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


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Old 12-31-2014, 04:12 PM #1
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Default What type of dr. diagnosis TOC?

Hello all,
Another member read through my symptoms and pointed out that I should check out this board. I read through several posts and it sure sounds like my story here.
I was diagnosed with small nerve fiber peripheral neuropathy, but most of my pain is in neck, traps, arms, shoulders, and hands. I used to lift heavy weights and work out hard before I started losing the ability to do over head and front raises. My planks and pushups were becoming difficult. I started having shooting pains from shoulders to hands and then one day I woke up and couldn't move my neck. Now forget about weights, I'm lucky if I can fold laundry. Ive been like this since the summer. I feel like I have a terrible injury that triggered the neuropathy all over my body. All docs have done neuro evaluations and blood work which come out pretty much normal. What type of doctor would know about TOC? I mentioned at a neuromuscular neurologist appt today, but he doubts it since my EMG is normal.
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Old 01-01-2015, 04:00 PM #2
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EMG is often negative w/TOS, unless the major nerves are being severely affected..

One test or a few tests will not prove or rule out TOS.
Usually it is when other causes are ruled out then TOS is more the culprit.

I suggest looking thru or TOS docs & PTs sticky thread, I wouldn't waste time & money going to MDs that are not fully up on the syndrome..

MDs & PTs
http://neurotalk.psychcentral.com/thread135.html

Trigger points can make for many referred pain symptoms so it is good to learn about those - and it might be a large part of your symptoms
http://neurotalk.psychcentral.com/thread125577.html


You can post your state or area for other dr suggestions.
some members stay with friends or relatives for a short time if they are closer to a good TOS dr location.


since you were very active & fit - And no actual injury happened to change things??

I would think it is accumulated injury issue. much like a chronic RSI.. and can be turned around to a more normal state with lots of rest & proper therapies..
If you go to a top TOS dr some will require PT sessions before considering surgery ,unless there is a glaring anomaly that shows up in imaging or testing..

If you aren't nervous about seeking expert chiropractic care?? --- I will say that I had the best results from a very good chiro he also did mixed PT /massage techniques and had a Low level laser & IF stim.. did top rib mobilization , adjust my wrist/elbow shoulder as needed, and he also did the c1 c2 adjusting..

.....and /or seek out a very advanced PT/body-worker type person..

If they ever make things worse or don't adjust to what you can tolerate then quit that place..and find a better one..

If you didn't have good form / body mechanics when lifting , that might be how the accumulated injury came about.

Hypertrophy of the muscles can be a cause too -if you got over sized - it crowds the nerves & blood flow thru the outlet..
so sometimes letting the muscle get back to a more normal size and with some flexibility work things may resolve, if that is the case..
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Old 01-01-2015, 08:05 PM #3
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TOS is a highly specialized area. You're likely to encounter a lot of resistance unless you go to a specialist, because there's a fair amount of controversy in medicine as well when it comes to what I fondly refer to as Thoracic Whatlet? Syndrome

The real "experts" tend to be vascular surgeons. But to put together a good treatment team, ideally you would have a neurologist, a pain management physician, a PCP, a PT and/or a chiropractor or bodyworker on board, all of whom are knowledgeable about the diagnosis and treatment of TOS. I don't see any reason not to consult a surgeon just for the diagnosis, even if surgery is the LAST thing on your mind (as it should be, imho! - unless your case is vascular and the options few ).

In addition to checking the 'Drs. and PTs' sticky thread, try entering your hometown (or closest big city) and state where prompted in the 'Search This Forum' function at the upper righthand portion of your screen, to see what pops up.

Prior threads and posts often will contain information about our healthcare providers which may not have made its way into the sticky thread, for whatever reason. All you need is one! They all tend to know each other, so you can get references to other TOS specialists as needed from there…

Good luck! I hope you don't have TOS, but am glad you've found us, in case you do. Let us know how you're doing, OK?

Alison
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Old 01-04-2015, 03:11 PM #4
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Quote:
Originally Posted by Jo*mar View Post
EMG is often negative w/TOS, unless the major nerves are being severely affected..

One test or a few tests will not prove or rule out TOS.
Usually it is when other causes are ruled out then TOS is more the culprit.

I suggest looking thru or TOS docs & PTs sticky thread, I wouldn't waste time & money going to MDs that are not fully up on the syndrome..

MDs & PTs
http://neurotalk.psychcentral.com/thread135.html

Trigger points can make for many referred pain symptoms so it is good to learn about those - and it might be a large part of your symptoms
http://neurotalk.psychcentral.com/thread125577.html


You can post your state or area for other dr suggestions.
some members stay with friends or relatives for a short time if they are closer to a good TOS dr location.


since you were very active & fit - And no actual injury happened to change things??

I would think it is accumulated injury issue. much like a chronic RSI.. and can be turned around to a more normal state with lots of rest & proper therapies..
If you go to a top TOS dr some will require PT sessions before considering surgery ,unless there is a glaring anomaly that shows up in imaging or testing..

If you aren't nervous about seeking expert chiropractic care?? --- I will say that I had the best results from a very good chiro he also did mixed PT /massage techniques and had a Low level laser & IF stim.. did top rib mobilization , adjust my wrist/elbow shoulder as needed, and he also did the c1 c2 adjusting..

.....and /or seek out a very advanced PT/body-worker type person..

If they ever make things worse or don't adjust to what you can tolerate then quit that place..and find a better one..

If you didn't have good form / body mechanics when lifting , that might be how the accumulated injury came about.

Hypertrophy of the muscles can be a cause too -if you got over sized - it crowds the nerves & blood flow thru the outlet..
so sometimes letting the muscle get back to a more normal size and with some flexibility work things may resolve, if that is the case..
Thanks Jomar,
This is great info! I have a chiropractor, but I am terrified to let him near my neck. He is a believer in cracking necks and I am not. I tried medical massage twice and it seemed to exacerbate my symptoms.
I have a high ANA and was diagnosed with small nerve fiber damage with autonomic problems as well, but the neurologist doesn't get why my neck and shoulders are like this.
I told him that it was my shoulders and neck that sent me to the emergency room. It wasn't until that horrific pain became so out of control that the nerve pain spread to my legs and feet. I had tingling in feet and numb spots on feet and legs at times, but it wasn't that big of a deal until the shoulder, arm, and neck thing manifested. No one can figure it out.
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Old 01-04-2015, 06:55 PM #5
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A vascular surgeon or a thoracic surgeon. Usually it is a vascular surgeon. But they also must be one that specializes in TOS. Finding a doctor is hard. Finding a good surgeon is even harder.

Check the sticky list of doctors and find one near where you live for starters. Where do you live?? Good luck!!
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Old 08-01-2019, 01:26 PM #6
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Quote:
Originally Posted by Jo*mar View Post
EMG is often negative w/TOS, unless the major nerves are being severely affected..

One test or a few tests will not prove or rule out TOS.
Usually it is when other causes are ruled out then TOS is more the culprit.

I suggest looking thru or TOS docs & PTs sticky thread, I wouldn't waste time & money going to MDs that are not fully up on the syndrome..

MDs & PTs


Trigger points can make for many referred pain symptoms so it is good to learn about those - and it might be a large part of your symptoms
neurotalk.psychcentral.com/thread125577.html[


You can post your state or area for other dr suggestions.
some members stay with friends or relatives for a short time if they are closer to a good TOS dr location.


since you were very active & fit - And no actual injury happened to change things??

I would think it is accumulated injury issue. much like a chronic RSI.. and can be turned around to a more normal state with lots of rest & proper therapies..
If you go to a top TOS dr some will require PT sessions before considering surgery ,unless there is a glaring anomaly that shows up in imaging or testing..

If you aren't nervous about seeking expert chiropractic care?? --- I will say that I had the best results from a very good chiro he also did mixed PT /massage techniques and had a Low level laser & IF stim.. did top rib mobilization , adjust my wrist/elbow shoulder as needed, and he also did the c1 c2 adjusting..

.....and /or seek out a very advanced PT/body-worker type person..

If they ever make things worse or don't adjust to what you can tolerate then quit that place..and find a better one..

If you didn't have good form / body mechanics when lifting , that might be how the accumulated injury came about.

Hypertrophy of the muscles can be a cause too -if you got over sized - it crowds the nerves & blood flow thru the outlet..
so sometimes letting the muscle get back to a more normal size and with some flexibility work things may resolve, if that is the case..
Hi, I have read 21 pages under TOS and everytime there is a URL / reference to a thread it just taken me to a main page. How do I find threads you are referencing in this post?
Sorry, I had to remove links. Since I am new it won't let me post w urls.
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Old 08-01-2019, 07:06 PM #7
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Some links could be outdated if on very old posts..

If you report the posts with those broken links , we can try to fix /update them if possible..
Report Icon is in lower left corner of posts.

If you are looking for the useful sticky threads -
The easiest way to find them is on the main TOS forum page.
There is a section above the discussion threads with a green circle & arrow icon.. those are the sticky threads..
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Old 08-08-2019, 03:09 PM #8
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Quote:
Originally Posted by Jo*mar View Post
EMG is often negative w/TOS, unless the major nerves are being severely affected..

One test or a few tests will not prove or rule out TOS.
Usually it is when other causes are ruled out then TOS is more the culprit.

I suggest looking thru or TOS docs & PTs sticky thread, I wouldn't waste time & money going to MDs that are not fully up on the syndrome..

MDs & PTs


Trigger points can make for many referred pain symptoms so it is good to learn about those - and it might be a large part of your symptoms



You can post your state or area for other dr suggestions.
some members stay with friends or relatives for a short time if they are closer to a good TOS dr location.


since you were very active & fit - And no actual injury happened to change things??

I would think it is accumulated injury issue. much like a chronic RSI.. and can be turned around to a more normal state with lots of rest & proper therapies..
If you go to a top TOS dr some will require PT sessions before considering surgery ,unless there is a glaring anomaly that shows up in imaging or testing..

If you aren't nervous about seeking expert chiropractic care?? --- I will say that I had the best results from a very good chiro he also did mixed PT /massage techniques and had a Low level laser & IF stim.. did top rib mobilization , adjust my wrist/elbow shoulder as needed, and he also did the c1 c2 adjusting..

.....and /or seek out a very advanced PT/body-worker type person..

If they ever make things worse or don't adjust to what you can tolerate then quit that place..and find a better one..

If you didn't have good form / body mechanics when lifting , that might be how the accumulated injury came about.

Hypertrophy of the muscles can be a cause too -if you got over sized - it crowds the nerves & blood flow thru the outlet..
so sometimes letting the muscle get back to a more normal size and with some flexibility work things may resolve, if that is the case..
Hi, Which body part do you recommend the laser treatment for? I have multi-wave locked system technology laser available locally. How many sessions? Can pick only one body part at the time.
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Old 08-09-2019, 01:20 PM #9
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My chiro mainly used laser when I had specific pain areas in my joints, but can be used in many areas..
he used the IFc stim & ultrasound for overall tx of upper & lower back muscles.. I got both for home use off Amazon under 100 each.
Worth it to have easy access pain relief at home..
Both are over 14 yrs old and still work fine.. used them a lot at first..
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