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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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First, Hi and LOVE to you!
I think the surgeries do stop the progresssion (rate) of the disease and actually took away my most horrific headaches pretty much completely.
Now I have heard of nerves burning under the armpit area by other posters.
I know you can call my surgeon Dr. Annest in Denver Colorado and he would end up calling you just to talk about generalities of the burning nerves, I believe. He really loves us TOSers. (Not to say that there aren't other docs, too.)
But I am leaning towards wanting another look at the incision cites, surgical report, etc., by just one other doctor. Couldn't hurt.
This is the stage where you definitely do not want to push yourself, strengthen muscles or arms, or do too much so that the room that was made by removing tissue now fills up with scar tissue which then becomes painful itself.
And, as someone else said, be aware of RSD. I actually had RSD the worst before surgery - but I still have to fight it now. It reminds me of chicken pox because it hides and then comes out with RED SKIN, HOT SKIN, possibly HORRIFIC PAIN, water blisters, rashes / spots like shingles.
Now RSD can have all sorts of causes - nerves ticked off because you are allergic to a medicine or you were outside too long, or you had a PT who was pushing your body too much...and more. But it's important that we all notice the different types of pain we feel, where they happen, and what seems to set them off.
Fibromyalgia is another one to watch our for. This is one that has pain to muscles or joints, but definitely adds a lot of tiredness.
All of these are possible work comp cases - get a free consult if it looks like you start missing work, for possible benefits. Also, if it looks like you'll miss work more than 1 year, seek a social security attorney for free. Lastly, I am bedridden since about 1 year of having TOS in 2002, (til now, after surgery also) and I have a nurse 5 days a week paid for by my insurance co. There are social workers who can hook people up with county home health aides also.
Hope this all helps everyone.
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