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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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05-12-2013, 08:21 PM | #1 | ||
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I was suggested to start a new thread, which I'm finally doing.
Please try to read all of this, if at all possible. LONG POST AHEAD--BE PREPARED TO SIT BACK, RELAX, READ MY STORY, AND MAYBE HELP ME GET HELP. I'm so afraid/scared. I'm young, 52, I have always been in GREAT health. No genetic predispositions except for diabetes, which I don't have. I do have high cholesterol, but have put that on the back burner because this issue came up. There's so much info in this TOS section, I'm overwhelmed. Add to that how fearful I am that the longer I have to wait to get help, the more permanent this condition will be. What I think has caused my issue: About a year and a half ago, my husband and I moved to rural northeast PA because it was the only place he could find a job that paid well.Chronological Summary re: doctors:
Right now, I'm worse. The pain occurs with less movement, so I can't put my arms up as high as I could several weeks ago, and the arm pain presents itself when I put my arms only slightly behind my shoulders. Some times if I move incorrectly, the pain is so sever it lasts a couple of minutes before I can move my arm again, and it will ache for a while after that. I don't believe I'm getting frozen shoulder, just less mobility probably because I'm not doing any postural exercises. (A guess) Shoulder pain happens at night. I've found new ways to sleep so I can at least sleep some. Sometimes the shoulder pain sticks through during the day. I've been reading things in here, and am so confused. I see MRI/MRA/MRNeurograph. I see others not supporting these things to determine TOS. So many links to read through, and I'm overwhelmed so much it's taken me 3 months to get the nerve up to find a forum like this. I don't know how to find a TOS specialist. I have found that doctors who specialize in orthopedic manipulative medicine can help people with TOS, without (hopefully) needing surgery. That's how I found the doctor in NY (he's in the NY listing in this forum), but I have absolutely no idea if he's good. Ratings on healthgrades.com don't give me much to go on. I read about the Dr. at UCLA that someone highly recommends. I swear I'll go there if I need to. I need help, it's been 7 months of pain. My doctor doesn't know what to do, the specialists are idiots and they think they're right when they aren't. I truly dislike the western medicine approach of treating the symptoms, not the underlying cause. I want someone who wants to find the underlying cause, someone who knows about TOS and can tell me either I have it or I don't. If I don't, I'm pretty sure that same person WILL be able to figure out what I do have. I'm not sure about a chiropractor--my gut tells me my brachial plexus (which I can feel a swelling on the right side just below my clavicle, can't feel on the left side), is being compressed. If you've read all of this, thank you. |
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05-12-2013, 08:56 PM | #2 | ||
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Then you have another problem. To me it sounds like RSD or sympathetic maintained pain syndrome. You can look that up. I am a nurse with tos so I have been round the block couple of times.....I have sympathetic maintained pain syndrome which made me feel like I was just crazy...doctors treated me bad too....they just are ignorant and do not know about pain syndromes,,,...anyway,hope this helps...good luck |
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05-12-2013, 11:14 PM | #3 | |||
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Many have tried and failed to find a competent TOS doc in NY.
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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05-13-2013, 12:13 PM | #4 | ||
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http://surgerydept.wustl.edu/TOS_Consortium.aspx
http://www.instituteofphysicalart.com/ipa/referral/list Check out these lists to see who is closest to you. The PT list isnt TOS specific but folks have found them to be more knowledgable than others about it. I have also heard that the lists are not updated that often, but once you find someone you can google them to see what they specialize in. good Luck finding help. |
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05-13-2013, 12:19 PM | #5 | |||
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If you are pretty sure that the laptop/couch combo started this, then I don't think you really need to find a surgeon yet.
I don't know if the PT you went to was highly skilled or especially talented. Did they check your top rib/rib mobilization? Trigger points manual release? overall posture assessment? do you have a better computer set up now? so not to make sx worse? You might focus on seeking out expert body workers, advanced PT or even a chiro that has many skills/talents and does soft tissue work. Mine did and he was the most help for my version of TOS (chronic multiple RSI type) There are many things you can do at home to repair the posture and soft tissue restrictions. Youtube is full of so many therapy types, posture assessments, you can get an idea of what might be best or who to look for. Since you are so from a large town , I would suggest exploring Sharon Butler's website and possible getting her TOS plan (does have a 100% guarantee) www.selfcare4rsi.com she suggests very gentle stretching to loosen the sticky tissues.. her articles are very good - http://www.selfcare4rsi.com/rsi-articles.html
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05-13-2013, 08:54 PM | #6 | |||
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I forgot to mention that I have chronic sinusitis from allergic rhinitis with post-nasal drip. I use NeilMed Sinus Rinse to deal with the post-nasal drip.
http://www.neilmed.com/usa/products.php?=#isotonic
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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05-15-2013, 11:34 PM | #7 | ||
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05-15-2013, 11:36 PM | #8 | ||
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Thanks for the name. I'm receiving recommendations for doctors all over the U.S., just not sure what to do, who to pick. Then I would need PT, I'm sure.
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05-15-2013, 11:42 PM | #9 | ||
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Thanks for the links. I need help in finding what kind of an MD will diagnosis me. I've been to a PT who feels I have TOS, but the regimine of exercises he put me on made my condition worse. |
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05-15-2013, 11:43 PM | #10 | ||
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What can you tell me about Dr. Donahue?
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