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Failed NA procedure, now considering amputation
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04/24/17 21:44
patrick 
04/24/17 21:44
patrick 
Failed NA procedure, now considering amputation

I was diagnosed with Dupuytren's about 3 years ago. It only afflicts my little finger on the left hand. The first orthopedic surgeon I visited (about 8 monthts after noticing the bend) suggested trying Xiaflex. At the time, it was not a financially viable option for me. So, I put it off in the the hope that I could save the money and try it later. Another year passed before I saw another doctor and the contracture worsened from 50 degrees to well past 90 degrees. This time the doctor suggested full blown surgery. This was pretty disheartening considering I now had enough money saved to proceed with the Xiaflex, but the doctor didn't "believe" it would help and the surgery would cost me 5 times as much. So, I did a bit of research and found out about the NA procedure. I located a doctor in Chicago that could perform it.

I had the procedure done Saturday. The doctor was able to release the cords, but my finger would not straighten without a lot of pressure which was extremely painful. Keeping it straightened is unbearable. So while technically the procedure was a success in breaking the cord, my bent finger remains without any significant improvement. Money well spent!

It seems my options are now limited. The cord is broken, but the finger won't straighten, so I imagine the joint/bone has deformed such that straightening will require surgery. I really just want to be done with whole ordeal. Amputation sounds terrifying, but I'd rather have one less finger the deal with it any longer.

Thanks for listening.

04/24/17 23:22
spanishbuddha 

Administrator

04/24/17 23:22
spanishbuddha 

Administrator

Re: Failed NA procedure, now considering amputation

patrick:
I was diagnosed with Dupuytren's about 3 years ago. It only afflicts my little finger on the left hand. The first orthopedic surgeon I visited (about 8 monthts after noticing the bend) suggested trying Xiaflex. At the time, it was not a financially viable option for me. So, I put it off in the the hope that I could save the money and try it later. Another year passed before I saw another doctor and the contracture worsened from 50 degrees to well past 90 degrees. This time the doctor suggested full blown surgery. This was pretty disheartening considering I now had enough money saved to proceed with the Xiaflex, but the doctor didn't "believe" it would help and the surgery would cost me 5 times as much. So, I did a bit of research and found out about the NA procedure. I located a doctor in Chicago that could perform it.

I had the procedure done Saturday. The doctor was able to release the cords, but my finger would not straighten without a lot of pressure which was extremely painful. Keeping it straightened is unbearable. So while technically the procedure was a success in breaking the cord, my bent finger remains without any significant improvement. Money well spent!

It seems my options are now limited. The cord is broken, but the finger won't straighten, so I imagine the joint/bone has deformed such that straightening will require surgery. I really just want to be done with whole ordeal. Amputation sounds terrifying, but I'd rather have one less finger the deal with it any longer.

Thanks for listening.
Hi Patrick

Sorry to hear your news. I do think a second opinion from another doctor skilled in NA and/or Xiaflex who has done lots, may be worth investigating. You also need to get a physicians diagnosis on why the finger won't straighten, and not just your best guess thoughts. Indeed there can be irreversible joint changes with a long term severe contracture, but it's not clear from your description that's the case and that is what is causing the problem, and a doctor should be the one to decide. Some physio, strengthening and tendon glide exercises may be what's needed.

An amputation, whilst sounding easy, is not always such an easy option for everyone. I speak as one with a ray pinkie amputation. It's quite major hand surgery, with the risk of invoking a flare reaction of more DD on the hand. There is also the risk of infection, nerve damage, CRPS, phantom limb pain or feelings, and permanent loss of grip strength. In other words the risk of replacing one problem with another, although in the long term most people recover from the amputation but not necessarily the DD. So, I would advise pause and look further into your options before taking that path.

Best wishes SB

04/25/17 23:50
BRIANB 
04/25/17 23:50
BRIANB 
Re: Failed NA procedure, now considering amputation

I agree...search out another Doctor..EX Pess..Denkler ..etc....perhaps photos along with your med report,you could find an easy resolve. Maybe there is one lingering cord,that did not get broken,who knows..Don't give up !

04/29/17 01:04
Skydiver 
04/29/17 01:04
Skydiver 
Re: Failed NA procedure, now considering amputation

Two (three?) years ago I had surgery on my left hand. My little finger had slowly bent until it was at 90 degrees. I'd always assumed it was arthritis (I was 53), and my doctor didn't know much at all about it. I think I'd had a doctor tell me years earlier that I had Dupuytrens (at the time I had only lumps in my hand, no contracture). But by the time I saw a specialist and was told it was Dupuytrens that was causing the bending, my little finger had progressed to the point to where Xiaflex would not be able to help and only surgery would fix it. So I had surgery. It was a months-long recovery and I was slow to heal. Several months of physical therapy. Today, my little finger is only a little bent. Not bent like it used to be and I couldn't put my hand in my pocket or easily put on gloves. If I'd not waited so long to find out why my finger had bent I could have used Xiaflex. In fact, weeks after my surgery on my left hand I had Xiaflex injections in my right hand (slight bending of the little and ring fingers, couldn't lay my palm flat on a table). Next day the surgeon deadened my hand and just snapped all those cords. Sounded like firecrackers going off, but no feeling whatsoever.
So for someone thinking about just lopping off the offending appendage, something I'd considered at one point, if you can swing it financially then I recommend surgery.

06/19/17 06:31
worsley 
06/19/17 06:31
worsley 
Re: Failed NA procedure, now considering amputation

I am new so hope you dont mind dumb question.Are you saying xilaflex weakened the cords enough for the doctor to break them?

06/19/17 07:00
Stefan_K. 
06/19/17 07:00
Stefan_K. 

Re: Failed NA procedure, now considering amputation

worsley:
I am new so hope you dont mind dumb question.Are you saying xilaflex weakened the cords enough for the doctor to break them?
Hi Worsley. That's indeed the way collagenase/Xiaflex(R) works. http://www.dupuytren-online.info/dupuytren_collagenase.html
Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]

07/25/17 02:29
Josie 
07/25/17 02:29
Josie 
Re: Failed NA procedure, now considering amputation

Patrick, so sorry to hear about your finger. However, it sounds as if you had full release of your dupytrens and your finger joint is now the problem. These are two very seperate issues. It's unfortunate that you were unable to have the NA done sooner because it may have saved the joint.

If your dupytrens was completely released (it sounds like it was as it is capable of being straightened), your next step may be to look into some sort of physical therapy before possible joint reconstruction or amputation. As someone whom also is afflicted with dupytrens and a huge proponent of NA, consider yourself lucky that you found this problem with your joint through NA. Otherwise, you would have had the same result but with a lot more suffering and a much emptier pocket book. I wish you well!

07/26/17 20:57
bstenman 
07/26/17 20:57
bstenman 
Re: Failed NA procedure, now considering amputation

Unfortunately the majority of practitioners have only experience with one type of treatment and this greatly reduces the odds for success. Xiaflex and NA work differently and are best used together. The Xiaflex dissolves the tissue that is involved with the impingement and once this tissue is dissolved it it important to not simply do a manual manipulation of the fingers and hand but to also do NA to get full release of the underlying tissue.

Find someone who has experience with BOTH Xiaflex and NA and is a certified hand surgeon and not someone who practices sports medicine or whatever and that is all they do. Best to do the Xiaflex on the first day and it loses its effectiveness in dissolving tissue after 12 hours so on the second day the doctor can do the release with the NA.

Xiaflex is better where there are nerves that might be damaged by NA and NA helps to correct impingement with direct separation of the facia where it is bound. As the physician should be using a local anesthetic before doing the manipulation your hand is already numb and so it is easy to add NA technique to do a much better job than doing just Xiaflex injections or doing just NA.

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