successful). On my other hand Mr B's treatment is good (for 1/2 years)

You need to be referred by your GP to The Pulvertaft Hand Clinic at the Royal Derby Hospital (all details on their website) for the attention of Mr B. (but others in the team have now learned the NA procedure) It takes some time to get an assessment appointment. Actually, if you emailed him with pictures he would be able to see whether NA stood a chance, I imagine. It's a good department at the hospital. I (almost) enjoy going!

Good luck Richard

 1 2
 1 2
invasive   degrees   contracture   Cambidgeshire   injection   pulvertafthandcentre   radiotherapy   currently   practitioners   thickening   dupuytren-online   surgery   contactid=415   successful   Aponeurotomy   private   contractures   Xiaflex   consultation   problem