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Xiaflex and Needle this weekend - my experience
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02/26/2014 01:58
sabrinatruscott 
02/26/2014 01:58
sabrinatruscott 
Xiaflex and Needle this weekend - my experience

Dear friends,

I have been a silent reader of the forum for over a year. I have been aware of 'something' in my hands since I was 15 years old! I hit the gene jackpot as my father and mother carry the disease. Both hands are severe, terrible contractions in the palm, and lumps in my feet. (I am a woman in my late 40's)

Anyway, I wanted to briefly share my incredible experience this weekend.

The Xiaflex injections:
Based on very traumatic and painful experiences I read on the forum I was prepared for the worst. And I am so very sorry for everyone's pain :(

On a scale of 1-100 with 100 being horrible pain from the Xiaflex injections - it was a 2!! yes- a two! (Dr Denkler in Larkspur numbed me really good)

I kept the hand above my head for 24-hours and did self- lymph drainage massage (http://www.youtube.com/watch?v=3PmHuanqbAQ) to help the body deal with the process. I experienced NO swelling, and hardly any bruising. We actually toured Sonoma and had a mini vacation. I has been so scared and nervous but my experience wasn't bad at all. I wouldn't choose to do it for fun - but I'd do it again without hesitation.

The Manipulation:
I figured this would be the day that I had dreaded... I was slightly sick to my stomach waiting for Dr Denkler to arrive...trying to prepare for what I thought would be unbearable pain. I hated the sounds that I heard when I did the needle about 6-months ago.

Again, Keith was so kind, so nurturing, so open-hearted...it relaxed me. He numbed me at the wrist with about 4 HUGE syringes of something (ouch but no biggie), he manipulated the hand (my husband was filming it and turned very pale but I didn't feel any pain). Dr Denkler actually added some needle work and some fascia release too, then had his assistant bandage the hand. I headed for a walk in the park with my husband (with my hand above heart level to keep the swelling down) and caught a plane back home.

I still haven't unwrapped the hand to "see" the results. They advised me to wait 2 days. There were quite a few skin tears but nothing major. I love yoga and fitness so I hope to some day do my downward dog and pushups again :)

I hope this helps to take away some of the panic-attack level fear that I had regarding Ziaflex injections. As for the results...well, we'll see. As for how long the benefits last...well, we'll see. The disease is so individually specific and difficult to predict.

My heart and love goes out to everyone who is working around this bizarre condition. I feel lucky that it s not life-threatening or causing my face to contract, or challenging my mental capacities ... and I appreciate hearing everyone's experiences and knowing that I am not alone.

Much love,
Sabrina

02/28/2014 05:23
littlepeaks 
02/28/2014 05:23
littlepeaks 
Re: Xiaflex and Needle this weekend - my experience

Hi Sabrina --

Glad everything went well for you. Just wanted to point out that, according to Xiaflex's instructions, it states, "Administration of a local anesthetic agent prior to injection is not recommended, as it may interfere with proper placement of the XIAFLEX injection." My doctor said that is so he can be assured he's not injecting the Xiaflex into a nerve. I asked him if that happened, would I jump through the ceiling? Without anesthetic, mine was pretty painful -- about 8 on a scale of 1 to 10, but tolerable. So, for those reading, if your doctor doesn't give you an anesthetic prior to the injections, don't badger him.

For me, I had quite a bit of bruising and swelling, and they gave me a compression glove to wear with the splint. I am not sure if that helped -- I hated it, because it got all sweaty, especially when I slept. The thing that angered me was that the place that made the splint insisted on me filling out my life's health history -- all for a stupid splint and a copy of hand exercises. (But they did let me choose the color of the splint and the Velcro tape.)

BTW, I started doing hand exercises as soon as I came home from the finger extension bit. The next day I was practicing piano exercises, to try to strengthen my fingers. (I am 66 and now trying to learn to play the piano). My doctor said I could use my hand for anything I wanted as soon as he finished the procedure, except doing strenuous things -- like chin-ups -- that would put a lot of tension on my tendons, and possibly rupture them.

BTW, I had Dupuytren's for at least 30 years, but it wasn't until the past two or three years that my fingers started contracting (on one hand only -- so far).

Hope you have a speedy recovery --

Jim (aka littlepeaks)

Edited 02/28/14 07:28

03/04/2014 18:40
klm2050 
03/04/2014 18:40
klm2050 
Re: Xiaflex and Needle this weekend - my experience

Sabrina - Thanks so much for the report. I saw Dr. Denkler in January for NA on my right hand. I have been meaning to post what a terrific experience it was - he could not possibly be nicer or more skilled. And I've seen them all - Drs. Badois, Lellouche and Lermusiaux in Paris and the equally wonderful Dr. Eaton in Florida, who is no longer practicing.

Keith Denkler recommends Xiaflex and NA for my left hand and I plan to fly back out to California for that. Please let us know the severity of your Dupuytrens when it was treated and the results once the bandages are off. My left hand is pretty much a train wreck - have lost track of the number of needle treatments on it, open surgery 8 years ago that had a good result for all of about 1 year - my palm looks like a small mountain range, huge cords, scar tissue from the surgery and a boutonniere deformity in the pinky. So, we'll see what Xiaflex can do - so nice to get your detailed report. Thanks. Kristen

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