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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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11-09-2006, 11:49 AM | #11 | ||
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I am hoping and praying for you Victoria.
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11-09-2006, 04:04 PM | #12 | |||
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Blessings to you.. hang in there
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11-10-2006, 02:04 AM | #13 | ||
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In Remembrance
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Hi Victoria,
I do have Manageing pain, she stresses to put an end to pain, before pain puts an end to you! The only thing, I really found helpful is in chapter three.... suggestions on relation and breathing techniques! Also CRPS, I have been Dx ed with this and from what I learned is that some doctors calling "RSD" use these terms instead... that is what I have been told anyway. Dr Togut does a wonderful job with his "Trigger Point" injections, he uses Marcaine due to the longevity of the medication and when you are in a major flare this seems to quell the pain within minutes! Do not get me wrong, I have been stuck in one sitting up to 11 times, though the pain is worth the gain. Once you receive them make sure to take it easy even though you may seem like "super man/wonder woman", but to make it last I suugest going home taking a nice HOT bath and vegetate the rest of the day... let us know how you make out Mark-n-Goober
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It is always a mistake to take kindness as weakness . First you forget names, then you forget faces. Then you forget to pull up your zipper. But it's worse when you forget to pull it down. . |
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11-10-2006, 05:26 PM | #14 | |||
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Hi Victoria,
hope to see you on the RSD site, I have CRPS (RSD) and TOS, had decompression surgery and a sympathectomy done at the same time, I think my CRPS has spread and too early to say if I am better from surgery...... |
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11-10-2006, 07:38 PM | #15 | ||
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Vic,
I really am so sorry, I hate to hear anyone get this diagnosis. But I would suggest having another discussion with the Dr to clarify if he is definitely saying you have RSD, which is the older and more commonly used term for CRPS - Complex Regional Pain Syndrome. If that IS the case, the first thing that should be done is stellate ganglion blocks - these are done both for diagnostic reasons and also because, if done early enough , a series of these blocks can sometimes put RSD into remission. It's standard treatment for RSD, and if he isn't knowledgeable about treating RSD patients, you need to be referred to a Dr who is. It's REALLY important! Teaching and university hospitals are most likely to have Drs experienced with conditions like this, while other Drs rarely see them in their entire years of practice. The best Drs will offer lots of options, continue to try things, keep current on research, while others will shortly throw up their hands, say they've done all they can and just maintain you on pain meds. The former are the type you want to find, I've been with both and am glad to say I am finally with a REAL PM Dr. Please talk to your Dr, ask if by CPRS he means RSD, and if so, will you be getting the Stellate Ganglion Blocks soon, ok? I don't have the web address but RSDHope is a great site, tons of resources. The RSD forum here is also very active and helpful. And quite a few of us here also have RSD, unfortunately, you're NOT alone in this - please reach out, ask questions, vent. You know there's always someone here ready with a listening ear or a shoulder to (virtually) lean on. Keep hanging on - stress does make it a lot worse, staying calm can keep it less active. For me, staying warm is also key, since my "thermostat" is broken. The SCS seems to be doing an amazing job of relieving the worst of the RSD pain, which has always been in my right hand and forearm. Both arms, fingertip-to-shoulder feel pretty good, as a matter of fact! Only 5 more weeks of not bending, twisting, reaching or lifting and I'm good-to-go! And for a special treat, I'm allowed my first shower today, a week after surgery- whoo boy, am I ready for it ((((e-hugs)))), beth |
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11-13-2006, 01:03 AM | #16 | |||
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Wow what amazing support guys thanks
Don't think dx is correct......crps is supposedly now a catch all for rsd and crps 1 and 2 so he thinks I have this 1 with neuropathic pain. I still think is muscle pain due to tears in either tendons or major muscle damage dont have the allodynia or hyperesthestia...sp....so??? do get vasc and neuro changes.....tight muscles blocking the nerves and vessels....??? just my thoughts as a nurse.......but what the hell do I know I had bupivicaine injected about 8 injections no pain.....just tiny pricks in skin but felt it later........he was good and is an amazing doctor I like him and he does know what he is talking aobuta....tested him...you guys know what I am like....lol so your input?/??? anything will help thanks all for your hugs and prayers......oh and I don't think they worked???? I guess if I have to ask they didnt???? hugs back and the prayers Victoria
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