Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Old 04-08-2013, 12:59 AM #1
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Default Picking a Surgeon

After nearly two years of horrifying pain, I think that I've finally been diagnosed with TOS. I am in Los Angeles and I'm now searching for a surgeon to help me. I know that vascular surgeons perform this often, but I really want a neurosurgeon to perform the operation. In my research, I've found only a few in this area that do the procedure (or at least advertise that they do) and I have no idea how to choose the right one, aside from a brief personal meeting/consult.

None of them accept insurance, they are all considered pioneers in the field, all of them have great reviews and then even more horror stories.

Dr. Sheldon Jordan

Dr. John Knight

Dr. Aaron Filler

Dr. A. Lee Dellon in Nevada & Maryland

Guidance? Aside from telling me to meet with all of them and see who seems the most compassionate and helpful? They each have $500-700 consult fees. Also, any ideas of price ranges of TOS surgeries?

Thanks
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Old 04-08-2013, 01:41 AM #2
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Did you guys have a surgery with Sheldon Jordan? How'd it go? No insurance right?
Sheldon Jordan is not a surgeon. He is a neurologist who treats TOS non-surgically (at a high cost). If your insurance has out-of-network coverage, they may partially reimburse you but you have to submit everything yourself. He charged me $550 for the initial consult.
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Old 04-08-2013, 01:48 AM #3
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What is your reasoning for wanting a neurosurgeon over a vascular surgeon? Even my neurosurgeon advised me the majority of TOS experience lies with the vascular guys.

I would avoid Aaron Filler. I haven't heard of the other guys on your list.

There is a TOS neurosurgeon at UCSD which should be covered by most insurance -The UCSD Center for Thoracic Outlet Syndrome
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Old 04-08-2013, 02:41 AM #4
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Also, please post your symptoms and how you've been diagnosed. We will be happy to help you navigate this journey.
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Old 04-08-2013, 10:40 AM #5
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Thanks guys, here's a brief time table of my symptoms:

9/2011 - Slight discomfort in left shoulder blade region

8/2012 - Pain in left side neck

9/2012 - More pain in left shoulder blade and left side neck

11/2012 - More pain and mirrored symptoms developed right side neck and shoulder blade and front of neck

12/2012- Suprascapular nerve release left side (bad diagnosis, no effect)

4/2012 - Extreme pain both shoulder blades, both sides/front of neck

I have attached many of my reports and records so that you may review them.
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Old 04-08-2013, 11:20 AM #6
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Mainly because I feel if there is something terribly wrong with my nerves, that they will be able to handle the transfer/repair
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Old 04-08-2013, 11:39 AM #7
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Any idea of how you got TOS?
repetitive motions, static desk postures, sport related, whiplash or other injury?

Any advanced PT or bodywork/expert chiropractic explored yet?

What kinds of tests have you had so far?

The more info you can share , the better we can help you.
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Old 04-08-2013, 11:50 AM #8
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Any idea of how you got TOS?
repetitive motions, static desk postures, sport related, whiplash or other injury?

Any advanced PT or bodywork/expert chiropractic explored yet?

What kinds of tests have you had so far?

The more info you can share , the better we can help you.
Sorry I didn't give more info, it's just that the pain really deters me from doing much typing. What I think brought this all on was riding a scooter with a heavy backpack to school for about a mile a day for a month. I was bent over to hold the handle bars and probably carrying at least 35 or 40 pounds, sometime over just one shoulder. It was probably a combination of this repetitive movement, poor posture, slightly rounded shoulders, and pushing too hard in the gym.

I've seen 3 really good PT's with 3 very different approaches, several chiropractors, massage therapists, many orthopedic surgeons, spine surgeons, neurologists, and neurosurgeons.

My EMG's don't show much beside mild cubital, MRI's of brachial, spine, and shoulders show nothing, and I'm going in for MRN at the end of this week.
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Old 04-08-2013, 11:52 AM #9
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Quote:
Originally Posted by fdupshoulders View Post
Thanks guys, here's a brief time table of my symptoms:

9/2011 - Slight discomfort in left shoulder blade region

8/2012 - Pain in left side neck

9/2012 - More pain in left shoulder blade and left side neck

11/2012 - More pain and mirrored symptoms developed right side neck and shoulder blade and front of neck

12/2012- Suprascapular nerve release left side (bad diagnosis, no effect)

4/2012 - Extreme pain both shoulder blades, both sides/front of neck

I have attached many of my reports and records so that you may review them.
Sorry about the "I have attached many of my reports and records so that you may review them." I took this from an e-mail that I sent to a doc recently.
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Old 04-08-2013, 12:17 PM #10
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EMG & MRI are usually neg for most TOS, but good that no other issues to confuse /complicate things.

Mild cubital could be showing due to "double crush" those sx may show due to higher up issues than elbow.

I didn't have high pain, but very limited use and moderate discomfort, due to multi RSIs and neck/shoulder strains.
It still took approx 2.5 yrs to get to a stable point. (some delay due to work comp & 2003 limited Internet info back then)

It did take many sessions of good PT, posture work, chiropractic and focused self care.
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