Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 05-13-2008, 08:58 AM #1
momzpeachy momzpeachy is offline
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momzpeachy momzpeachy is offline
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Default Still having trouble

Hi Everyone - I'm back!

I haven't been on in a while...been busy. My daughter was sick with pneumonia and had to be rushed to the ER. It just never ends!

I haven't been doing so well lately. I had some good days and still do but I have other things going on that they are trying to figure out.

My Physical Therapist is great! He sees where most of my problems are at. I have so much pain coming from the shoulder and scapular area. He taped me up to make my arm stay in a raised position. That was awesome! That really worked! I had relief for 2 days! The tape came off and my pain level went back to a level 10 instantly! So, I went to the pain management Doctor who is workign with him and she wants to do a nerve block in that area in a couple weeks. If that works, she wants to have me in the hospital and do a procedure with the surgeon under flouroscope to do something with the major nerve there. Everyone is working together.

The only other thing is...I'm having trouble walking. I went to a new Neurologist last week. I have SEVERE pain in my legs and knees. I can't walk sometimes or go up steps. I can't bend my knees at all most of the time. I feel like my legs will seperate at the knee it hurts so bad! I am loosing vision in my right eye and difficulty with balance, coordination and concentration. I am writing things backwards and get so condused at times. It's so frustrating! I took a bath the other night and needed help getting out of the tub. I then couldn't walk for the rest of the night. I can't stand much either. The Neurologist saw problems and problems with my reflexes. He also did the cold and prick test. I didn't feel it when he did it in some areas of my legs and my lower to mid back. It was really weird. Also, I feel like I have a tight band around my chest that someone is pulling real tight. I feel like I can't breathe at times. The Neurologist asked me about that before I could even ask it. The PT referred me to him seeing problems. I have a lot of pain coming from the Thoracic Spine. Not sure what is going on. The Neurologist was shocked to see that nobody ever looked at my T-Spine. They did MRI's of everything else though! So I go tonight for another MRI. The Neurologist mentioned possible MS in the T Spine or a tumor....NOT WHAT I NEED!

I have been reading alot about Neuropathy and this is National Neuropathy week. I feel that i have many of the symptoms that go with that. But yet nobody is even mentioning it! They seem to think something else all the time. THe Neurologist said if he doesn't find MS or a tumor, he said it could just be due to the TOS and now a chronic pain condition caused from the TOS! SOmedays I just want to give up! I don't get it. I really dont see how I can have MS..doesn't run in the family. I would think more likely of Neuropathy but I'm not a Doctor. Also, the tops of my feet are red a lot and last night I got an awful burning feeling in my feet and mostly in the arches! OH MY IT HURT! I actually fell over when standing...I had to get down to the floor it hurt so bad! My knees and legs were also killing me I just don't get it!

Oh and one other thing - I AM NOW DEFORMED THANKS TO THE SURGERY! MY BACK IS DEFORMED NOW! My hubby noticed it the other day after I did. My right side shoulder blade is sticking way out and up higher than the left. My back is caving in on the right side. It looks awful! I cried! i hate all of this! I'm so sick of it! I will never be normal again!

Well I have to go for now...talk with you all soon...hope all is feeling well today!

Momz
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momz of NE PA:
Right side TOS (Scalenectomy 1-14-08). Spinal problems. Thoracic Spine hernaited discs pressing on spinal cord and small tumor - still being investigated. A very tired mom who feels like giving up!

Wishing I could think more positive and be well again!
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Old 05-13-2008, 11:55 AM #2
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When you mentioned all your sx and the "hug" feeling - I thought MS also.

the scapula thing could be called " a winging scapula"
member - ginnybean had a surgery to correct hers which appeared after her TOS surgery-
her profile here-
http://neurotalk.psychcentral.com/member.php?u=1333
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Old 05-14-2008, 04:58 AM #3
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Unhappy

((((((((Poor Momz))))))))
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