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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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10-27-2011, 01:54 PM | #1 | ||
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Hi, all. Very relieved to have found this forum. Have read many of your stories and can relate to many of them, but definitely empathize with them all.
I am 36 yo. I've been a court reporter for 17 years. Three years ago I started developing left arm/neck pain and progressive weakness. I notice I was frequently dropping things, and I found thinks like stirring dinner and drying my hair progressively painful to the point of almost impossible. My left hand goes to sleep every night and anytime I hold it up, even to read a book. I've seen my GP, a neurosurgeon, a pain specialist, four PTs, a chiropractor, and now a physiatrist. I've had negative cervical spine MRIs, shoulder arthrogram, and two negative EMGs. I finally had an MRA of my left subclavian artery, and it showed I have greater than 95% stenosis in about a three-centimeter section. They don't "think" I have a cervical rib, but the study apparently wasn't conclusive on that. Doc has referred me to Hugh Gelabert at UCLA. (I live in Boise, Idaho.) Dr. Gelabert has said I need two surgeries; first the rib resection and scalenectomy, then I'll have to come back after recovery to have my artery ballooned/stented. I've got six kids and own my own business. I've not done any actual court reporting for two months because with any activity, my hand falls asleep and swells and gets cold. I'm very nervous about the surgeries, and wondered if anyone here has had both and/or knows Dr. Gelabert. My doc here helped me find him, as I have much family in that area to help post-op. Not sure how long I'll need to stay before I can fly home, how bad the recovery really is, and would love to hear from anyone regarding their ecperiences. Thanks in advance -- I knew within about five minutes that I'd found the right place for help!! |
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10-27-2011, 02:44 PM | #2 | ||
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If you HAVE to have surgery, I think you're in good hands. I hear good things about him. Sending you support, I know it's scary stuff. Do you have neuro stuff going on as well. Sucks with the surgery you trade one set of problems for another with scar tissue and pain. Feel for you... I'm in the same boat.
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"Thanks for this!" says: | BigMama6 (11-07-2011) |
10-27-2011, 04:06 PM | #3 | ||
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Do you have ATOS too and are contemplating surgery? I wish someone would give me some alternatives as I definitely am to the point of desperation. Thanks again. I'd love to hear your story as well. I guess I should go to the intros, huh? |
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10-27-2011, 04:43 PM | #4 | ||
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With a 95% stenosis, I would imagine (just guessing) that is serious. What are your vascular specialists suggesting as options or courses of action? |
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10-27-2011, 08:59 PM | #5 | ||
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Gelabert has told me Boxtox is not a good option because I didn't get relief from the scalene block. The only other option he gave me is to try MORE PT with some of the people he works closely with. But then in the next breath he says with the degree of compression I have, I really should have the surgery ASAP, i.e., next week. The risk is clotting/aneurysm, from my understanding. I guess it's just all come so fast after so many years of symptoms and doctors and guesswork that while I'm relieved to finally have a definitive diagnosis, I'm scared to death of what my post-surgery life will be like. |
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10-27-2011, 11:12 PM | #6 | |||
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Hello,
I can tell you that some from California went to Denver for TOS surgery and most were able to fly back home within the week after or so. ( from what I recall, many years ago) Would you have lots of help after you go home? what ages are your kids? Most have described recovery as a week or 3 of feeling like being hit by a big truck. Good pain meds are a big help during this time. It is always good to get a second opinion from another TOS doc if possible, just for peace of mind. To see if another surgeon would do something different or has another approach. But sometimes you just have to go with things fairly quickly. court reporter for 17 years. ohhh, just thinking about the postures of that job makes me think forward head/forward shoulders Things might be far to compressed and changed over all those years, to get them back by PT alone, esp with the vascular system so involved. You might get lucky and find a super special treatment person, it does happen. DOCTORS & PTs List and saved PT info threads - http://neurotalk.psychcentral.com/thread135.html
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"Thanks for this!" says: | BigMama6 (11-07-2011) |
10-28-2011, 09:08 AM | #7 | ||
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[QUOTE=Jo*mar;819302]Hello,
I can tell you that some from California went to Denver for TOS surgery and most were able to fly back home within the week after or so. ( from what I recall, many years ago) Would you have lots of help after you go home? what ages are your kids? Most have described recovery as a week or 3 of feeling like being hit by a big truck. Good pain meds are a big help during this time. It is always good to get a second opinion from another TOS doc if possible, just for peace of mind. To see if another surgeon would do something different or has another approach. But sometimes you just have to go with things fairly quickly. court reporter for 17 years. ohhh, just thinking about the postures of that job makes me think forward head/forward shoulders Things might be far to compressed and changed over all those years, to get them back by PT alone, esp with the vascular system so involved. You might get lucky and find a super special treatment person. Thanks, Jo*Mar. I really appreciate the info. With them wanting me to come down next week, I'm worried about Thanksgiving with my kids (I know, silly, but always a mom first I have two boys coming home from college for the break, and then our younger ones are 12, 11, 10, and 8. My husband is a great help, but he's an attorney and having to take on all of our financial burden now that I can't work, so I/we need him to be at work when he can. Luckily he can do a lot from home, but I've also got an aunt (my "mom") flying home with me. I would love to get a second opinion, but they're making me feel as though I don't have time, without articulating specifics. Scary. Job: yes, posture is horrible -- you're exactly right. And because we work in so many different places (generally a different attorney's office every day) we're stuck in whatever chair happens to be there in the conference room for us. Ugh...I went so long watching my profession knock people out for one reason or another, but of course never thought it would be me. Has anyone had the decompression, resection, and stenting surgeries and actually GONE back to work?? I dearly love my job, and the depression from not being able to do it is quickly setting in. Thank you to everyone on here. Every single person I've told about my diagnosis has had the invariable "huh?" reaction. It's so nice to not feel so alone. Hopefully I can get through this successfully and be the "encourager" soon. Signed, Sad and Scared... |
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"Thanks for this!" says: | Jomar (10-28-2011) |
10-28-2011, 10:13 AM | #8 | ||
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10-28-2011, 12:24 PM | #9 | |||
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Might be best to make a new job focus for now and it is called getting back to healthy as best you can.
The back to work decision will come later on I'm sorry the dr didn't explain the whys & wherefore's of why to rush into surgery..... can you call and ask about that part? Is your "greater than 95% stenosis in about a three-centimeter section" all the time or positional? Did they say? If all the time, then I can see there might be some risks in waiting too long. But it would be nice to know what is causing that to happen.
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10-29-2011, 10:03 AM | #10 | ||
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My "greater than 95%" he says is 100% with arm overhead. With arm resting, his interpretation of the films are 90% stenosis on left. Says I'm at huge risk for clotting, esp given all of the swelling/pain I'm having in my hand. Said he'd rather I not wait until after thanksgiving, but that it's obviously my choice. If I wait, he wants my activities kept to a minimum. His opinion was I had a 90% chance or greater of having a successful outcome based on my films and medical history. Of course then in the next breath he says we'll have to have a pulmonary doc onsite because breathing after surgery is compromised, and my severe asthma could be "extremely dangerous" at that point. Ahhh!! I SO want to believe him, but I've read so many horror stories that it's difficult to take his word. Thanks again for the good questions to ask and the support...so glad I found you all! |
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