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Imminent dermofasciectomy
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05/04/18 16:02
Luciferette 
05/04/18 16:02
Luciferette 
Imminent dermofasciectomy

Hi all,

As you can see from my previous posts, I had my first fasciectomy on my right hand last year. It wasn't a complete success due to the severe contracture and the aggressive nature of the disease -- a module is already forming at the joint again. At that time, I had the beginnings of a nodule in the same place on my left hand: pip joint, little finger. This has grown and progressed alarmingly quickly, with two large tender lumps and a contracture of more than 45 degrees that is fast worsening. The knuckle pads on the opposite sides of my fingers (both hands) are also worsening and very painful. My consultant offered me steroid injections for these; does anybody know if they work?

So today I saw my consultant again, and he has proposed a dermofasciectomy asap for the left hand, with the idea that if it works, we can go down the same route with my right. NA isn't an option due to the position and nature of the nodules and contracture, and a simple (!) fasciectomy -- if it's the same as my right hand -- won't work.

I admit I'm rather nervous about this surgery. It doesn't look pleasant and the recovery looks fairly arduous. Does anybody else here (young women especially!) have experience of this procedure and, if so, could you offer any advice?

Edited 05/04/18 16:03

05/04/18 17:56
spanishbuddha 

Administrator

05/04/18 17:56
spanishbuddha 

Administrator

Re: Imminent dermofasciectomy

I am not a young woman but I hope you don’t mind me suggesting at least get a second opinion.

05/04/18 20:33
Luciferette 
05/04/18 20:33
Luciferette 
Re: Imminent dermofasciectomy

spanishbuddha:
I am not a young woman but I hope you don’t mind me suggesting at least get a second opinion.

Ha, not at all :) I only mentioned the young woman thing because the surgeon called me his "unusual young lady"! There was another surgeon in at the consultation today, and he was more cagey about the benefits of dermofasciectomy (they also disagreed as to whether the recurring contracture in my right hand is scar tissue or new nodules -- my usual surgeon said scarring, the new one said dupuytrens!). But this other guy did say that there wasn't really any other option than surgery...

Obviously I'd rather not have it, but the speed it's contracting makes me quite worried. I can't afford radiotherapy and from what I've read it's a bit late for that anyway. And there are no nodules in my palm, only fingers. The bent fingers are making my work pretty difficult, so I'm not sure what to do for the best.

05/04/18 23:02
spanishbuddha 

Administrator

05/04/18 23:02
spanishbuddha 

Administrator

Re: Imminent dermofasciectomy

If it’s DD then ask why Xiaflex, or NA, is not an option?

RT is appropriate once the hands are straight and functional. So given your previous history I would be inclined, after ruling out NA or Xiaflex, and I would seek the best or most experienced for that, to have a fasciectomy, again with the best recommendation I could find, and then RT if it starts coming back. Which since you can’t afford RT puts you in a difficult position! Is this an insurance problem or health provider problem or ?

A dermofasciectomy can be a great result for difficult cases that may recur, but you need a highly experienced surgeon, who won't walk away after surgery, but provide follow up support if scarring or poor healing occurs or other side effects occur, and has connections to appropriate OT.

Where are you located?

Edit to add, having just read previous posts from you, I have to say that even if your surgeon, who did the previous op, is highly experienced and recommended, I would go elsewhere. It may not be his/her fault, but why would you risk that same experience again with them? Change at least that variable if that makes sense.

Edited 05/04/18 23:10

05/05/18 05:28
Seph 
05/05/18 05:28
Seph 

Re: Imminent dermofasciectomy

Luciferette; You say that you are being advised that NA isn't an option due to the position and nature of the nodules and contracture and this rings alarm bells for me.

I have been managing aggressive dupuytrens in both my hands for 45 years. I have had surgery once but the rest of my treatments have been NA. I have had NA done by 3 different doctors and the only time I was not happy was when it was performed by a hand surgeon. He made a fuss and he had no go areas.

The two different Paris based rheumatologists that I have seen are very skilled and I have not seen any part of the hand that they cannot work with. In recent years I have been dealing with a cord that is like a sheet and runs down the side of one finger. This is very challenging but I get improvement every time.

Last year I decided that I needed to see a surgeon as my thumb and fore finger on my left hand were being pulled together to the point where I could not wrap them around a glass. The surgeon advised me that with this type of contracture my only option was surgery. He then proceeded to talk about skin grafts etc etc. I booked in the surgery, then deferred the surgery and flew back to Paris. I saw Dr Mariepascale Manet Chopin, a tiny woman with a young family but with a lot of NA experience. 20 minutes later my finger and thumb were opened up and I was on my way.

This might sound expensive but Paris doctor appointments are precise and on time. No fuss, no prior consults and no nurse. You talk direct to the doctor and they get straight down to work. It will cost you 200 euros and these days you can get very cheap air fare deals.

If you email Dr Manet Chopin photographs of your hand she might take a couple of weeks but she will respond and tell you what she thinks. Here contact details are:

Dr Mariepascale Manet Chopin <mariepascalemanetchopin@sfr.fr>

05/05/18 14:35
Stefan_K. 
05/05/18 14:35
Stefan_K. 

Re: Imminent dermofasciectomy

I judge myself extremely lucky to live a 20 minutes metro ride from Lariboisière Hospital in Paris, the expert center for NA with numerous skilled doctors. I only had to have NA performed by a colleague of doctor Manet Chopin once over the past four years and have been able to manage my DD with a splint glove for that finger and radiotherapy for others since.

When on this website at the top right you click on "EN" you can find some information in English:

https://www.aphp.fr/offre-de-soin/consultation-29173

I imagine foreign patients probably want to talk to someone first, but it is possible to make an appointment with Dr. Manet Chopin on Friday mornings right on that website. Currently the next available appointment, selecting the first option (first appointment) is June 8th, and then it jumps to June 29th with this doctor.

This form is supposed to allow communication with Dr. Manet:

https://www.aphp.fr/formulaire/partager-...sultation-29173

Stef

[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

05/05/18 16:08
Luciferette 
05/05/18 16:08
Luciferette 
Re: Imminent dermofasciectomy

Thanks all, for your input. I've seen three different surgeons, and all have been dead against radiotherapy! So last year I looked into paying to go privately -- I'm on the East Yorkshire coast, and found a clinic in Nottingham. As you all know though, it's expensive! I don't have private med insurance and tbh haven't even been on holiday for a few years because I'm skint...Maybe as you say, SB, get the hand as right as I can and then consider a bank loan for RT :)

The three surgeons I've seen are pretty much unanimous in their opting for surgery. I suppose the question is whether to risk another fasciectomy or go straight for the skin graft. I will find out if it's last year's guy who's doing this op and go from there. I was warned that because the right hand was so bad, and had been in a state of severe contracture for several years (misdiagnosis by a GP and a rheumatologist!), it would be hard to correct. And so it proved.

This is a bugger of a disease, isn't it -- so many variables when it comes to surgeons, procedures etc, it's hard to know what to do for the best!

05/05/18 20:39
spanishbuddha 

Administrator

05/05/18 20:39
spanishbuddha 

Administrator

Re: Imminent dermofasciectomy

I think I would ask the opinion of Mr Chris Bainbridge at the Pulvertaft hand clinic a couple of hours drive away in Derby. Maybe that’s the clinic you referred to? He is one of the leading NA practitioners in the UK and helped with the introduction of Xiapex. He is well known to members of the BDS and has participated in the forum here. He has a personal website here http://www.hand-surgery.co.uk. The Pulvertaft tend to get quite busy but Mr Bainbridge has been known to correspond with potential patients via email.

05/06/18 08:36
wach 

Administrator

05/06/18 08:36
wach 

Administrator

Radiotherapy in the UK

I believe most doctors/clinics in the UK will offer radiotherapy for Dupuytren's only privately. But I think there is also a chance to get it through the NHS. You might inquire with some of the doctors listed on https://www.dupuytren-online.info/radiotherapy_clinics.html . If they are willing to treat you it would probably best to stay close to the hospital for a week. The cost of accomodation would be much, much cheaper than covering a treatment privately. Getting radiotherapy in Germany would be another option. You could consider that as a vacation if you like.

Wolfgang

Luciferette:
Thanks all, for your input. I've seen three different surgeons, and all have been dead against radiotherapy! So last year I looked into paying to go privately -- I'm on the East Yorkshire coast, and found a clinic in Nottingham. As you all know though, it's expensive! I don't have private med insurance and tbh haven't even been on holiday for a few years because I'm skint...Maybe as you say, SB, get the hand as right as I can and then consider a bank loan for RT :)

The three surgeons I've seen are pretty much unanimous in their opting for surgery. I suppose the question is whether to risk another fasciectomy or go straight for the skin graft. I will find out if it's last year's guy who's doing this op and go from there. I was warned that because the right hand was so bad, and had been in a state of severe contracture for several years (misdiagnosis by a GP and a rheumatologist!), it would be hard to correct. And so it proved.

This is a bugger of a disease, isn't it -- so many variables when it comes to surgeons, procedures etc, it's hard to know what to do for the best!

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