[Jomar]

Welcome new members.

Please make a thread for yourself on our main TOS section so all can say hello there.

You can copy your post from here ,so no need to retype it all again..

Main TOS page
http://neurotalk.psychcentral.com/forum24.html

Make a new TOS thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

[Jomar]

bumping up for newest members

Originally Posted by Jo*mar

Welcome new members.

Please make a thread for yourself on our main TOS section so all can say hello and for ongoing discussions.

You can copy your post from here ,so no need to retype it all again..

Main TOS page
http://neurotalk.psychcentral.com/forum24.html

Make a new TOS thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

[Jomar]

Originally Posted by Jo*mar

Please make a thread for yourself on our main TOS section so all can say hello there.
You can copy your post from here ,so no need to retype it all again..

Main TOS page
http://neurotalk.psychcentral.com/forum24.html

Make a new TOS thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

Welcome new members.

[richsch]

Hi, my names Richard and after four years of countless scans, many different so called "experts" at many different hospitals I finally have a diagnosis of bilateral arterial and neurogenic TOS, and boy has it improved my mood! I was seen at three London hospitals, kings college hospital, st Thomas, and the royal London hospital, all to no avail, then I got a letter from a Mr rix, a vascular surgeon at the buckland hospital in Dover, I have far too many symptoms to list but it all started with a felling I was having a heart attack, chest pain moving up to the throat, getting light headed spreading down arms and a pain down the left arm, first doctor I saw wasn't very understanding so I had to change doctors to get things moving, so if you think you have Tos, don't give up, even when your told by some of the country's best surgeons that " you can't possibly have Tos, it's far to rare", KEEP ON FIGHTING!!! **.....thanks for reading....Rich

[Linschmid3]

I'm a 29yr old female that was recently diagnosed with neurogenic TOS after suffering 6 years going to doctor after doctor and specialists,. My symptoms got worse the last few years and recently in July. Symptoms were severe shoulder and neck pain on the right side, numbness and tingling in arm hands and fingers, discoloration and swelling in fingers, unable to lift heavy items or lift my right arm all the way above my head, lose my radial pulse when arm is above head. After all the years and numbers of tests done, MRIs, X-rays, CTs, EMGs , dopplers, ultrasounds, nerve studies every single test came back normal.

Anyone who has gone through this know it's tough but don't get discouraged even though tests came back normal. I was told by a few that I need a shrink and that it was all in my head, but deep down inside and my gut feeling I knew something was wrong. I felt a sigh of relief when The doctor I saw told me the news and looking forward to a better less painful life.

My surgery is scheduled for November 25th just under 3 weeks away. My vascular surgeons name is Dr. Enrique Criado who is through the Uniiversity of Michigan and is told he is the best in the state of Michigan for TOS cases. I've never had surgery before abit scared about it. I was told they will be doing a first rib resection with neurolysis and scalenectomy. I understand what is gonna happen with the surgery I'm wondering how the recovery is and what the first week is like. Any info helps thank you .... Lindsey

[Kitt]

Welcome Linschmid3.

[Teeners]

Hi! I am Teeners, a 30 year old female

I was in a car accident around 2001 and was left with back pain. Insurance sent me to a Chiropractor. During the start of one of these visits, he used a machine to stimulate my left shoulder muscles so it would relax. Unfortunately, it was on too high for too long and it gave me a spasm. The spasm lasted for more than 3 days and I finally went to a GP. They gave me pain meds, muscle relaxers, and told me not to go back to Chiropractor.

I would have what this spasm repeat a couple times a year for over a decade. No big deal, the pain meds and muscle relaxers worked great every time. These spasms made my left arm and hand weak and I would lose feeling. Then in 2013 I got another one, only this spasm wouldn't go away. Then came all the tests...

I was in a lot of pain and nothing seemed to help. I was missing a lot of work and my GP didn't feel qualified to handle my pain so I started seeing a pain management dr.

I was finally diagnosed in 2014 in by Dr. Sanders (love him) with Neuro TOS and pectoral minor on my left side. We have tried PT, but it didn't help, I was however back to work full time and able to function with the pain med regime I was on. We decided to not do surgery at that point.

Now, my pain has increased and I really want to try and lessen the amount of narcotics I take. My husband just wants us to try something. I am scheduled for surgery on 2/26/15

Sorry that was so long... Eek

[Kitt]

Welcome Teeners.

[jobby99]

Hi,

I am a 33 year old male with a history of neuropathy, mostly on the right side of my body (hint hint...it must be something physical). I am above average physically, playing sports for 30 years until symptoms got really bad. I suffer the most in winter with terrible Fibromyalgia and migraines. Another clue, the nervous system hates the cold it would seem. After about ten years of the same symptoms worsening with time and going to 100 different doctors and 5/6 surgeries to just treat the symptoms, I finally found a peripheral neuropathic specialist who diagnosed me with neurogenic TOS. The symptoms include weakness in 4th and 5th digits of both hands. I get lightheaded and lose all blood flow to hands when raised above head for about a minute. In addition, I suffer chest pain (pseudo angina), wrist pain, excessively sweaty hands/pits, migraines (caused by nerve irritation) a few hours after reaching/lifting stuff. The worst of the worst is BEING COLD ALL THE TIME! I may actually move to a warmer state just because of TOS!

If you are still reading, congratulations for having a long attention span. I have no social life, limited job possibilities, lots of psychological trauma, and have been alienated from many people due to my condition. I've had it from a young age, I would guess age 5 or 6. If the medical community was more aware, a simple two-minute (EAST) test could be performed by all neurologists that would greatly help in diagnosing this disorder. Unfortunately, many neuros do not believe in this condition and will not treat it. Even at prestigious clinics, such as Cleveland Clinic, many doctors are unaware of its symptoms or existence, even neurologists. Your mileage may vary with different doctors, so do not give up! Pain programs will help, but pain will get worse over time. The pills can only do so much without knowing the true cause of the pain. My hope is one day, each patient will have enough time and resources to start making their own educated diagnoses and be able to find competent doctors to confirm or reject a diagnosis. "Differential Diagnosis" is a term that will become much more popular in the coming years and offer great value to both patients and physicians with complicated disorders and wide ranging symptoms. Thank you for reading this long intro! I hope for the best for your personal situations. It will take both skill and luck on your part to find the best treatment options.

See PubMed for relevant journal articles related to TOS.

[jheumann]

New to this diagnosis, not new to this pain. I am very interested in alternative emerging therapies, such as prp. Prp or stem cells have been shown to change scar tissue in the heart to actual heart muscle tissue. I am very interested in finding someone would like to try to convert my scar tissue and the brachial plexus non scar tissue. what is non scar tissue that is the question.