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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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10-26-2011, 02:50 PM | #21 | ||
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Really interesting about the NCV finding issues. I wish my neuro would have zapped me in more places besides neck and arms. *Not that I would have any really any more of a strategy. What sort of conservative care are you doing for stretches / muscles, etc. Have you ruled out vascular involvement? How did you get TOS? |
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10-26-2011, 03:24 PM | #22 | ||
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I think you're right about psyche playing a BIG role. Seeing children in need and the courage that they show really does make you step back and assess your own outlook on things. When you are low you focus more on the pain and that in turn seems to intensify it! I'm trying sooooooo hard to break this vicious cycle. I've been hit really hard by anxiety/depression and I now know that its now or never!!!!!!! I had my 1st visit with a therapist today to undertake CBT. I'm forcing myself to try new things. I'm also going to attempt Tai Chi and join social groups. OK I know its not like the rush of being at the gym ( which I miss desperately ) but thats about my limit at the moment and the quicker I get my head used to the fact than the quicker I can accept this life of limitations. I am sad that I can't do all that I used to but I'm here, I have a beautiful family who support me..... I owe it to them to at least try my best. Yes its difficult to smile when you are hurting so surround yourself with joyous things...... It's all so easy to withdraw yourself from life and focus on the negatives. I do it myself ( too much )!!!!! You have to teach yourself to live again.... but this time more gently! I want to make the most of my life, however different it may now be. Best wishes to you all SD38 |
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10-26-2011, 04:24 PM | #23 | ||
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Well put SD38. How is your healing coming. When (hopefully never, but) will you know the resulting scar tissue damage on your nerves on the operated side? How long does it take for the complications to come, if at all? I assume being in the UK, your surgery was "free" ? Is your therapy as well? I guess there's good and bad with the NHS.
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10-26-2011, 06:08 PM | #24 | ||
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damn I've just spent about 15 minutes typing a nice long post to you and for some reason it wouldn't submit....ahhhhhhhh I'll make this brief. In short.....well if thats possible for me. The healing, its still healing! I sense that scar tissue damage is potentially very easy to get after this sort of TOS surgery. I definitely know when to take things slow. The risk is high and I think it wouldn't take long before complications occur through over exertion. If you dont rest sufficiently than evidence is immediate, basically signals are there if I do too much too quick and your body definitely tells you what you can and can't do.....and what you can't do is rush. I still get numb hands occassionally at night and ache with little exertion. I've also gained a new symptom post op, Pulsatile tinnitus- from which I've received no help for regardless of my mentioning it. So come Friday I'm back to my Gps to ask for yet more help, and to experience their ' I'm bored with you now look'. Yes UK NHS is free ( thats about it ), its pretty much CUT AND RUN. After care is non existant and its up to you to get therapy ( again free but basic). Nothing is offered after an op and PT or advice is literally given in 1 minute while you are still drugged up in the hospital... its a joke. My experience was an eye opener. You are very much on your own..... the attitude is like, well we've done our bit - move on. No compassion. Is it different in the states? Because its done through insurance and stuff is it more personal with follow ups that actually assess and monitor your post op outcome? Anyway, KEEP STRONG and best wishes SD38 |
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10-26-2011, 06:10 PM | #25 | ||
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Yes, in that they send you a bill after. But pretty much the same here. If they can find a way to toss you out in the cold, they do. From my experience, doctors are more willing to help. But typically insurance will "deny" your request and you're back to square one.
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10-27-2011, 05:16 AM | #26 | ||
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What stuns me is that initially these people SUPPOSEDLY choose this profession to help others and to try and serve those in need. What has happened to society where they have got to the stage where its just about the job/money and that's it. Come on medical staff..... COMPASSION!!!!!!!! I believe it's their attitude that makes sufferers SUFFER all the more. It's more than enough that we have these symptoms but an unsympothetic doc/surgeon just adds to it. I find that the lack of compassion leads to patient frustration, which then leads to depression followed by stress and more pain. Can they not see the vicious cycle that we are in and they contribute to! AAAHHHHHHHHHHH. Even though we have many occassions when the health situation gets on top of us I do feel that those of us that suffer on a daily basis are really strong because otherwise we would not be here anymore. Surely we should be respected by the medical profession for enduring with it NOT dismissed. KEEP STRONG everyone. |
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10-27-2011, 11:59 AM | #27 | ||
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What I want, and we have a right to demand, is effectiveness. How did the ER of a top ranked hospital discharge me with "undiagnosed chest pains"? It's not like TOS is new. It's been around for decades and I'm not the first person to show up in the ER with it. In software engineering we typically stay on a problem until it's fixed. And we use problem solving techniques like "process of elimination" and "try a different test". Some doctors do as well, but not enough of them. I also don't see any advances regarding TOS. What was the solution 20 years ago? Removing the first rib and scalenes, and hoping that (a) it works and (b) there are no complications? What's the solution today? Same thing, right? Where's the progress? |
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10-27-2011, 12:09 PM | #28 | ||
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TOS seems so relatively rare, most doctors I have met really know little about it. I have brought it up to doctors and in many cases I know more about the pathology and nuances than they do. It's why I'd make the trip to an expert before doing anything non-conservative.
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10-27-2011, 02:37 PM | #29 | ||
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10-27-2011, 03:20 PM | #30 | ||
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I say/think improvement is relative. If you can sleep better knowing you're not in danger of a life threatening blood clot or worse... That's peace of mind. Obviously you've gotten improved circulation so thats a big plus!
No doubt the surgery is invasive. I couldn't imagine knowing you're due for a second one. But I guess what are your alternatives. Just hoping you don't get scar tissue... |
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