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


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Old 04-05-2012, 10:07 AM #121
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Hi nospam, several years ago I saw a Dr. down at UCSF and he didn't think I would benefit from having the rib removed. He thought it was mainly scar tissue causing my problems. In fact, he said the other surgeon made a good call only taking the scalene's out. I had one of those fancy MRI/MRA's that shows everything and that's what he went by, so I decided just to leave things be.

Good luck to your wife. I hope that mitral valve keeps working well for her and she doesn't require surgery.
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Old 04-09-2012, 09:34 AM #122
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Default Done with antibiotics and Picc line

Well, I finally got the last dose of IV antibiotics on Friday(vancomycin) and they took the Picc line out on Saturday. I was on antibiotics for seven weeks. It was 11 or 12 days on antibiotics before they could do the heart valve surgery. They had to get me healthy enough first.

I'm not sure how many different doctors I had when I was in the hospital, but I would guess it was about 10 or 15. There were heart doctors, kidney doctors, and infectious disease doctors, and a few others. I couldn't keep track of them.

At first, kidney doctors told me my kidneys were failing and I was going to have to be on dialysis but apparently that all got better. I was constantly getting medicine or tested or scanned for something. It was exhausting but apparently they got it all figured out.

I also had a follow-up visit with my heart surgeon on Friday. He was all smiles and thought I was doing very well. I told him I was tired a lot and he said I can expect that for about a year. In fact, he said I had such a bad infection he wasn't sure if I was going to make it. A lot of people are saying that now that I'm doing better.

I still have a lot of tingling in my left hand.(Nonsurgical side) That really isn't normal for me. The Picc line(IV) was in that arm so I'm hoping that was causing irritation and it will calm down now that it's out. I started doing a lot of joint mobility with that arm and it feels pretty tight, so we'll see what happens. Hopefully it's not a new, different problem.
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Old 05-02-2012, 02:50 PM #123
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Default Getting back on track

It's been two months now since I had the heart valve surgery and I'm slowly starting to feel better. My energy and strength is improving but I still have some tingling and weakness in my left arm(nonsurgical side) that hasn't gone away and my rib cage is still pretty sore where they opened me up. Hopefully in time that will get better.

I've been trying to gradually increase my walking because it's supposed to be one of the most important things in helping the heart recover and get stronger. I'm still on warfarin, but the Dr. said hopefully I can get off of that in a month or so.

I just noticed it's been a year already since I started this thread. It went by really fast. I just turned 50 last week and I was hoping to have made more progress with the stretching and joint mobility than I have, but with my lower back flare up, endocarditis, and heart surgery, I've had a lot of setbacks in the last six months. Hopefully I can get back on track now.
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Old 05-24-2012, 10:32 AM #124
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Default Double Clubbin'

I finally made it back to using both of my Indian clubs at the same time on Tuesday. With my lower back issues and the heart valve surgery, it's been about five months since I've been able to do that. A nurse told me it takes about three months for the breastbone to heal solidly so I was waiting for that.

It seemed to work out okay. I have a 9 1/2 inch incision down the front of me that's a little sore but my chest didn't crack open and my heart fall out on the floor, or anything, so I guess it's all good.

I also had a heart monitor attached to me for 24 hours last week. I went to the cardiologist on Tuesday and he said everything looks good, so no more warfarin. He also said my blood pressure was perfect. It's been low since I had the surgery, and it was high for many years before that. So that was cool.

I also gained back 15 pounds of the 40 that I lost when I was sick so I'm starting to feel a lot stronger. The strength has come back in my arms and legs and my left arm(nonsurgical side) that was tingling and very weak for a few months is doing better. I think it may have gotten stretched too much while they were doing the surgery or something.

I also have a 5 pound pair of clubbells that I bought about six months ago and haven't had much chance to use them yet. I just started playing around with one of them about a week ago. I'm being really careful and just starting with one club at a time and only adding one exercise at a time. When I first got them I tried using both at once and it was too much. These things are heavy. Baby steps.
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Old 05-28-2012, 10:06 AM #125
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Default Shoulder range of motion

When I first started with the joint mobility exercises, over two years ago, my shoulders were super tight. Probably frozen, actually.

I couldn't lock my hands behind my head, touch my hands together behind my back, and couldn't come close to touching my elbows together in front of me. I can do all of that now but it's taken me this long. This is a slow process when you're as tight as I was, but it's fun to see positive progress.

My left side(nonsurgical arm) is still tighter than the right(scalenectomy side). It is also stronger and more muscular. I'm not sure if having the scalenes intact makes that side tighter or it's something that will eventually even out. My left hip is tighter too, so it's everything on that side. It will be interesting to see what happens in another year or so.
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Old 05-28-2012, 12:38 PM #126
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I'm tighter on my whole left side as well which is also my TOS side. I don't know if compressed nerves and blood vessels are making the muscles tighter, or the tighter muscles are causing the TOS, or a full circuit, or what. I do about 30 mins of PT and yoga stretches each morning to reduce the tension and even out my body.
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Old 05-28-2012, 03:42 PM #127
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honestly i dont get it

i have to stretch nonstop or all my muscles clamp down again and im not even doing anything!

my left side is stronger here too.
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Old 05-28-2012, 03:46 PM #128
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When somebody figures this out, let me know.

The stretching works temporarily, but I have to do it 1 - 3 X per day which tells me I'm treating the symptom, not the cause.
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Old 05-28-2012, 08:01 PM #129
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I am with you chroma. This is the craziest thing ever. How can you feel like your turning the corner one day, and then it is like your back to square one the next moment.
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Old 05-30-2012, 05:41 AM #130
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Quote:
Originally Posted by brmr19 View Post
I am with you chroma. This is the craziest thing ever. How can you feel like your turning the corner one day, and then it is like your back to square one the next moment.
When I went to www.andoaston.com for my free eval, they showed me how nerves can also shorten and tighten up and are often mistaken for tight muscles. It was quite eye-opening and explained many years of stretching frustration.
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