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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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03-15-2012, 04:10 PM | #1 | |||
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I have eliminated Dr. Ahn from consideration. Drs. Gelabart, Angle, and Fujitani remain. I'm very disappointed that UCLA still hasn't scheduled me for the tests and follow-ups Gelabert ordered even though I've been reaching out to them to inquire of the status. What a slow moving machine!
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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03-15-2012, 07:33 PM | #2 | ||
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03-22-2012, 08:28 PM | #3 | ||
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The Eve Intelliskin arrived while I was out of town so I didn't get a chance to mess with it until recently. My initial impression was tiny! I pulled it out of the bag and it looked like it could fit a Barbie. I had ordered a medium based upon their online sizing and 90% of my tops are mediums in my closet.
Once I wrangled it on, I wore it for only 10 minutes. The instructions say to wear it for 30-60 minutes the first time, but TOS has made me not stupid. Live and learn - less is ALWAYS more. Although I liked the overall design of it, the shirt was very uncomfortable, not being able to breathe and loss of your well padded Victoria Secret bra could be a sign the thing is to tight. Took it to my PT and she too liked the design of it, but felt I would harm myself more trying to get it on and off. The sleeves as well were compressing the life out of my arms and I have thin arms (lack of use will cause wasting of muscle mass ) Back in the bag it goes and sent back to the manufacturer for a large. If the next size is correct, I do think it has a drastically better design than the S3, especially concerning the collarbone/rib area. It doesn't address getting the sternum up at the base of the diaphragm, but the scapula design seems well constructed. Keeping fingers crossed the large will have some potential in it. |
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"Thanks for this!" says: | chroma (03-22-2012) |
03-22-2012, 10:28 PM | #4 | |||
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That definitely sounds like the medium was too tight. I have relatively large arms, chest, and neck and don't have any discomfort or breathing impairment (I wear the men's XL). I'm hoping the large works out for you. I don't think you are supposed to wear anything under it, even a bra...but what would I know in this regard? My wife wears multiple different women's sizes depending on the brand and the garment. I've learned to always by the smaller of the sizes and let her exchange if she needs to rather than insult her.
I had the unpleasant experience of having to take the IntelliSkin on and off while having an IV in my arm in the ER. With my wife's help I was able to very carefully get it on and off one arm at a time only having to raise one arm over my head. It may take a little practice but the stretchiness of the shirt helps you to maneuver it on if its the right size.
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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03-22-2012, 11:22 PM | #5 | |||
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I saw Dr. Roy Fujitani at UC Irvine today. He was very knowledgeable regarding TOS and knew of all the other vascular guys in my area. He was specifically highly complimentary of Dr. Gelabert. Fujitani is definitely a good option if you are in Orange County.
I feel very confident in both Fujitani and Gelabert, however I am not comfortable having surgery in the UC system. The UC system is so slow moving and impersonal for my taste. Tests and follow up appointments are scheduled weeks out and sometimes it is over a week before they even call you with the follow up appointment. I don't any more extra time to navigate the UC system as my employment FMLA clock is now ticking. Also. medical residents are "learning" on you constantly and I fear that they will also be "assisting" in surgery. I actually had a nice long conversation with Dr. Ahn. He called me after I cancelled my angiogram/angioplasty. I am still very impressed with his technical approach and evolution. He is obviously trying to be a trailblazer and I think he may be on to something. Only time will tell if his peers accept and validate the balloon angioplasty as a more effective diagnostic. I just felt more like a test subject than a patient, and I believe I made that clear to him (I think many surgeons operate like this). I am moving forward with Dr. Niren Angle. Dr. Angle and Dr. Gelabert were by far my favorites in terms of taking a detailed history but most importantly compassion. Dr. Angle went above and beyond taking genuine interest in my pain management and taking time to make sure he was answering every question to my satisfaction. My engineering background makes me very detail oriented and he was willing to go as deep as I desired regarding his surgical procedures. His confidence and encouragement has truly uplifted me. Dr. Angle has ordered an MRA/MRV at my request just for my own peace of mind. My MRI in 2010 was without contrast, only in the neutral position, and a 1.5 Tesla. We'll see if a 3T scan with contrast yields any new information.
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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03-23-2012, 09:24 AM | #6 | ||
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Marc:
I understand you don't like the UC system, but you may want to consider taking a look at Justin Brown @ UCSD. http://neurosurgery.ucsd.edu/justin-brown-md/ Anne |
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03-23-2012, 12:03 PM | #7 | |||
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I've already considered Justin Brown. I'm just not comfortable with seeing a neurosurgeon who only does scalenectomies for this. I skipped Dr. Filler as well and Justin Brown seems to be along the same lines. It appears that Dr. Brown's team offers Filler's MR Neurography. The "The UCSD Center for Thoracic Outlet Syndrome" seems to be for marketing purposes as I believe the vascular guys are better equipped to dealing TOS than neurosurgeons (My TOS is vascular and neurogenic). Niren Angle was the chief of vascular surgery at UCSD until 2010. The fact that Justin doesn't have a vascular surgeon on his team doesn't add to my comfort level. I haven't found a single person online who has had surgery with Dr. Brown. If I was convinced I only needed scalenectomy, I would definitely see these folks as they are covered by my insurance while Dr. Filler is not.
UCSD Center for Thoracic Outlet Syndrome (TOS) and Upper Extremity Pain Team members: Neurosurgeon: Justin brown Clinical neurodiagnostics: Geoffrey Sheean Intraoperative neurphysiology: Jeffrey Gertsch and the UCSD Interventional Neurophysiology Service Radiology: Afshin Karimi (MRI of nerves), Tudor Hughes (ultrasound of nerves) Pain medicine: Gregory Polston Sports medicine: Natalie Voskanian Specialist therapy for TOS: Carter McElroy Basic science: Nigel Calcutt, Wendy Campana Quote:
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Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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"Thanks for this!" says: | olecyn (12-29-2012) |
06-18-2015, 06:19 PM | #8 | ||
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You know Justin Brown came to UCSD after working g with Dr Thompson in St Louis right? And be works with a cardiothoracic surgeon if he does bone needs to be removed. Like Dean Donahue's specialty.
[QUOTE=Anne4tos;863348]Marc: I understand you don't like the UC system, but you may want to consider taking a look at Justin Brown @ UCSD |
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