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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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04-08-2015, 02:15 AM | #1 | ||
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Hi guys, Richard here, looking for some advice on where to go next With doctors, physio, and potentially surgeries.
Using dictation to write this, so sorry for any errors. A bit about me; I have been suffering with what my pain specialist believes to be thoracic outlet syndrome for two years now, and haven't worked for a year. Symptoms started as a bit of pain in my right shoulder after a days work, or waking up with a bit of pain. This gradually got worse To now where my neck, right shoulder, right arm, right hand, and wrist, Burn, tingle and hurt constantly. My job is on a Minesite, I spent a lot of time at a desk, and driving off-road. Later on, desk work became unbelievably painful. I have had MRIs, x-rays, CT scans, nerve conduction studies, of my neck, chest, and shoulder. None of these scans showed any abnormalities, other than some bursitis in my right shoulder. The TOS diagnosis took a year and a half! A shoulder anthroscopy removed the bursitis, But didn't do anything for the pain. Later injections into my neck facet joints did help the pain- C6-7 injection turned off the pain between my shoulder blades. The pain specialist wants to inject my scalene muscles next with Botox. If that doesn't work then I guess surgery- since they don't know what is exactly wrong it would just be a general poke about. at the moment I have been prescribed lyrica, and a anti-depressant nerve agent called Allegron- both these helped initially but now don't seem to do much. On top of this I have the opioid pain killers, tramadol, and muscle relaxant's. I only take this from time to time when it's bad. Day to day I take a pilates class in the morning , Recommended by physio-I find the gentle stretching helpful, but some exercises aggravate it. After that I take a spa/sauna. This really helps to relax the muscles. After that I take a rest, then take a run or walk, then do some more stretching, and back to the sauna in the evening. I find keeping moving helps. If I have an evening or afternoon sat on the sofa watching TV it really aggravates my neck and shoulder. The questions I have for the Forum are; 1 which specialist should I be seeing? Is it a vascular surgeon? Neurologist? Neurosurgeon? or should I stick with my pain specialist? I don't feel my TOS has been throughly diagnosed, and my hand and forearm pain properly investigated. 2 my neck seems to be the primary cause of pain now. It's weird since it started as a shoulder problem. Has anyone else had this migration of pain? 3 which doctors are best to see for report writing? I am about to go to war with an insurance company for liability. I think my pain specialist would do a good report. But it's not really her area of expertise. Would a neurologist be best? The independent medical investigator I saw hardly gave credence to my work duties causing the TOS-he was a consultant occupational physician If you have read this all this, thank you. I feel a better for having got this off my chest, and shared amongst people who can relate. |
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04-08-2015, 08:46 AM | #2 | ||
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Welcome rich88.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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04-08-2015, 09:34 PM | #3 | ||
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04-17-2015, 07:28 PM | #4 | ||
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Thanks for the advise. Il be weary of more tests. Luckily iv got a pain specialist and neurologist who both acknowledge the tos diagnosis. It's definatly I time for a vascular surgeon since the symptoms and getting worse- now hand weakness and trouble keeping my arms up. What do you do for work? I can't see myself being able to work as a geologist again due to the amount of desk work, and the physically demanding environmennt of a minesite. |
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"Thanks for this!" says: | 20YrsTOS (04-19-2015) |
04-18-2015, 12:23 AM | #5 | |||
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Have the drs clarified what type of TOS you have?
Nerve, Vascular ( artery or vein?) , pec minor also? or disputed TOS which is a mix or a sort of chronic RSI version? You don't mention swelling or heaviness, and do mention pain , so I'm guessing probably mostly Nerve.. Drs & pTs - http://neurotalk.psychcentral.com/thread135.html Or post your location for suggestions of nearby TOS docs. very useful mega crash course info - http://neurotalk.psychcentral.com/thread84.html I think most of us will suggest , if PT or anything aggravates your pain/symptoms , don't do it .. it only makes the nerves angrier. General PT will often use a standard generic plan and it rarely works out well for TOS. If you can find a highly skilled and knowledgeable chiropractor , they may be able to be of help. Especially if they use a variety of modalities, for healing. If there are misalignments at least those will be addressed so they won't impede progress.
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04-18-2015, 07:27 PM | #6 | ||
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Welcome Richard! I would also recommend that you see a vascular TOS specialist.
About work...this is something that haunts me every single day and very discouraging when I see how many people have had to give up work because of this disease. The lack of money and lack of self esteem have already become a problem for me. Although I have LTD, I am only getting half of my base pay and I miss my bonuses. We wanted to buy a house...well, it's not happening. I have no idea what kind of work we can do. Isolation from not working is getting to me big time too. |
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04-18-2015, 09:31 PM | #7 | ||
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So make sure you ask all the questions. Ask them what kind of TOS u have? If u are having surgery, what are they going to do? Please, please make sure it's a doctor that knows what they are doing. If I can be any help, please keep asking questions. Despite what I'm going through, I know the LORD is still in control and the head of my life. Keep fighting and seeking answers. TOS is a disease that is baffling the medical community. So find the best Vascular Surgeon in your area. Take care and I'm praying for u. |
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04-19-2015, 08:51 AM | #8 | ||
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20 years tos, I do remember when you were about to get your surgery, it was around the same time I got diagnosed. I'm sorry you've had such a bad outcome. I have to admit I did not want to believe you when you said this is for life but every day I seem to believe more and more.
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"Thanks for this!" says: | 20YrsTOS (04-19-2015) |
04-19-2015, 08:34 PM | #9 | ||
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04-20-2015, 12:21 AM | #10 | ||
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I think everyone is in denial in the beginning because we don't want to believe what is happening or hope the pain will just go away eventually. PT is a waste of time and can also do more damage if the issues are vascular and arterial like in my case.
Nothing left to say, I'm in pain today. Have a good night! |
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