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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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06-13-2008, 12:21 PM | #1 | ||
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My husband says "This isn't an episode of House, damnit!"
I know that's what other people feel like... that's what I feel like too. Sorry... I have to rant. Just got out of my 2nd NVC test and don't feel like I am any further that I was 18 months ago when a dr said hmm you may have TOS, but I don't treat that... I'm a back doctor. EVERYONE is a something else doctor...... I've had Nerve Conductivity Studies done 2x now. First said no compression at ulnar or median nerves. This 2nd one says yes to ulnar nerve now, but no to neurological TOS. BUT unless I'm reading all these websites about TOS completely wrong, TOS can cause problems with the Ulnar nerve... ie: ulnar nerve is a SYMPTOM not the PROBLEM. So.....
I don't feel that I even have a doctor now since my Orthopedic essentially refered me off. My family Dr is cool and will prescribe stuff till I find someone who will treat me but has never seen this.... at least he ADMITS it... which is more than most. So, who do you see between the diagnosis and surgery (if needed). |
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06-13-2008, 06:08 PM | #2 | ||
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Dr. Harold C. Urschel Jr. located in either Dallas or Houston is a world renown expert on TOS .
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06-13-2008, 09:29 PM | #3 | |||
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Colleen- i'm sorry that you're getting the doc runaround.... I went to 2 or 3 docs, but got lucky and wound up referred to a Pain Mgmt Doc (who's also a Neurologist). Several people around here have also been referred to Pain Mgmt Docs.... before, after, and between dx and surgery. I would see if you could get referred to one that knows about TOS, and hopefully he could help out. One with PT on-site would be great- you don't want or need at PT that doesn't know what they are doing working on you.
sorry for rambling, and hope i made some helpful sense. -dabbo
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To do what ought to be done, but would not have been done unless I did it, I thought to be my duty. -Robert Morrison, Phi Delta Theta Founder Currently redefining 8,9,10 ...... . |
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06-13-2008, 11:17 PM | #4 | |||
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my new Drs office is Osteopath based - actually daughter & I see the RNLP but she seems to be well versed on the whole body, alignment and such also.
I haven't had to see her for my TOS stuff yet but I think it should go Ok if I ever need to. She & the on site PT did well for my daughter- when she was having some back spasms. [D.O.s bring something extra to medicine: * Osteopathic medical schools emphasize training students to be primary care physicians. * D.O.s practice a "whole person" approach to medicine. Instead of just treating specific symptoms or illnesses, they regard your body as an integrated whole. * Osteopathic physicians focus on preventive health care. * D.O.s receive extra training in the musculoskeletal system-your body's interconnected system of nerves, muscles and bones that make up two-thirds of your body mass. This training provides osteopathic physicians with a better understanding of the ways that an illness or injury in one part of your body can affect another. * Osteopathic manipulative treatment (OMT) is incorporated into the training and practice of osteopathic physicians. With OMT, osteopathic physicians use their hands to diagnose illness and injury and to encourage your body's natural tendency toward good health. By combining all other available medical options with OMT, D.O.s offer their patients the most comprehensive care available in medicine today. If you are not seeing a D.O. and would like help finding one, you can search our database to find one in your area, or call (866) FIND-A-DO. ] http://www.osteopathic.org/index.cfm?PageID=ado_whatis I went to a Physiatrist but he didn't officially call it "TOS". - his head PT guy was the one that did the actual in depth evaluation - the Dr did the EMG/NCV test {normal} & ordered the MRI & looked at it {normal for my age} http://www.aapmr.org/condtreat/what.htm
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Search NT - . Last edited by Jomar; 06-15-2008 at 10:47 PM. |
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06-14-2008, 04:48 AM | #5 | ||
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Hi,
This is exactly where I am at in Australia! I have seen so many Dr's who just refer me on and now I only see my local GP for medications that I tell him I need. He hasnt seen any1 with TOS before and just fumbles his way thru it with me. I have disc issues with my neck and I just go from one specialist to another to discuss who can do what and who should do what first. It's crazy. Even with my Doppler studies I seen a Dr, for my insurance claim (my side, apparently) last week who I seen write down TOS? what is the question mark all about? AHHHHH. I could scream. Ozzy |
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06-15-2008, 06:42 PM | #6 | ||
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Thanks everyone for the feedback. Yea, I understand the "tos?" also. Doppler shows total occlusion of my right extremity in all positions but the neurologist Friday said "possible tos".
I've talked with Dr. Urschel's office. He is in Dallas, which isn't too bad of a drive from Houston. He is not on any insurance plans as in-network though. If I went to see him, it would end up being out of network. I think it would be cheaper to fly to Denver or wherever than see someone out of network. I've seen Dr. Azizzadeh (surgeon) and have called Dr. Noon's office (another surgeon. Dr. A was a little too quick to cut for me. I don't know how Dr. Noon is yet... I'll have to drop all my records off for him to review before he'll even see me. I don't think he treats unless he's going to do surgery. I'm not ready for that yet. I just want someone who can manage my meds (my gp will but he's never see this), and someone who can refer me to a PT that will help and not cause more damage. I went to my PT last friday and realized that with his "first rib mobilization", he was pressing on my upper chest (just below my collar/sholder bone the first couple times. This last time he was pressing on the top of my shoulder. I even asked him about where he was pressing and said "well isn't it here? (indicating the place he was pressing the first few sessions)". He said no, that you wouldn't want to press there cause you could press on the artery more. I KNOW where he was pressing. It felt bruised for 2 days afterward. So he was either pressing in the wrong place my first couple sessions or he is pressing in the wrong place now. Where he pressed Friday hurt, but not the bruised feeling for days like the first sessions. It's so frustrating. I've called so many doctors and most are like "huh?". or "only if it's neurological"... "only if your wanting surgery now"... no clue who would even say "only if it's vascular". I haven't even found the doctor that would say that one. I guess tomorrow's calls will be for a physiatrist or osteopathic dr. Last edited by colleen; 06-15-2008 at 06:43 PM. Reason: spelling |
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06-17-2008, 01:12 PM | #7 | ||
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Calling and calling and calling doctors has paid off!
Dr. Kline (LSU) has retired. His office is referring TOS patients to Dr. Daniel Kim (Baylor Houston). Dr. Kim was trained by Dr. Kline. http://www.bcm.edu/neurosurgery/?PMID=7782 I haven't met Dr. Kim, but at least he'll should have a clue! WOOHOO!!!!!! |
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"Thanks for this!" says: | Jomar (06-30-2008) |
06-23-2008, 01:00 AM | #8 | ||
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Awesome ! Good Luck
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06-26-2008, 01:46 PM | #9 | ||
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Well, I saw Dr. Kim - NeuroSurgeon & Professor @ Baylor. He seemed good. I did feel he understood TOS, which is a first for me to experience.
I went in with my 60 page medical history, typed timeline of dr visits, list of symptoms, colored in that body diagram thing, mri/xrays, etc.. He said I have vascular and neurological TOS. He said they'd probably need to do surgery to relieve the pressure on the arteries/nerves. I asked about other types of pt or something that might help and he said it sounds like I've tried and it hasn't helped. I had a better feeling from him than Dr. Azizzadeh. Dr. A was like surgery...no problem. Dr. Kim told me he had done over 100 tos surgeries and, with Dr. Kline, studied the outcomes of the patients. He said that about 60% see some improvement after surgery and about 5% feel they shouldn't have had the surgery. He did NOT paint a rosy picture of it. More the opposite, which fits in better with what I've been reading. He wants me to see a vascular surgeon he works with and has done cooperative TOS surgeries with (Dr. Tam Huynh @ Baylor http://www.debakeydepartmentofsurger...lty&fac_pk=183). I guess I better write up a list of questions for her. It seems little time, SOOOO many questions. So basically it's function/live with the symptoms or surgery. |
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06-28-2008, 10:55 PM | #10 | |||
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Colleen- i'm glad to hear that you're getting somewhere! Its a good feeling when all the phone calls pay off.
I'm glad that Dr. Kim has taken a more conservative approach so far- it worries me when dr's want to cut too quickly. Deciding whether or not to have surgery or to try and live with it is one of the most difficult decisions. I've been up in the air for over a year- I'l set one deadline for myself, and then let it pass. I hope that you find your answer more quickly!
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To do what ought to be done, but would not have been done unless I did it, I thought to be my duty. -Robert Morrison, Phi Delta Theta Founder Currently redefining 8,9,10 ...... . |
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