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


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Old 11-16-2012, 12:51 PM #101
Nottherightkindofdr Nottherightkindofdr is offline
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Thanks for your support TOSmom and for reminding me Hope. Dr. Pollack, the neurologist, said that twenty years ago when he first started his practice he would refer people to surgery and he just got really discouraged. He said he had referred people to Dr. Noon in Houston and Dr. Sanders in St Louis. My thinking is that a lot has changed in twenty years, and as my boyfriend reminding me, of course he's going to discourage you, you're going against his medical opinion. He said, I hope you prove me wrong. And I just have to be determined to prove him wrong.

Thanks for bringing up the person you've met 3 years post-op. And you're right when Dr. Pollack first told me I had TOS, I just saw doom and gloom because I didn't want to live on medication. AND I wanted to know I gave myself every chance I could. I tried physical therapy. I've tried medication and today I can't leave the bed because I'm in so much pain. When I found out about Dr. Pearl and when his next opening was the last day of my semester, I felt it was the right thing. It's just hard when someone shakes that by telling you you'll be on disability if this thing doesn't work out. Thanks for reminding me to go with my heart And especially for bringing up the person you met who was 3 years post-op.
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Old 11-16-2012, 01:57 PM #102
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Keep your chin up! Not much longer for you and my daughter!
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Old 11-16-2012, 02:47 PM #103
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I think many of the professional sports persons don't want to talk about any injury or surgery as it might affect their professional status and salaries for the future.


Also we rarely hear of good outcomes on forums like this, usually we read of pre dx and pre op and some post ops during recovery times, but in general they stop posting much after they have a good recovery.

In our useful stickys there is a pub med article - 2009 surgery results study-
http://neurotalk.psychcentral.com/post777901-82.html


I still suggest leaving it as a last option - unless no improvement with expert therapists and/or severe symptoms/pain are occurring.
( therapy will usually require many months to a year or more and even longer if working or doing activities that aggravate)
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Old 11-17-2012, 09:53 AM #104
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Default My thoughts on this subject

Some doctors do not even believe in neurogenic TOS much less the ability for the surgery to correct it. I think I would trust Johns Hopkins, Mayo, Cleveland Clinic, Baylor etc. before I would my local doctor on the subject. The spine surgeon who operated on me rolled his eyes when told I was given this diagnosis. I visited three different surgeons before going to Baylor and all seemed to put the success rate at 75 - 80%. Success rate covers completely eliminating the symptoms to significant improvement. The question is what does the other 20% make up. Only one doctor answered that for me and he said half was no change and half got worse. The people who got worse may have gone that direction anyway without the surgery.

Like some of you my condition got so bad I really did not feel I had a choice and my symptoms clearly matched everything I read. Also I prayed about this long and hard as did everyone close to me. That may not mean much to some but it is everything to me. Given my recent setback with the blood clot some may say look at him to see what can happen. I don't see it that way. I do not want to put too much detail out on the public internet but I see a pathway to a better quality of life that was not there before. I have no regrets and plan to work my tail off in PT to get the most from this.
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Old 11-17-2012, 05:36 PM #105
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Romans8! Glad to hear from you again. Are you out of the hospital yet? I hope so. I like your positive attitude! The closer it gets, the more doubts are creeping into my mind! But I keep thinking...what choice do we have? We have to try something. I have confidence in Dr P and Baylor. Keep updating us, ok? We all really care about you and your progress. I have been praying alot for you and my daughter. I have faith that things are going to work out for you both.
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Old 11-17-2012, 09:08 PM #106
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Originally Posted by shengggmd View Post
Carpenter did not have classic presentations of ntos. He had mainly hand symptoms. Tingling and numbess. He was seen and followed by experts in saint louis that adviced against surgery. And subsequently went to texas. It is important to distinguish his tos symtoms and those of majority others.
I have read many of your posts and I want to thank you for taking the time to further educate us. I did not understand exactly what formed the triangle until you explained. While I experienced some bumps in the early going of recovery I can already tell the surgery was a resounding success as the awful exploding pain in the scapular area is gone. I still cannot believe I carried that as long as I did. I am left with a severely atrophied and somewhat painful right side neck and shoulder and wondered if you could share what you believe to be the most effective physical therapies. I also have left side TOS that has only been present for less than a year although it progressed rapidly. However the problems on the left side are very different than the right and it has me wondering if it really is TOS. It really affects my upper arm and shoulder as I cannot straighten my arm or raise it above my shoulder. My scalenes are tender on that side so maybe it is TOS. Anyway I am determined to heal it through PT but I am not sure your average Joe PT knows how to do this. You say PT is the most important piece of the puzzle so can you share more about it?
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Old 11-17-2012, 09:13 PM #107
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Romans8! Glad to hear from you again. Are you out of the hospital yet? I hope so. I like your positive attitude! The closer it gets, the more doubts are creeping into my mind! But I keep thinking...what choice do we have? We have to try something. I have confidence in Dr P and Baylor. Keep updating us, ok? We all really care about you and your progress. I have been praying alot for you and my daughter. I have faith that things are going to work out for you both.
I am home and thank you for your prayers. I am doing well considering what I have been through and believe I am back on the path to healing. I experienced great anxiety leading up to the surgery so I understand what you and your daughter are experiencing. Be strong and remember who is the one who both afflicts and heals.
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Old 11-18-2012, 05:12 PM #108
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Dr. Pearl is awesome! He answered any questions that I had and also helped put wife at ease about the surgery and answered all of her questions as well. I had my symptoms for about a year and a half and things got better in the beginning but when baseball season started up my symptoms flared up and wouldn't go away. I coach high school baseball in the spring and pro baseball in the summer so I throw a lot of batting practice. I felt like your daughter in that I was ready to get it done and over with so I could move on. This baseball season will be a big test as to how I have recovered.

As for the first day of school, it was tough at times, because i left my pain meds at home on accident, but I made it through the day. I was quite exhausted when I got home and was asleep by 8:00 that night. Today was a little better because I took a pain pill after 1st period and I made sure I didn't push myself too hard. I still get "winded" some because it still hurts to take deep breaths. I also made sure I stayed out of the hallway during passing periods so nobody would bump into me. I'm glad I went back though because it forces me to walk more and get myself back in shape.

I will say that this has been the hardest and most painful surgery for me. I have had an elbow and both shoulders worked on and the pain I felt with those seems very minor to what I have felt with this surgery. Luckily I have pain medication around for when I really need it.
hello! Just hoping for an update...how was your first week back after surgery? How is your pain level? Is your pain from your tos or from the surgery? Have a great rest of your weekend.
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Old 11-18-2012, 06:27 PM #109
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Did some horsin' around this weekend - and I'm not in agony!!!! GIANT SMILE!!!!!!!
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Old 11-18-2012, 07:51 PM #110
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That is awesome! I was wondering how your horse was doing! I know that you are on cloud 9 & you should be! That is so great! I am so excited for you
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