No, Brian, the xylaflex treatment was not fun at all. I had placed all my hope on it and my doctor kept encouraging me to wait until it was approved. In retrospect......but then again, hindsight is 20/20.

Next to xylaflex, NA is a walk in the park. Because you can't really be numbed since the doctor has to know if he hits nerve, and you're the only one who will know......the first few pokes in are somewhat uncomfortable, but nothing---and I repeat---NOTHING like the xylaflex shots, which for me were extremely painful.

As I mentioned before, my PIP joint had to be released. It was done under a nerve block and something that kept me just under (similar to what one is given for a colonoscopy.) I didn't like the feel of the block...that lasts overnight---not painful, just weird. But the pain level was easily able to be handled with just Advil. (Had a script for codeine---I chose not to take it.) Stitches were removed in 10 days, and since then I've been in PT.

I hope you aren't going to have to resort to amputation. My doctor said my finger was one of the worst he's ever seen. I'm telling you, I've had to work extremely hard, but I'm completely functional now!!! And the braces...though not the greatest of comfort, have really done the trick. My palms are flat every morning---unbelievable. I know I'll have to use them---at least part-time for a long time, but it is so worth it.

Can you NOT have more xylaflex treatments and perhaps try the NA on the other fingers?

marigail

This is the 'other' Brian that had the Xiaflex on my left pinkie last October. Update - as it turns out because I waited so long to get the finger treated both joints are somewhat damaged and I have a 20 degree Boutonieres deformity. However - I can now play the violin and piano again which is what I was looking for. The pinkie started retrograding recently - so I've started wearing a day splint (I threw my night splint) - and that has reversed the curvature.

Part of my pain level post procedure had to do with the doc really putting a lot of pressure on the finger and the joints to try to straighten the finger completely during the manipulation, which basically whacked the joints quite painfully. Then a splint on top of the joints to try to keep the finger 'straight'. I wound up in the ER because of the pain level - but it was all avoidable if the doc had known that my finger was never going to be straight for other reasons. Oh well - probably no way of knowing that prior to seeing the results of the injections.

Next steps - I'm going to go back to Dr Verheyden the injection guy for a consult and then to Dr Kline for the same and decide what my options are for keeping the other two fingers with nodules from developing contractors. Maybe radiation, maybe Xiaflex, maybe cortisone shots.....I want to stay on top of this and now let these get bad.

wow so much negativity.

Seems like there a variety of pre and post procedure experiences with almost everyone for any procedure. Hard to predict beforehand who is going to have what. My surgeries were not very intrusive and with little pain, but sometimes the condition came back very quickly - other times not. Xiaflex was extremely painful during and after - but 4 months later - reasonable results with no major side effects. It did what it was supposed to do.

The remainder of my DT stuff is nodules - probably not candidates for NA - but I would consider that in the future. I would like to use therapies to prevent having to get to that point - so am considering Xiaflex (which Verheyden recommended), RT and Cortisone - mostly to just slow things down so I don't have to deal with the major stuff frequently.

My understanding is that the Xiaflex requires sophisticated techniques which not all providers have - in order to get the best results. Even the manufacturer reps that work with docs don't have all the info, according to my doc.

Although the Xiaflex was extremely painful during and after - I would consider it again. It's more repeatable than surgery for sure, as long as your body tolerates it well - which apparently is an individual thing.

Wow the lidocaine was absolutely painless for me----the worst was the actual xylaflex injection the first time. Amazing how the treatments react differently with us all!