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Re:my story- a bit long

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In a message dated 10/03/2000 6:28:48 AM Eastern Daylight Time,

grigg@... writes:

<< Hi Janet,

Why don't you introduce yourself, let us know your chair history a little bit

better :-)

Kathleen

WACMA list manager >>

Hi Kathleen and all,

The following is a condensed version of my story. Here goes...

4 1/2 years ago, I had a work related injury. I injured my neck, shoulder and

left arm moving office things that were too heavy for me to lift.

I went out on workers comp. and the DR's told me that I had impingement in

the AC joint of my left shoulder. I was then operated on to correct this.

After the surgery, the pain was still the same and my neck was still killing

me. Plus I was getting numbness and pain all the way down to my fingers in my

left hand.

As I was also very overweight, the DR's kept blaming all of my physical

problems on the weight. So in 1997 I had a gastric bypass done, and dropped

150 lbs. This made me feel better, but the pain was still there and getting

worse. Now my left leg was extremely painful, and I had no power in it. I

have to one foot it going up stairs.

My DR's said I needed knee surgery. This was done. It did not help.

Because I was in so much pain still with my left shoulder, they did another

surgery on it, and it did not help. I can't raise, lift, carry, push, pull,

or write with this arm, and I am left handed. This presents a continual

problem. Lucky me...Surgery did not help.

I kept telling my DR's that my neck hurt a lot, and there answer to that,

was, that it was related to my shoulder, and just muscular spasms.

The DR's decided to do surgery on my left wrist, for a tendon release. No

help there again...

In between all of this, I have developed a chronic sinus condition, constant

diarrhea, migraines (15 to 17 day average), shallow breathing, skin

sensitivities, but lack of feeling, insomnia, major depression, a limp,

trouble swallowing, heart palpitations, dizziness or lightheadedness, etc.

DR's kept treating everything separately. They did not relate everything

together. The next step to trying to rid my neck and shoulder pain, was to

remove 1 inch of bone from the shoulder a/c joint and leave it disconnected.

(OUCH- did not sound like fun)

I finally persuaded my dr. to request an MRI of my neck before we went that

route.

On August 30th, 2000, I was told by my orthopedic surgeon to go see a

neurosurgeon as soon as possible. He would not tell me what was wrong in the

MRI, but said a neurosurgeon would explain.

So, I saw 1 surgeon and he said that I needed surgery right away. He said

that I had an Arnold Chiari Malformation with 8 mm herniation of my tonsils,

and Syringomyelia with a syrinx from C4-T1, lordosis, and degenerative disc

disease. He ordered an MRI with contrast of my neck and brain.

The results of those MRI's showed, ACM 1, 12 mm herniation, a syrinx from C1

to T1, another syrinx at T4 to ?, and lack of blood flow to my brain via the

brain stem. I don't know how big that syrinx is yet, I won't know till next

week. And they are so large that they are expanding my cord. Well, when my

original neurosurgeon saw this, he said " I would have no problem with you

getting a second opinion from someone who specializes in this, I have only

ever seen 2 to 3 cases like this and never as bad as yours. "

So I came home crying, and confused, and decided to empower myself with the

Internet, and thank goodness, all of you! I went to see another surgeon in

Manhattan, NY, at Beth Israel Hospital, and he said my case was " moderate to

severe " . He agreed that surgery was warranted. Surgery was scheduled for

October 17th, 2000. In less than two weeks.

My dr. is going to do the decompression surgery first. Then in about 6 weeks

we will have a follow up MRI, and see where the syrinx are as far as size (We

hope they will go down). We will make a decision then as to what to do at

that point.

I am scared to death. But I am truly optimistic about the possible success of

this surgery. I am hoping to feel better, and resume at least part of my

life. The doctor tells me that this will be a life long problem, and that he

cannot guarantee anything, but he will do what he can.

So, there it is, my little story. I am sorry it is so long, I condensed it as

much as possible. Thanks to all of you for reading and understanding. You are

all with me everyday, I hope one day we can all feel much better!!!!

Hugs to you all,

Janet

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