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


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Old 11-30-2014, 08:35 PM #1
Daesin Daesin is offline
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Default Intro, questions about ntos

Hello, 42yr female with L side ntos. As per the usual it has taken a while to figure this out. I have bounced from this Dr to that and been told along the way that I was crazy, malingering and trying to get out of work. Sound familiar? When I fell I possibly dislocated my shoulder and definitely broke my wrist. I was given ibuprofen and told to ace wrap my wrist for work the next morning. I worked for 3 months in a physical job without appropriate treatment for my injuries. Fun, fun.

Since then, I have met drs who say its tendonitis, a sprain, residual swelling, and needs to be replaced due to arthritis. I have MRIs that show three partial tears of the rotator cuff, arthritis, impingement, spurs, and abnormal fluid. I also have MRIs that show a class 2 acromion and an otherwise normal shoulder. Go figure? Never once have I asked for oral pain meds. Though the shoulder replacement guy had several narcotic scripts written before he walked in the door. BIG RED FLAG!!! I want o know what's wring before we start medication.

I have had the current ortho specialist since July. He is the shoulder guy for the local NBA/hockey team. After several wrong guesses at a DX, he told me that he just didn't know what to do with me and was simply going to send me to pain management. This was just not acceptable to me. I just don't see the point in continuing to mop up the kitchen floor if the pipes are leaking....so,

Being the patient mild mannered delicate woman which I am not, I flat out threw a kaniption fit. I actually blocked the door until he looked at my neck/collarbone. Why does this stick out like this why does it hurt all of the time? why cant I feel my fingers? (We went fingertip to skull with every spot and area that acts up.) And don't ever mention a negative emg again. I AM NOT A TEST RESULT! Yeah, it went pretty well.

He did look at my neck and i was able to show him movement issues that didn't make sense. I put a safety pin through my thumb to get his attention. It worked. He became interested then and asked me what my pain level was after the (unneeded MUA) scalene block. I told him that was the best 8 hours since the accident. You could almost see a light pop on in his head. Yep, it all finally made sense to him. All of these weird things I have going on. He figures I have ntos, left ulnar needs transposition at the elbow and the superficial branch of the radius is toasted. So, even though my emg came back negative I have obvious nerve involvement. I am now headed to neuro. Not sure what to expect there but at least we are making some progress. It has been a long terrible ride.

I was warned by pt that since they have already been treating me for tos (and arguing with the drs over a dx) there really isn't much more they can do for me. I have been there since April. I work on Trigger points, have a tens and an extensive HEP. I would love input from you guys on how effective the non surgical and surgery treatment went.

As I am a federal employee, my wc is through the dept. of labor. DoL will need to retrain me as I can't resume my position as Post master. The muscle wasting in my hand is not reversible. I wont ever be able to handle 70lb packages again. I cant even hold a water bottle without pain or dropping it.

I have been seeing a therapist due to anxiety and depression, I am sure you can understand the mental battles I have faced, and will face. I don't share my issues with my family or husband any more than I have to. Although hubby is a good man he isn't a very good comforter and currently has his own medical issues. Thankfully all of the kids are up and grown. So I really appreciate being able to ask questions and vent. This is such a weird situation. I feel like Alice in the Twilight Zone.

So, in conclusion my basic questions are:
If you could change your participation in surgical treatment would you?
Did anything about treatment and recovery surprise you?
Does anyone else get headaches from the base of the skull and around into their face? Or did I just get lucky?
Does/did anyone else have regimental badge numbness?

Well, anyhow, thanks for the ear bending. I hope you all have a restful night.
Daesin
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Old 11-30-2014, 09:24 PM #2
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For starters read thru our sticky threads at top of main TOS page if you haven't found them yet.

There is a syndrome called double /triple crush.. where there is TOS plus elbow and/or wrist symptoms. Sometimes much of it can come from the entrapped nerves in the neck/brac areas... cubital /carpal tunnel surgery may not be needed.. treat the TOS first..
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Old 11-30-2014, 10:54 PM #3
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Try getting botox shots in the anterior and middle scalenes and doing PT for tos with shots every three months for a year. If that doesn't fix you, then get the best surgeon you can.

WC will read your posts here and use it against you, btw.
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Old 12-01-2014, 12:55 AM #4
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Yes , good thinking Eight.
with a WC claim don't mention any specific dates or names or times of injury , location etc..
Also with your employer, be extra careful of any identifying information.. In fact no need to mention who employer is .
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Old 12-02-2014, 10:21 PM #5
Linschmid3 Linschmid3 is offline
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Default Do your homework in finding the right doctors

I was seeing a neurologist but felt he wasn't qualified and knew enough about TOS. A lot of Vascukar doctors/surgeons usually know abit more. I would recommend a vascular surgeon if you have to go the surgery route, who specializes in TOS, do your homework when it comes to your doctors I had surgery a week ago with NTOS any questions don't hesitate if you don't want the replies on the board you can private message

Good luck

Lindsey
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Old 12-06-2014, 04:25 PM #6
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" if you don't want the replies on the board you can private message "

Lindsey,
I hope you are recovering well. It was kind of you to offer your experience but, well honestly I am having a terrible time figuring out how to do a pvt message. I have read the faq multiple times but my brain is not connecting. Sadly this is a regular thing. I didn't use to be stupid.

Some weird things:
Does anyone get headaches that wrap into their forehead and cheek from the base of the neck?
I have numb spots in my upper arm and chest wall that do not blanch when pressed or turn red after exposure to very hot water. They don't hurt but are disconcerting.
I am learning that if I don't raise my arm above shoulder height some of the pain eases after a few days. But wont that invite a frozen shoulder?

I am really lost and very flustered. I am so very tired of not having the ability to function as a human being. Today I dropped my favorite coffee cup. My hand just said no and I watched the Eiffel Tower shatter on the floor. I know this is a small event but its an example of how far I have dropped.

I read up on the double/triple crush and find it very familiar. The resources are helpful as well.

I hope everyone is able to enjoy their weekend and a wonderful holiday season.
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Old 12-06-2014, 05:21 PM #7
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The PM option is not available to new members , after a few more posts those options will open up.

If you move your shoulder/arms other ways /directions frozen shoulder shouldn't be an issue.


[Does anyone get headaches that wrap into their forehead and cheek from the base of the neck?]
Trigger point info - might be related to the headache
http://neurotalk.psychcentral.com/thread125577.html
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Old 12-06-2014, 05:31 PM #8
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Welcome Daesin.
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Old 12-06-2014, 07:36 PM #9
Daesin Daesin is offline
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Quote:
Originally Posted by Jo*mar View Post
The PM option is not available to new members , after a few more posts those options will open up.
Aha! well that makes me feel much better. Thank you...though I am experiencing mental fogs. Wish I could blame it on meds.

PT has not been able to find any active trigger points in my neck. I have a theracane and use it religiously as well as a sock full of balls to erase them. If I move my head the wrong way I get a firebolt that races through my neck and shoulder. It is then that the headache happens which will last a while.
I know, don't move my head that way...;-)
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Old 12-06-2014, 07:57 PM #10
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Quote:
Originally Posted by Daesin View Post
Does anyone get headaches that wrap into their forehead and cheek from the base of the neck?
I do. Had them for 20+ years. They probably have something to do with TOS, but I am not positive.
Paikillers make them worse so I just live with them.

Quote:
Originally Posted by Daesin View Post
I am learning that if I don't raise my arm above shoulder height some of the pain eases after a few days. But wont that invite a frozen shoulder?
Same here. I kept myself from raising my arms for about a month now and my pain level is way down. I am wondering about the frozen shoulder too, but don't know what I can do.

Quote:
Originally Posted by Daesin View Post
I am really lost and very flustered. I am so very tired of not having the ability to function as a human being. Today I dropped my favorite coffee cup. My hand just said no and I watched the Eiffel Tower shatter on the floor. I know this is a small event but its an example of how far I have dropped.
Yes, this is so frustrating.
I shattered a glass full of water a couple weeks ago.
Things tend to fall out of hands without any warning.

I can't answer your questions on surgery. I am still undiagnosed.
My new neuro called me the other day: "Good news! EMG not find anything wrong. You must just have tight muscles". Wanted to kill her
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