[Qwerky]

Hi, nothing dramatic here. I have a bad back and since my teens have had episodes of excruciating spasms that often envelope my entire torso. Feels like somebody injects gasoline into me and lights it.
Now realize its tos with pectoral pain syndrome, but thankfully it's never got to the point I've had to have it medically investigated (knock on wood lol). Twisting-putting a seatbelt on, even-can trigger the spasm. Seems to run in my family. I have scoliosis too, and degenerative disc disease, which was what I always blamed the spasms on, til I discovered the tos test and failed (to my surprise).
I'm wondering do these two syndromes always go hand in hand? I'm blessed I'm not overly affected with the pain, but when it hits, it's pretty bad for a good 20 mins or so. Least of my problems at the moment, but I thought I'd bring the pectoral pain thingy up, in case there's somebody else who this info might help. Lord knows it shocked me to have an explanation for all the episodes of debilitating pain. Entering middle age concerns me that I could actually have a heart attack and mistake if for tos or pps.

[dahlbaby]

I am new to this forum and am having trouble figuring out how it works, but here is my story. I am 38 and have been dealing with TOS since I was 16. I had an extra rib under my right collar bone and I had severe muscle loss in my hand, arm and neck. It was very difficult for the DRs to figure out what was wrong. Finally they found the rib, removed it and all was good for 10 years. In 2003 all the symptoms came back with a vengeance. After a year of trying to find the problem, we found that the rib had only been half removed from the first surgery. Now, again, 10 years later I am having all the same symptoms on the left side, mainly the pain and muscle loss, this all started after I was rear ended and my T-1 was herniated. Sadly, there is no extra rib so DRs aren't sure what to do. Good new though, I have an appt with DR Johansen in a month and a half. Praying he helps me. I am having one weird symptom that I didn't have with the other 2 TOS's and was wondering if anyone else has experienced it, I get a tingling sensation in my neck, goes down my arm and blotched of goosebumps appear. I have a pic of these bumps but I am not sure how to post pics, if we can.

[Akash]

Hi, this is my story I guess...or nightmare more like.
I am a male based out of India, around 36 years of age.

Around 6 years back, I was going through a rough patch & was tired & not thinking straight. Got on a bike with a rash acquaintance who said he'd drop me. I ended up face down having fallen off the bike (it was around 30-40 mph), on the left side & I had severe facial lacerations on the left side. Long story short, I ended up in the hospital and they sent me back after some basic work saying MRIs/spine x rays checked out ok. A few days later, I immediately developed chronic pain in my fingers/hands/tingling (left much worse than right) & my right trapezius/back/shoulder would seize up with terrible spasms in good posture.

Six years and many doctors later, I have been told its not a disc issue (I had a cervical disc bulge at C6-C7 and some doctors misdiagnosed my issue as spondylitis).

Now, a doctor has said my issues are TOS & has asked me to undergo myofascial therapy & put me on Neurontin.

Here, its next to impossible to get decent advice on this complex condition & I am hitting a brick wall each time I try to figure out possible approaches.

Work is computer heavy & very stressful (demanding timelines) - and I need to figure out how to actually live my life as versus ending in the miserable existence that I have had for the past six years.

I would really appreciate any pointers on how to proceed with further diagnosis - I would even be willing to travel to the United States for treatment or diagnosis. Is there anyway to tell which side my nerves are entrapped & what conservative options should I explore?

[Twacka]

First of all... I've been reading everyone's backrounds and injury histories and my heart goes out to you

I have suspicions and assumptions and a whole lot of symptoms that no one down under in Australia is willing or brave enough to diagnose.
In March 2010 during stock take (annual inventory) at my old job I pulled a box down onto my shoulder as it shifted nicely enough to make me assume I could carry it. I brought it down onto my right shoulder from a higher position and started going backwards down our safety ladder at work. My blood pressure was way up as my face was burning and I couldn't breathe and threw the box down as I got to the final step and just stared at it in shock. How can coloured pencils in little tins be so heavy? Both trapezii were burning co workers are looking at me with surprise, "you ok?" one said. "No" I respond. (This girl forgets she was even there when it came to work cover, in fact the managers didn't remember me even being there... but that's another story.)
So I have this injury and I lose the case to claim. No lawyer would back me as the outcome was too grey.

2010- In and out of 2 hospitals with (you'll have to interpret these symptoms into clinical symptom names because I'm told very little) Parathesia? Burning sensations from head to toe. Right shoulder had minimal function, couldn't lift the kettle to make tea I was so weak. They gave me morphine, anti-inflam, plus some sort of brain altering drug that made me sleepy (Endep). This was taken during the body-burning symptoms I'd get when I took out the laundry or if my head wasn't on my pillow right. Scary days and nights. I felt like a cracked egg. Pain came in waves, dozed off between waves.
2011-2013 - 2 MRIs were done and when I asked what my results were "Nothing is wrong with you." Wait... what? I can't feel my face and there is nothing wrong with me? The young men who weren't even the specialist but his understudies said " You are young (40) and we would have to cut open your throat and it would leave an ugly scar." If they can't tell me what it is then they need to refer me to someone who can! But no. They gave me more scripts to get more of the same drugs and asked me not to send in a complaint as they had enough already..... Luckily their senior specialist quit and walked straight out of doing a surgery. Good thing I didn't have him touch me.
Today I've got different symptoms. I found a new physio and doctor, I've given up on all the specialists.

Raynauds Phenomenon -My NEW GP gave me a script for Adefin 10 (half a pill in morning half at night and I've not seen Raynauds symptoms since I started taking it 2 weeks ago and my fingers have a normal rosey color again) It's a blood pressure medicine that allows capillaries to relax a bit.

TOS (semidiagnosed)- my right shoulder cuff? is ceased up and physio is working on neck strengthening so I stop shrugging up- I feel the flexion in my left pectoral but can't feel much on the right. My pulse drops when I look to the left or right. Physio diagnosed this, no doctor has bothered or knows how to check for it.
Random spasms in R triceps and something weird going on under scapula near ribs all muscle/nerve. Pain in the evenings when lounging, have to sit "anatomically" straight or I suffer.
I think all these are due to the lack of strength in my upper torso. I have a huge hard knot that has not moved since March 2010 that is pulling vertebrae C5/C6 out of alignment causing stenosis on the R side. I have degeneration there and osteophytes encroaching on the neural foramina at C4/C5 and C5/C6. Osteophytes probably have nothing to do with my injury, but if I did get a whiplash-like injury from this incident the rubbing of the joint can cause these to form. C5/C6 is common for whiplash, mine would have been a sideways version of this with the box heavily mashing down on the side of my neck.

With some of the posts I've read where someone has multiple issues all over the body I'd request your doctor to send you for a blood test checking your auto-immunity. One of those tests that get overlooked. Keep safe and keep looking for answers, get pushy.

[Kitt]

Welcome Twacka.

[Akash]

Welcome Twacka, hope you get better soon.

Can you contact Lyn Watson in Australia? She seems to be the "gold standard" in PT for shoulder & other rehab for TOS:

https://www.lynwatsonshoulderphysio....ractitioner=22

I have seen many folks referencing her papers/work & am trying to go for something similar myself.

In terms of pain management, there seems to be an Australian device that works on the basis of stimulation. I tried an American device (InterX, similar in concept and it worked for me). Please see if its safe & can work for your condition.

www.enar.com.au

Best of luck & keep us all informed.

[ramdas]

[FONT="Arial Black"]hi Akash,
I am from India based out of pune and suffering from tos. Could you please message me ** so that I can get some information about tos doctors in India

Thanks
Ramdas /FONT]

=Akash;1083419]Hi, this is my story I guess...or nightmare more like.
I am a male based out of India, around 36 years of age.

Around 6 years back, I was going through a rough patch & was tired & not thinking straight. Got on a bike with a rash acquaintance who said he'd drop me. I ended up face down having fallen off the bike (it was around 30-40 mph), on the left side & I had severe facial lacerations on the left side. Long story short, I ended up in the hospital and they sent me back after some basic work saying MRIs/spine x rays checked out ok. A few days later, I immediately developed chronic pain in my fingers/hands/tingling (left much worse than right) & my right trapezius/back/shoulder would seize up with terrible spasms in good posture.

Six years and many doctors later, I have been told its not a disc issue (I had a cervical disc bulge at C6-C7 and some doctors misdiagnosed my issue as spondylitis).

Now, a doctor has said my issues are TOS & has asked me to undergo myofascial therapy & put me on Neurontin.

Here, its next to impossible to get decent advice on this complex condition & I am hitting a brick wall each time I try to figure out possible approaches.

Work is computer heavy & very stressful (demanding timelines) - and I need to figure out how to actually live my life as versus ending in the miserable existence that I have had for the past six years.

I would really appreciate any pointers on how to proceed with further diagnosis - I would even be willing to travel to the United States for treatment or diagnosis. Is there anyway to tell which side my nerves are entrapped & what conservative options should I explore?

[16rhonda]

Originally Posted by dahlbaby

I am new to this forum and am having trouble figuring out how it works, but here is my story. I am 38 and have been dealing with TOS since I was 16. I had an extra rib under my right collar bone and I had severe muscle loss in my hand, arm and neck. It was very difficult for the DRs to figure out what was wrong. Finally they found the rib, removed it and all was good for 10 years. In 2003 all the symptoms came back with a vengeance. After a year of trying to find the problem, we found that the rib had only been half removed from the first surgery. Now, again, 10 years later I am having all the same symptoms on the left side, mainly the pain and muscle loss, this all started after I was rear ended and my T-1 was herniated. Sadly, there is no extra rib so DRs aren't sure what to do. Good new though, I have an appt with DR Johansen in a month and a half. Praying he helps me. I am having one weird symptom that I didn't have with the other 2 TOS's and was wondering if anyone else has experienced it, I get a tingling sensation in my neck, goes down my arm and blotched of goosebumps appear. I have a pic of these bumps but I am not sure how to post pics, if we can.

Hi, to posts ur pics u have to go into ur private messgs, then into ur pics. Where do u
live? My tos specialists does redos of complicated cases. Hes in Boston.
U probably need a 1st rib, scalenes, and BP neurolyis for complete decompression.
Just my guess. Get an experts opinion maybe 2 in your case.
Good Luck!

[ShaggyChic_1201]

Multiple right shoulder dislocations led to multiple shoulder surgeries. Eventually diagnosed with RSD and TOS. Had neurography that proved my TOS was real, then 10 hrs of neurosurgery to remove middle scalene, decompress an artery and repair 7 nerves.

Had 4 yrs of complete relief, but now the hardware in my shoulder has failed and no doctor is willing to see me. I call, but when they hear my history, they just turn me away. I guess they only want to see healthy patients where they can be sure of successful treatment.

[Kitt]

Welcome Shaggychic 1201.