[Kitt]

Welcome Shaggychic 1201.

[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

[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

[aTOSer]

Hello All,

I was diagnosed with bilateral TOS in 2009, after a cumulative trauma (repetitive strain) injury chronic from bad ergonomics at a bad job that I had for 8 plus years.

I had surgery on ONLY the right side (I am R hand dominant and it was worse on the R side) in 2010. Had paralysis afterwards of my R arm, gradually recovered somewhat so I can get by. Adjusted and changed my lifestyle and kissed certain sports good bye (Tennis, golf, surfing, dancing with my arms above my head, etc).

I had all kinds of pain management afterwards and got a spinal cord stimulator. Weaned off of fentanyl, went back on fentanyl, weaning back off of fentanyl. Now that my dose of opiates is lower, I feel so much more Left sided pain and symptoms.

I cannot lie on my Left side when in bed, cannot lift my left arm without SHARP stabbing pain, can't even remove a sweater or coat without SHARP stabbing left shoulder area pain, it is getting worse with throbbing and more and more ciscomfort around the neck, etc.

Unfortunately I have WC for insurance as this was a work-developed injury and they keep refusing me to see the TOS/thoracic surgeon again.

I am afraid I am going to get a blood clot one day and die! I have gotten used to the pain on the R side so that I think I can get back to work at something. But the Left sided pain is SO SHARP and constant I think I need surgery on it now. Not sure what to do how to handle WC, I am in California and their WC system is terrible/evil.

Any advice or suggestions appreciated!!

[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!

[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.

[laura75]

Hi all,
My name is Laura, I found this forum a few months ago and just read odd bits and pieces. I saw that someone commented that once people are cured they don't come back so that's why I'm posting now.
I was diagnosed with TOS in June 2011 when I developed a blood clot and went blue down one side. After many test and deliberations by doctors they decided that TOS was the issue. This was on my left side. I had a thrombolisis op to flush out the clot them the following day I had a first rib resection, my first rib is an unusual shape and also had an extra chunk of bone. Growing on it that was crushing my vein and nerve without the removal of it a new clot would form within weeks or I risked loosing my arm further down the line if the condition remained untreated. On being discharged I was told I also has TOS on my right side but due to the risks involved with surgery they wouldn't remove the rib as a precaution. For the first 12/18 months I was fine. I then began to develop pins and needles and pain in my forearm, over the last few months drving , writing on whiteboards, combing my hair anything that involved raising my arm even a little bit has bought on the symptoms. My case was discussed by a board of doctors who decided that the pinch in my shoulder was severe and really the rib needed to come out. I did consider just living with the condition as the risk of paralysis to my arm freaked me out, I lead a very active life style and loosing that would kill me, but the pain had gotten unbearable. I had my op on 18/12/14 I'm a few days post op and I can honestly say I feel like a new person. I've suffered with this since November 2010 and now other than the post op pain it's all gone. I'm a new me. I owe my fantastic surgeon my life. Thus us the best Christmas present I've ever had.