Jo*mar,
Thanks for that advice,
after I wrote, I thought I may be asking Roz to re-write something that has already been written. Sorry about that!

This place is truly like an Encyclopedia of experience!

Pete
asb

Roz,
Looks like you didn't post much in the TOS forum here or I haven't came across them yet.
all the old posts from the Braintalk forum were lost in the crash of 06.
I'll keep looking though.

Well my internet has slowed to a crawl, but if you got to Roz's earliest posts you can follow her progress and treatments.

Dear Michelle,

Their is a test called a Neurography, this is like a very detailed MRI. Just a thought but maybe the hardware is causing nerve entrapment?

Here is a link about it:
http://www.neurography.com/

Most radiologists are not trained to read nerves so have it looked at by a Neuro. MD. If I was you I would go to a different Neuro. not the one that did the OR procedure.

Do you have inflammation?

Hugs, Roz

Dear Michelle,

If you have inflammation. You have a 25% percent infection rate after surgery. You can have an infection with absolutely nothing showing up in your blood work.

On any treatment I have had, I try to balance risk and benefit if that makes sense.

Hang in their, Roz

Hi Jo*mar,

You are very knowledgeable on the computers. Maybe i posted my TOS nightmare on B/T?

I am living in an apartment for another few weeks. Most of my medical records are in my home. I will look for them. I just don't want anyone with RSD to have to have the TOS surgery unless it's 100% necessary.

Having had TOS/RSD DX is what not like winning the daily double. Again I want to add people have TOS for very different reason's, I was Vascular.

Much love, Roz

Dear Pete,

I have alot to say and share with you.

The one advantage I had was I have MD's in my family, so when I got the RSD DX and they could't help me I knew I was in trouble.

I was told to research and research I did. I have never ever cared for the medical field I am a hairdresser, but a creative thinker. Like you I was self employed, so I believe in problem solveing as well.

The pain is worse than childbirth it really is. You must be very strong and brave to have hung on so long.

About 4 years into RSD, my RSD limb began to shake, I started having short term memory loss.
cont..

when i first started to complain about the pain my foot doc knew what it was, he would unwrap my foot and it would turn purple you could see the sweat beading off of it air would hurt it and i would guard it i would cry when he would touch it. one day i ask him how did you dx rsd so fast he said when i went into surgurey i wasnt fully under and they hit the bone and i didnt move or say anything and he said he knew i could take pain and to come into his office and cry by him lightly touching my foot he knew he also said i was text book had all the symptoms. i did have to get a mri and did the alchol test and my foot went 20 degrees colder then the other and stayed that way. i went to see 2 other dr to confirm rsd, by this time 3 months after surgery my foot was blue and atrophy has set in toes ankle are frozen wont move, again rsd was the dx.

I had two PM doctors--both of them told me to get the hardware out. I think it made a difference for me. The screws were literally touching on the nerves, and everytime I bent my toes I could feel the nerves scrape on the hardware. How can that NOT affect someone? So I took the plunge and took them out. The surgeon I had was very knowledgable of RSD and referred by the pain docs. I am very happy the hardware is out. At the same time, I don't know that it is the answer for everyone, and in some cases surgery makes it worse. See what your docs think. In my case, some of the issues had resolved before surgery (it was no longer as swollen, etc.). I don't know if they'd recommend surgery for someone who has very active RSD at the time.