[antikamars]

New to the board. Due to have surgery on the 10th with Dr. Akers in Knoxville. After almost 3 years in search of diagnosis (doctors though was fibromyalgia related) my wonderful husband put the pieces together for my symptoms and other tests that I have had and everything started falling in to place from there. Have my own Dr House.

[Jomar]

Originally Posted by Jo*mar

Hello & welcome,

Please copy/paste your post from here, or make a new thread on the main TOS section.
Sometimes we don't notice new members that only post in this thread.

And it works best to carry on conversations on the main TOS forum section.

here is the main TOS section -
http://neurotalk.psychcentral.com/forum24.html


New members can make a new threadfor themselves here-
http://neurotalk.psychcentral.com/ne...newthread&f=24

Bump up for new members

[vthomas]

I have bilateral TOS... no idea how I got it just started 2 years ago I am 24. Literally just confirmed diagnosis today. I have just about every neuro symptom and alot of the vascular symptom so I want to get my doctor to distinguish between them.

[SaskFellow]

I came to see if I could find some help to point me in the right direction to find a surgeon who can deal with my TOS.

My google-fu led me here, since I can't seem to find anything else that's relevant.

[mytea]

Hello everyone with TOS and those with a loved one with TOS. My symptoms started in January of 2012. First my whole hand went numb and tingly, then my wrist was very tight and painful, that pain soon traveled up my forearm and into my shoulder and neck. This happened over the period of a month. Does this sound familiar to anyone?? At this point my left arm feels heavy and cold, but my neck is affected with the worst pain and only on the left side. My shoulder blade also hurts quite a bit!! I have a high pain tolerance, but some days I would rather cut the arm off and get on with life (at least that is what I tell myself...)

I have had soooooooo many tests I cannot count them all. I have had 2 EMG's the first of which I dismissed...the second one reported absent bilateral antebrachial cutaneous sensory nerve response, but was otherwise within normal limits. Does that mean anything to anyone?? I have had chest x-rays and cervical spine x-rays all of which report normal rib structure (sometimes I wonder if these films should be evaluated by a trained eye as things are easily overlooked when not looked for).

I have been doing yoga sporadically and am stretching daily. I am also trying to watch the forward posturing of my neck and shoulders. Some days are worse than others, but I do believe that I will get this resolved. I really really do not want to do surgery, but I will if I am left with this constant daily pain and no real relief.

That is the short version of my story. Please give feedback!

Thanks

[romans8]

I joined this very helpful forum a month ago. I am a 54 year old male. I had a whiplash injury 30 years ago and fought chronic neck pain for tha next 20 years. In 2000 my problems were misdiagnosed as cervical spine so had C67 fusion. The next 10 years carried worsening symptoms and additional surgeries including c56 fusion, labrum tear, shoulder decompression and even a reattachment of detached rhomboid muscles. None of these altered the scapular pain and neck pain all on the right side. I finally quit working in 2011 and went on disability. Symptoms worsened this year and I was finally diagnosed TOS when I found a competent doctor who did a scalene block. That was in May 2012. All problems have been on my right side until the last 4 months. My left side developed symptoms very rapidly and now I cannot raise my left arm above my shoulder.

I am seeing Dr. Pearl in Dallas Oct. 15. Hopefully I will have surgery very soon thereafter because my condition has gotten very severe and I have suffered far too long. I am sure they finally have the correct diagnosis but I am afraid the longevity and severity of my condition may limit what surgery can do. I stay on my knees every day and I am trying to hang on. Hopefully I will have good news to report at some point. My heart goes out to everyone suffering with this. I know there are varying degrees of it but it feels life threatening for me. It has passed way beyond what I can bear.

[Joshuamr]

Hey new to the forum and seeking advice/help. I was in a bad car accident in April 2011 and was hospitalized for 3 days with a contusion of the left hip and was unable to walk for a couple weeks. Severe lower back/neck pain right away. Mri X &xray of back negative. Doc said prob soft tissue damage offered cortisone shots which i declined. Few months later started getting a dull ache in right shoulder which I ignored for months until it became more severe. Shoulder started to feel numb/pressure constantly. Arm started feeling weak. Started getting pain in my shoulder blade area. Then finally my hand started locking up on me. When grasping or moving my arm certain ways my fingers (middle and index mostly, but sometimes ring and thumb) lock in a downward position and remain like that until I relax my arm then it kind of releases and I can slowly open them. I have had an mri of neck which revealed a herniation at c5-6 level and a budging disc at c6-7 level. The Neuro said it wasn't effecting the nerves though and wasn't the cause. Had an Emg done which revealed ulnar nerve entrapment at elbow only....which controls the fingers that I am not having a problem with leaving me further confused. I just recentely had a regular MRI of the brachial plexus but got a phone call from the nurse yesterday saying it was negative. Waiting to go back to the Neuro in a week. Read up on TOS and found that lots of people had negative mri's and emg's with TOS and similar symptoms as myself. Was gonna ask my Nero about possible TOS....just wondering if anyone had similar problems/pain and difficulty getting a diagnosis. I have been getting NO sleep lately waking up with this pain/pressure in shoulder and shoulder blade region. Also feels like pressure in chest at times. Sooooo tired of it and not knowing what's wrong...hand symptoms getting worse and praying for an answer. Sorry for the lengthy post, seeing similar stories gave me some hope for a possible answer to my pain.

[mytea]

Definitely sounds like you should bring this up to your neurologist at your next visit. I too have had 'normal' MRI's (2),EMG's (2), spinal tap, viral testing etc. You name it, I was tested for it and it was all negative. I cannot say I am not thankful, but this pain is REAL and we all need to find a solution. Side bar- Be your own advocate. If one doctor does not believe you, take you seriously or shrugs you off, find another one. After all, it is your money you have to spend! Sorry for the rant, just my $.02. I do know that herniations do not always cause problems, but you may want to get a second opinion about the herniations in your neck being the cause of your symptoms. If the herniations are truly ruled out TOS would not be a long shot for you in my book! I am no physician, just my input...Welcome to the show I am new also...

Originally Posted by Joshuamr

Hey new to the forum and seeking advice/help. I was in a bad car accident in April 2011 and was hospitalized for 3 days with a contusion of the left hip and was unable to walk for a couple weeks. Severe lower back/neck pain right away. Mri X &xray of back negative. Doc said prob soft tissue damage offered cortisone shots which i declined. Few months later started getting a dull ache in right shoulder which I ignored for months until it became more severe. Shoulder started to feel numb/pressure constantly. Arm started feeling weak. Started getting pain in my shoulder blade area. Then finally my hand started locking up on me. When grasping or moving my arm certain ways my fingers (middle and index mostly, but sometimes ring and thumb) lock in a downward position and remain like that until I relax my arm then it kind of releases and I can slowly open them. I have had an mri of neck which revealed a herniation at c5-6 level and a budging disc at c6-7 level. The Neuro said it wasn't effecting the nerves though and wasn't the cause. Had an Emg done which revealed ulnar nerve entrapment at elbow only....which controls the fingers that I am not having a problem with leaving me further confused. I just recentely had a regular MRI of the brachial plexus but got a phone call from the nurse yesterday saying it was negative. Waiting to go back to the Neuro in a week. Read up on TOS and found that lots of people had negative mri's and emg's with TOS and similar symptoms as myself. Was gonna ask my Nero about possible TOS....just wondering if anyone had similar problems/pain and difficulty getting a diagnosis. I have been getting NO sleep lately waking up with this pain/pressure in shoulder and shoulder blade region. Also feels like pressure in chest at times. Sooooo tired of it and not knowing what's wrong...hand symptoms getting worse and praying for an answer. Sorry for the lengthy post, seeing similar stories gave me some hope for a possible answer to my pain.

[Joshuamr]

Originally Posted by mytea

Definitely sounds like you should bring this up to your neurologist at your next visit. I too have had 'normal' MRI's (2),EMG's (2), spinal tap, viral testing etc. You name it, I was tested for it and it was all negative. I cannot say I am not thankful, but this pain is REAL and we all need to find a solution. Side bar- Be your own advocate. If one doctor does not believe you, take you seriously or shrugs you off, find another one. After all, it is your money you have to spend! Sorry for the rant, just my $.02. I do know that herniations do not always cause problems, but you may want to get a second opinion about the herniations in your neck being the cause of your symptoms. If the herniations are truly ruled out TOS would not be a long shot for you in my book! I am no physician, just my input...Welcome to the show I am new also...

Yeah def will bring it up next visit.....thanks for the advice. It's so frustrating hoping for an answer after each test and finding another dead end, but I guess we just have to keep moving on until we figure it out. So i guess i can look foward to that spinal tap next! lol. Going in a week to the Neuro so ill keep my fingers crossed. Good luck to you, I know now how living with chronic pain is. (NOT FUN)

[mytea]

Spinal tap next lol That one was funny! For your sake, I hope that your doctor does not go that direction. Good luck next week with your Neurologist! Thank you for the well wishes and chronic pain is definitely a damper. We will prevail, just might take some time to get there

Originally Posted by Joshuamr

Yeah def will bring it up next visit.....thanks for the advice. It's so frustrating hoping for an answer after each test and finding another dead end, but I guess we just have to keep moving on until we figure it out. So i guess i can look foward to that spinal tap next! lol. Going in a week to the Neuro so ill keep my fingers crossed. Good luck to you, I know now how living with chronic pain is. (NOT FUN)