I post on another thread, but have Tos also though has not been quite so bad. Since I had my tonscils out it seemed to make some space call me crazy but it did. I was wondering, I get head pain top of my head like a pole going through it to my cheeck. A pain doctor told me it sounded like TOS pains? I also have trigeminal neuralgia and Chronic sinusitis. Does that pain sound like TOS to anyone? I do have issues with my left side as EMG supposedly showed. Only real issues are dropping things and wierd pain in pointer finger and neck. The head pain is really what concerns me though. Thanks , Jen

I get sore spots on my scalp that come and go as my flares/tightness come and go.
I know some would get really bad headaches and one -she just re joined recently Starla - she would have very bad face pains if I remember right.

in our stickys there are some good anatomy links in post #1 {long list scroll down to find the anatomy section} maybe you could track down the nerve or muscles that could be causing the trouble.

when the head pain is the worst - are you feeling tight in your neck or upper back muscles?

I am mostly having a tight neck. When I turn it from side to side I can usually trigger the pain. Thanks, Jen

Hi, Jen! Welcome to the TOS board! I see you're in Aurora...I live in Weld County. Small world!

Have you ever had your neck looked at? I have TOS, and also had a fusion done a few months ago on my neck for disc problems. I notice the TOS-related neck pain is more in the scalene area on the side of my neck, whereas the neck pain before my surgery was all the way across the back, with some really bad headaches that worked the way up into the back of my head. I did have a lot of stiffness in my neck before my surgery...not as much now, but sometimes on the left side it still stiffens up some. I don't remember ever having the type of head pain you are describing, though.

FWIW, I do have numbness in the left side of my face; started the same time as the TOS symptoms and hand numbness, but I've had a couple of docs mention that they didn't think it was from the TOS. They said that would be from cranial nerves, not the brachial plexus. I wonder about that, though...neither of those docs were my regular doctors, and none of the others ever told me that.

I would be curious to see if others have any facial symptoms...I know when I had the interscalene (brachial plexus) block, my left eye drooped and face was even more numb than usual. I do get twitching in that eye when my arm is really flared.

I hope you find some answers, and relief for your head pain!

Take care,
Donna

Twice now when mt PT has worked on my shoulder/neck area, really moving it around, I have had numb face afterwards, only on the side she worked on. It has only lasted a day both times, but clearly there is something there to be aggravated.

Since, I am really concerned about all these pains, I'd like to go have it looked at. Now what kind of doc do I see? I have a neurologist who dx the tos, and I recently had a xray of my neck. It showed nothing. Do I see a PT, a chiropracter, a doc or what? When I looked at the muscles effected in my head and neck pain the SCM pattern seems to work for me so now I am really confused. I have noticed though that since I started doing some neck stretches my head pain has diminished. Thanks, Jen

Oh Jenn,
You live in the capiitol of TOS specialists, maybe one of these could call it as Tos or turn you in the direction of somebody who could help you... from just what you said it could be a many thins... Fibromyalgia, Herniated Disc W/ cord compression or even the ugly beast that brought you over to our little family! However you came to the right place most members here can tell you alot more than I, I just live with a plethora of oddysies! Hang in there and stay tuned... wishing you my best !!!

MARK-n-GOOBER

Hi there! I just thought I would offer my two cents and let you know what I've been told.....

I do have major face (nerve type) pain and headaches.

My headaches sometimes are more like sore spots on top of the head to the "pole" type to full blown migraines. They have been better since I started taking Topamax for nerve pain and migraines though.

My face pain usually starts as a dull toothache like pain and then gets gradually gets to burning, stabbing, horrible pain that goes anywhere from just below the temple to the lower corner of my nose. Mostly the jaw area. This pain comes and goes with the condition of my neck and traps. I have also noticed in the colder climate that the tip of my nose goes numb and then like pins and needles....I know....it's wierd.

Another wierd thing I have noticed is that my lymphnodes are ALWAYS swollen when any of this happens too.

My neuro who dx'ed the bilateral TOS asked me if this usually occurs on both sides at the same time or if it sticks to one side at a time. (Mine is on 1 side or the other, never both at the same time) He said that it probably was Tos. He also asked if my eye on the same side got really bloodshot. I didn't know at the time but have noticed since then that it does. When he gave me my scalene block, I was having a really bad time with it and the block took it away completly, for the day.... (I also had my neck looked at and besides having a reversed curve, I have no disc problems) Again, I think the Topamax has helped with this too. Also heat or ice will help depending on the day for me.

OH and someone had postd a pic of trigger spots in the back, (maybe someone still has this) If I have someone press on the right one, it's right on the inside of my shoulder blade and about 3" down from the shoulder, it goes away temperarally.

For a while I thought it might be a tooth problem but I have had all the problem teeth dealt with now and still am left with this pain.

My W/C ortho told me it was probably Trimengial Neuralgia. No tests, no other questions....

Hopefully this helps a little. Mine can get really horrible and I hate to hear that anyone else is dealing with this. If you have any other ??? I will try to help out, this is all I could remember at this point. LOL!

Wishing you a painfree day,
Shannon

quote
[Do I see a PT, a chiropracter, a doc or what? When I looked at the muscles effected in my head and neck pain the SCM pattern seems to work for me so now I am really confused. I have noticed though that since I started doing some neck stretches my head pain has diminished. Thanks, Jen]

jen - I am partial to expert chiros and advanced PT persons.
they are "hands on" and really did help for me.

especially since you mention some stretching is helping
some triggerpoint sites/info-
Triggerpoints and referred pain and stretching:
http://www.triggerpointbook.com/index.html
http://triggerpoints.net/_sgg/m1m1_1.htm
http://www.pressurepointer.com/pain_reference_chart.htm
http://altmedicine.about.com/library...ressure+points
http://www.drlowe.com./triggerpoint.htm
http://www.erikdalton.com/articleduramater.htm
http://deeptissue.com/learn/learn.htm
Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html