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My xiaflex experience
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07/05/2010 02:23
flojo 
07/05/2010 02:23
flojo 
Re: My xiaflex experience

Dave T, Your approach and tactics for your appeal to your insurance company was helpful for all of us to know no matter why we may have to pursue an insurance company for denied coverage. I hope I never need it but I'm filing your course of action for reference, just in case.
Well done!

07/07/2010 08:06
Dave O in Cornwall

not registered

07/07/2010 08:06
Dave O in Cornwall

not registered

Re: My xiaflex experience

Hi,
Thanks for your info, I have also had 2 ops on my right hand, little finger, one in 2000 and the second in 2008, this finger is now bent back at approx 45 degs and always painful, very restrictive, not good. The left hand little was done in 2003 and is still quite straight, not too bad.
With regards to the right hand it needs doing pretty soon, if not now, where can I get the Xiaflex jabs done, don't mind travelling and paying for the treatment.

Regards
Dave O.

07/07/2010 10:34
dave t

not registered

07/07/2010 10:34
dave t

not registered

Re: My xiaflex experience

You can find xiaflex providers by going to the Auxilium website. There is a search function to find trained clinicians.

Having said that, you might want to narrow your search to docs who participated in the clinical trials of xiaflex, as they will have much greater experience with the procedure and results. You can find the names of docs who participated in the trials by doing a google seaqrch for "auxilium clinical trials" and then reading the reports. Once you find the name of a doc, call the doc's office and ask if the doc is currently administering xiaflex. See if you can discuss the proceiudre/results with a nurse or physician assistant. Then you can make the appointment.

Good luck! It's been a good procedure for me (I have another injection in three weeks).

07/07/2010 20:19
Dave O in Cornwall

not registered

07/07/2010 20:19
Dave O in Cornwall

not registered

Re: My xiaflex experience

Thanks for your reply. I will your info and follow it up, will also let you how I get on.

Dave O

07/08/2010 12:20
Dave O in Cornwall

not registered

07/08/2010 12:20
Dave O in Cornwall

not registered

Re: My xiaflex experience

Hi Dave t,

Where did you have your treatment carried out, are in the UK, I'm not having much joy finding anywhere in the UK that will do the Xaiflex treatment.

Dave O

07/08/2010 12:56
dave t

not registered

07/08/2010 12:56
dave t

not registered

Re: My xiaflex experience

I was treated in the US, near Boston.

Go to the Xiaflex website (www.xiaflex.com) and enter a postal code (try 02150) and then you get a list of physicians administering xiaflex. Contact doctors' offices and choose one for treatment.

Not sure, but xiaflex may not yet be available in the UK. Perhaps someone else on the forum knows more.

07/08/2010 13:06
wach 

Administrator

07/08/2010 13:06
wach 

Administrator

Re: My xiaflex experience

below web site iss for US residents only. Xiaflex has not yet been approved in Europe, only in the USA.

Wolfgang

@dave t:
I was treated in the US, near Boston.

Go to the Xiaflex website (www.xiaflex.com) and enter a postal code (try 02150) and then you get a list of physicians administering xiaflex. Contact doctors' offices and choose one for treatment.

Not sure, but xiaflex may not yet be available in the UK. Perhaps someone else on the forum knows more.

07/12/2010 19:49
moondanc 
07/12/2010 19:49
moondanc 
Re: My xiaflex experience

@dave t:
I had xiaflex treatment two days ago... [snip] Then I was told to go about normal activity and retun 24 hours later for hand manipulation.
Dave T


Interesting-- in the trials we were told to keep the injected hand as motionless as possible in order to "keep" the Xiaflex in the cord and to "prevent" the collagenase from mograting to the upper arm or further. Please keep us posted on how long your fingers stay straight and your progress.

Moondanc

07/22/2010 16:56
bstenman 
07/22/2010 16:56
bstenman 
Re: My xiaflex experience

I would expect that motion and the use of DMSO would be helpful in assisting with the removal of dead cellular matter that has been dissolved by the collagenase enzyme. After intense exercise it has been proven that massage therapy helps the muscles remove waste products and recover much faster. This should apply to a procedure where connective fascia tissue is being dissolved.

I take exception with the statement about the pain involved with a NA procedure. I had the procedure performed in both my hands by Dr. Denkler in Larkspur, CA and he used a local anesthetic and other than the injections of the anesthetics I felt nothing during the actual NA procedure or afterwords. But for the bandages on my hands I could have driven myself back home.

07/22/2010 19:56
Guest

not registered

07/22/2010 19:56
Guest

not registered

Re: My xiaflex experience

bstenman:

I take exception with the statement about the pain involved with a NA procedure. I had the procedure performed in both my hands by Dr. Denkler in Larkspur, CA and he used a local anesthetic and other than the injections of the anesthetics I felt nothing during the actual NA procedure or afterwords. But for the bandages on my hands I could have driven myself back home.

Different physicians--for different reasons and philosophies--use different procedures for NA. Dr. Eaton does not use a local for the entire hand believing (I hope I'm representing him properly) that it is much safer to numb each local area in order that the patient be able to feel any "tingling" which might indicate danger in being too close to nerves. He constantly checks with the patient for these symptoms. Therefore, there are multi injections of anesthetic as he works on the hand and progresses and therefore more opportunity for pain.

Dr. Denkler (I hope I'm representing him properly) uses a local anesthetic which numbs the entire hand and then goes to work on it so there is much less chance for pain.

Finally, depending on the degree of anesthetic used, the pain when "breaking" the cord can vary considerably. I've had NA procedures with both Dr. Eaton and Dr. Denkler and the above reflects my experience.

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