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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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03-22-2012, 10:18 PM | #1 | ||
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Hi,
I am new to the site. I just was diagnosed with Vascular form of TOS 2 weeks ago with a venogram and have have neurogenic TOS for 2 years. I started PT a month ago and was going 3x a week. The PT was doing 1st and 2nd rib adjustments and lots of exercises, and my symptoms were getting worse. Then one night my whole arm swelled up. After an emergency ultrasound and then a venogram the next week, they found the blockage and referred me to a Vascular surgeon who wants to do a 1st rib resection. In the office the vascular surgeon sounded very non-chalant, and indicated that it was more elective surgery as I didn't have any active blood clots. I'm guessing most of the people he sees need emergency surgery and blood thinners, etc... I was kind of ****** off at the PT for the rib adjustments as they really irritated my entire arm. Since then, between consults, I've been going to 2 different chiropractors for various treatments with lasers, acupressure, and activator adjustments. Additionally, I'll go to the community acupuncture clinic soon. The arm has gotten a little better, particularly because I'm sleeping with a pillow under each arm. Any advice on sleeping positions would be greatly appreciated! The right arm is worse than the left.... At any rate my hand surgeon stated that only 1-2 mds in any given metro area actually do this type of surgery and that you have to be "fearless" as a surgeon to even attempt to perform in the small area. He personally didn't know anyone who ever did the surgery. When I talked to the surgeon, I was a little surprised that the vascular surgeon didn't want at CT scan of the area. I was reading up on the website and was happy to read about Dr. Brantigan. I really have some concerns and would love advice: 1. Does the rib grow back after the resection? 2. Has anyone worked with Dr. Brantigan? 3. What are your personal experiences with the current treatments for VASCULAR TOS/ with neurogenic complications. (I've been really scared by a lot of postings on the site about bad results)! 4. Anyone get the fibrous bundle release done before the rib resection? 5. How does the surgeon know if the resection worked? Has anyone asked their surgeon that question? 6 Where do they go in for the rib (under the arm pit, or over the rib)? Any ideas on difference? 7. Is the surgery worth the downtime and pain? Any advice would be greatly appreciated. At this point I'm thinking of flying to Denver from Rhode Island to get a more complex assessment of all the symptoms, not just from a vascular perspective. Thanks, and God bless you all! |
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03-23-2012, 10:54 AM | #2 | ||
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I am 3.5 weeks post surgery following a scalenectomy and first rib resection on my left side. I have approximately a 3" incision scar near my collarbone. My surgery was done at MGH in Boston by Dr Donahue and I can't begin to say enough great things about him and his team. I have been so impressed and my confidence in their practice makes a potential right side surgery much easier to comprehend. I see you are in RI...I definitely recommend coming to Boston before trekking out to CO. It's too early to say if my surgery was successful, as my upper chest is still numb from all the trauma. However, I can say that I've noticed an increase in my hand strength which was my most significant symptom. I had lost nearly all my hand and arm strength prior to surgery. Of course, everyone experiences TOS and related conditions differently, and these are only my insights. However, please feel free to PM me if you would like more information - more than happy to assist!
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03-23-2012, 12:17 PM | #3 | |||
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Maybe take a look at this thread as well - http://neurotalk.psychcentral.com/sh...d.php?t=166498
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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03-25-2012, 10:14 AM | #4 | ||
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1. My rib hasn't grown back. 2. no 3. I know several people who had their first rib removed for aTOS or vTOS and they are doing fine. They were able to return to work 2 to 3 weeks after surgery and have no problems since then. 4. No - And in my case, removing a fibrous band wouldn't have helped me. My rib needed to go. 5. I think they primarily look for stopping the progression of symptoms or relief of the majority of the symptoms. 6. transaxilliary (through the armpit) - Each surgeon has their preferred approach. 7. For me, the surgery was worth the downtime and recovery. Everything was far better even in the weeks after surgery than before. For me, recovery took a good one to two years as the muscles and nerves had to regrow. I had significant atrophy of the hand/forearm. The hand and forearm looked skeleton like (thin and sickly) and I couldn't use the hand before surgery. Good luck! |
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03-26-2012, 11:37 AM | #5 | |||
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Hi there, everyone is right- those with great outcomes rarely come back and post anymore because the symptoms and complications are gone- so the need for further guidence is no longer needed!
I have/had Atos and Vtos. I had my first scalenectomy/1st rib resection on my left side nearly one year ago (time flys!) and I am doing outstanding!! I will complete the right side as well this coming summer after the baby is born! The rib does not grow back I live in Tucson, AZ and had an incredible surgeon! In my case, the rib and scalenes needed to go asap- no time for other treatments (although I did do PT for a time prior to my health/arm taking a turn for the worse) My surgeon knew that the surgery worked right away while I was still on the OP table- my artery opened 100% allowing the blood to flow freely into my left arm and back to the artery again on return. Prior to the surgery, the vascular ultrasounds showed that this was impossible in my left arm and nearly impossible in my right. My surgeon went under the arm pit- it is his preference after completing this surgery for over 20 years, it offers more visuals without adding to the risk of going above/below the collar bone. For me, the surgery was a piece of cake! the downtime also was not that difficult- but I didn't have Ntos, and I know that Ntos can really complicate recovery. Good luck to you! |
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03-27-2012, 07:52 PM | #6 | ||
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2. No 3. It's frankly not true that only bad outcomes post. There are a great number of people who have chosen to accept the situation in which they find themselves. Whether they have chosen conservative care or surgical paths, they have found peace in their decision and limitations. Many are suffering without posting. 4. I'd think most Docs would only want to open you once to decrease the chances of scar tissue forming and other complications. 5. Working is subjective by both the surgeon and the patient. 6. Pros and cons on both. Visibility, potential phrenic nerve damage or severing are only a couple of factors. 7. No one can answer that question. Why are there no easy answers yet to questions regarding TOS in 2012? |
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03-27-2012, 09:43 PM | #7 | ||
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From a patient perspective, I agree with this. I wouldn't want to face this surgery twice on the same side. I know a few people who have had two or three surgeries on the same side for nTOS. They didn't fare well from the beginning. Each surgery increases the likelihood of scar tissue, etc.
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04-05-2012, 03:23 AM | #8 | ||
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