Hi Nan.

Here is my story with CTS. Fell and broke my wrist and then developed acute CTS requiring surgery. Looks like all the trauma triggered DD & LD as well. No family history of which I'm aware. My case was somewhat different because my pain kicked in quickly, was chronic and excruciating. Not your typical CTS. I have been investigating RT but doc seems concerned about reigniting my CTS and it's not anything I want to experience again. I'm 3 mos out from surgery and doing well except for this disease. I guess your decision will be based on how debilitating your CTS is. Is your CTS manageable? Have you tried splinting? Many people just cope with it and don't do the surgery. Also, I had endoscopic avoiding a huge incision in the hand which I think was a good decision.

Hope this helps!
Lily

Thank you Lily and Humana,

Any, and all, feedback is helpful as I continue to try and figure out: How much of the pain is related to the DD or to the CT and what to do next?

Along with the hand and carpal tunnel issues my LD is also progressing. Another hurdle!

About 4 months ago I completed my second round of RT to my right hand. I had already been diagnosed with mild carpal tunnel. The carpal tunnel over the past year for me has been aggravated by mostly two things: trying to gain range of motion and strength back in my shoulder after rotator cuff surgery, and by the radiation of second round of RT going down too far into my wrist. The latter happened when the field was expanded to include part of the base of my thumb. In doing so a bigger, not made to order mask was used that did not protect my wrist.

My first round of RT was immensely helpful! I had a lot of nerve tingling pain and discomfort in both hands. The RT took that away almost immediately. Softened the nodules and cords. Could not have been happier!

But wish I did not do the second round. Second round initially brought back a lot of pain in both hands, that now included the right wrist. That more intense pain decreased after 6-8 weeks. But the cords instead of getting softer as with the first round have tightened. All of my fingers are moving in more towards my palm. Though I can still extend my fingers it hurts to do so and aggravates the disease more. Instead of softening cords it has tightened them. The fingers curving in is causing the back of my hand to also curve and pull my wrist downward or forward that pulls on the back of my wrist. Not good for CT. As I evaluate day to day what hurts the most I would say it is the pulling of the cords. Or if I do things that stress the carpal tunnel.

I'm going to attempt to try some carpal tunnel exercises, splint at night, but allow my fingers to just stay relaxed. See if that helps.

Lily as far as RT goes for you. My thoughts are you would, as many people are be helped with the progression of the disease. It has slowed down the progression for me, but has not stopped it. Everyone varies with results. My personal feeling is less radiation is needed for people with thin, smaller boned, non fatty hands and feet. Like me. I have met and corresponded with many people now and have observed that those with thicker hands tend to do better pain wise with this disease and with RT. The disease likes fat I have been told. My opinion because of that, I think there is a greater chance of nerve involvement with cords and fibromas with less fat.

I think this is something that all doctors who treat with RT need to start to take a stronger look at.

Nan

Edited 07/08/14 19:12