Re: My doctor and stuff

[Guest guest]

The doctor I saw in Miami was Dr. Barth Green. A

friend of mine that also tsc had a couple bad surgery

and did some research. He found Dr. Barth Green and

is suppose to be one of the best. He talks to my

friend on a regular basis and he is real close to a

cure for paralysis. He is involved with the Miami

Project. Even when my neurologist found out I sent my

MRI to miami he new who they were going to. I am not

sure that he is an expert on tsc but is an expert in

spinal injuries. I was very impressed with him and

his set up. Of course the hospital was a county

hospital and lacked a lot. he also was able to have a

pediatric neuro surgeon assist. He mentioned that the

ped. surgeon performed this type a on a regular basis.

I do want everyone to realy ask about the lying on

the back after surgery. As I said before Dr. Green

was very particular about this. (I should no more on

terms and stuff)

By the way I am pretty sure my cord was tethered at

L5 the last time. Mine was caused by a fiber tumor

that they said had been there probably since I was 9

or so. I also need to do some checking one other

item he does. He inserts something that decreases the

growth of scar tissue. You all may know exactly what

I am talking about.

I currently live in Austin. I just moved from San

Angelo. I am from Odessa and slowly moving to the

east.

On my standing issue. I do have a hard time on

telling what causes more numbness. I do get muscle

twitching at times but can not pick out a particular

cause. My heel has numbness all the time but I also

getting some burning feeling and that is from the

standing. I am not sure if it is related or my shoes.

I will talk with you all later.

On

--- V wrote:

> Hi Don,

> And welcome to the group!

>

> I've never asked any of my doctors about what to do

> or not to do

> regarding speeding up the process of new symptoms.

> I figure if it hurts

> a lot or causes more tingling/numbness, I should

> avoid doing what ever

> it was I was doing. Most of the time, things would

> settle back down.

>

> I do know that any motion or activity that bends,

> twists, or stretches

> the back can be problematic. There is no way that I

> could do a job that

> involved lots of standing. My legs have to

> constantly work to keep me

> upright. Standing is my worse position. My job gives

> me the freedom to

> sit, stand, or walk as I need to (social worker).

>

> Not sure what you mean by tail bone - the sacral

> vertebra? I was

> tethered at L,4 & 5, S1 - probably above and below

> that now, due to

> surgery. I get muscle twitches and spasm in both

> legs since the surgery

> (4 years ago) I've only had the one surgery -

> others here have had

> three and more. I've chosen to manage the symptoms

> better since mine.

>

> Who did your surgery in Miami? Always on the look

> out for new doctors

> that are versed in TCS. I don't know of any medical

> studies that

> indicate laying on side, back, or front will help

> with avoiding new

> symptoms. By the very nature of the surgery, scar

> tissue is formed

> every time you have an operation...and most will

> stick the spinal cord

> again- but hopefully more loosely, and in a better

> position. Also, most

> do not guarantee anything - but will give you odds.

> TCS surgery rarely

> totally fixes everything. In the best case

> scenario, it stops the

> progression and may help with the most recently

> developed problems.

>

> What part of Texas do you live in? I lived in

> Beeville for a while, had

> one of my children there!

>

>

>

> --

> Life shrinks or expands

> In proportion to one’s courage.

> Anais Nin

>

>

>

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