Update-5 years later...
 

Interesting to read that I wrote my kids resections were a success. Five years later, my daughters resected rib has totally grown back and symptoms have returned. My son and daughter are both limited in their employment choices due to lifting/repetitive movement restrictions. I had resection almost 5 yr ago with returning symptoms within a year, breast reduction for neck/head/back/arm pain, symptoms improved for only months with return of pain. I continue to juggle life and do what I can to minimize pain and flareups. I also continue to seek answers to my pain issues, as do both my grown children.

Young TOS
 

My symptoms started three years ago when I was 20 years old. I had horrible shoulder pain and instant headaches from pressure on the many knots in my shoulder. When I turn my head I instantly get dizzy and feel like I'm in a daze most of the time. Due to school I had to carry a lot of heavy bags, but it got to the point where after wearing even a very light purse I would get a frantic overly tired feeling in my shoulders and arms and would have to sit down to relax my shoulders. I recently saw my doctor for my shoulder pain and had xrays and venous ultrasound. With my arms at 90+ degrees I had no blood flow to both arms. The believe I am having muscle spasms/knots/tightness in my shoulder from the lack of oxygen to the muscles.

Dr. Lum at John's Hopkins wants to do a rib resection and scalene muscle snip. Currently doing physical therapy to help get rid of the MANY knots in my shoulders to help with that pain which seems to trigger everyday headaches and frequent migraines. Both arms are swollen, left shoulder/arm a lot worse than right. My case is a little more complicated since I have a blood clotting disorder so they are watching me closely. Unable to carry anything on my shoulders, or carry heavy bags in my hands.

Does this sound like TOS?
 

I have no diagnosis because my symptoms are not specifcally pain. The more I use my hands or stand or walk the more my back tightens up.

I have to sleep with my arms bent in front of me or I wake up with tight/torn muscles in my back or glutes.

I tried holding my arm out straight and moving my fingers back and a nerve pulled under my arm, it was then uncomfortable to use the arm for about 2 weeks

I wake up with my ring and little finger numb on either hand

My shoulder blades will spasm or my lats muscle will tighten seemingly depending on the position of my arms.

I am being treated for terrible head forward shoulder forward posture, but no diagnosis.

Tos with pectoral pain syndrome
 

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. :(

3rd time with TOS
 

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, 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?

Slow Progress in Australia
 

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

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.

Welcome Twacka. :Wave-Hello:

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.

Ouch
 

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. :confused:

Welcome Shaggychic 1201. :Wave-Hello:

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

finally diagnosed with bilateral N+A Tos is S.E England
 

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

Helllo, new here but have had TOS a while now!
 

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!!

re : your tos history
 

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!

Diagnosed with Neuro TOS need info about surgery and recovery!
 

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

Welcome Linschmid3. :Wave-Hello:

My TOS Story so far...
 

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:winky:

Welcome Teeners. :Wave-Hello:

ex bilateral tos
 

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.

Hello!

My name is Emily, I'm 20 years old and I was diagnosed with thoracic outlet syndrome this August. I have been suffering from TOS for about five years now. Before my diagnosis with TOS, I was incorrectly diagnosed with ulnar nerve entrapment and underwent an unsuccessful surgery for that. My doctors and I believe my TOS started from a cheerleading accident I had when I was 15 where I broke my elbow.

It's been an emotional roller coaster ever since I discovered my official diagnosis. After seeing a few doctors, it was apparent that TOS described my symptoms. Although I was skeptical at first, I agreed to have surgery December 22nd. I had a first rib resection and a pec minor release. The doctor said he could tell my nerve and artery were EXTREMELY compressed and there is no doubt in his mind that I will make a quick and successful recovery. Currently I'm three days post-op and I'm feeling amazing. I pretty much have full range of motion already and haven't had any TOS related pain (some pain that had to do with surgery but I was expecting something much worse)

Anyway I'm very happy to have had the surgery so far and thankful that after so many years, I finally have an answer!

Welcome Emmyb453. :Wave-Hello:

Heeey.
Stumbled across this board during one of my many online scavenger hunts trying to find some help or relief.
Kind of nice, although unfortunate, to see so many other people with 'zombie arms' rather than just feeling like an insane person. Forgive the lack of short version, as frustration forces me to rant.

About 2 years ago I was kayaking and tried to save my boat from being sucked under a tree by some rapids by sinking my paddle in the shore. I didn't feel any pain or ripping, I was pretty geared up, but I apparently dislocated my shoulder or injured a nerve. When I got back to the truck hours later I couldn't control the fingers on my hand to tie my shoes.
I slowly regained some control, but still had a crazy numb hand. I'm a jeweler and an artist, and this kind of ground work down to a crawl. My shoulder was also rolled forward and no amount of shoving could get it to rest on a table. About 7 months in I received a steroid injection in my shoulder, which allowed it to clunk back in to place and helped some numbness, but it turned out the numbness was covering searing pain.
Since then my scapula started severely winging (it looks like it wants to take off like a rocket from my back), my shoulder collapsing, and the worse it got the worse my nerve symptoms became. I lost the strength and use of my right arm and hand, the pain spread in to my neck and back, and I started to have trouble controlling the muscles allowing my chest to expand. My arm started to move on it's own as things got worse and would flop around so much it woke me up at night. My shoulders pop out of joint just trying to lift a can of soup. I've gone from free climbing and weight lifting to spending all day in bed, and vacuuming is a task that sends me to the floor.

8 months ago I finally could not limp it any more or care for myself so I left my home, fought to get insurance, and started seeking treatment. I've seen 29 doctors now (only 9 of which have actually looked at my shoulder) and am caught in an endless loop of specialists deciding I'm not their problem. The shoulder doctor doesn't do scapulas, the spine doctor doesn't do shoulders, the thoracic doctor doesn't do nerves. Round and round.

I've no official diagnoses, as no one has taken me on as their patient long enough to treat or do work up, but working diagnoses are SICK scapula, neurogenic thoracic outlet, brachial plexus compression, and a possible long thoracic nerve stretch injury.
It's been an infuriating ride.
Most doctors have only seen winged scapula or thoracic outlet in a text book, and are baffled as to why my loose scapula falling into my brachial plexus could give me symptoms like brachial plexus nerve compression. MYSTERIOUS!!

I look forward to talking with some other people who are familiar with the medical joy ride, and hearing your insight and suggestion on how not to feel like I'm going to die all the time.
Thanks!!

Bilateral thoracic outlet syndrome (tos)
 

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.

Theraputty
 

Yoga can be dangerous! The TOS was probably present the whole time, but doing downward dog will definitely irritate it. You can use Theraputty to help with the wrist pain, but if it gets bad enough, then surgery may be called for. Hope you are doing better.

Frank
Cleveland, OH

intro
 

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.

Recently diagnosed with TOS
 

Hey everyone, I was so happy when I found this online community! I've had neck/back/shoulder/hand issues off and on for the last 20+ years. I had my first bad pain episode when I was 12, and got sent off for the standard routine most of us seem to get sent through - PT, postural reeducation, nothing useful. Started having disabling episodes of back pain in college, and episodes where I couldn't use my right (dominant) hand for much of anything around then too.
No progress until about 4 years ago when one of the GP dr's at my clinic suggested maybe we should get a simple x-ray of my spine. He found I have cervical ribs on both sides, and said, well there's your problem. It took me another 4 years, many episodes of PT, 4-5 different specialists, 2 cervical epidurals that did nothing, and 4 MRIs, to find a good dr who listened to me and agreed with me that I have TOS. The main person that pushed me to keep trying to get an accurate diagnosis was my PTs, Lisa and Dan, who have been awesome and were treating me (with all the correct treatments, rib manipulation, nerve therapy, and very gentle stretching) for TOS even though my prescription from my original dr said it was just a degenerated disc.
sx: Pain in my neck, upper traps; numbness on both sides, heaviness and weakness when I use my R arm, pain in my R hand, and random shooting nerve pain that comes and goes. Chronic low level pain. Loads of occipital headaches. I have bilateral NTOS, possibly some mild venous or arterial compression too.
I'm working with Dr. Gelabert at UCLA, and so far he's been amazing. Given my looooong term history with this, the ridiculous size of my cervical ribs, and the multiple treatments I've already tried, I'm probably headed toward surgery this summer.

Paget-Schroetter Syndrome --> First Rib Resection
 

I'm a 39 year old male. I gave my self Paget-Schroetter Syndrome from weight lifting. Last summer (6/26/2014) I threw a clot down my subclavian vein. After months of testing, research, and waiting, I found specialists who could diagnosis the problem.

I had a first rib resection last week (5/5/2015) with Dr. Donahue. It went very well, far, far better than I expected. I went off prescription pain meds in less than a week (5/11/2015) and stopped taking Tylenol yesterday (5/13/2015). I am virtually pain free and have full range of motion. I'm now waiting for a venogram and angioplasty.

-------------------------------------------
Here's a timeline with some resources that I found helpful.

Spring 2014
I increased the frequency of overhead movements. I started doing overhead presses twice a week. I was also doing pull ups, chin ups, downward dog, handstands, and supermans frequently.

6/26/14
My right arm started swelling mid day. It felt like I had just done some high rep curls. It turned a little purple, so I went to an urgent care clinic. I thought it might be a bee sting, though I've never been allergic to bees. I guess I put the bee sting idea into the doctor's head. She gave me Prednisone. This certainly didn't help.

6/27/14
In the morning the swelling had gone down, so I went for a run. At 3 miles my arm was huge. The 3 miles home were very uncomfortable. The swelling got worse. I went back to the urgent care clinic mid afternoon. They immediately referred me to the ER. They said that I had compartment syndrome and might loose the arm!

At the ER they didn't know what to make of things. At first they thought I had a biceps tendon tear. I thought it might be due to an injury I incurred that week doing dips. . . .

Eventually they did an ultrasound and found the clot. They put me on blood thinners and told me to see my PCP. The resident said that this was the kind of thing they see in volleyball players, but he didn't seem to know about Paget-Schroetter.

(I know now that they should have performed Thrombolysis and done a venogram. Thrombolysis is the current recommend standard of care for cases like this, **

6/28/14
I saw my PCP. He emphatically said that this couldn't be due to an injury and that I would have to stay on blood thinners for the rest of my life if it happened again. He referred me to a hematologist for further testing. (I fired this PCP as soon as I could get another.)

7/?/2014
I started doing some research. I thought that this had to be related to weight lifting in some way. I found a helpful thread** A doctor participating on the forum mentioned decompression surgery in the thread. That got me looking into things.

Initially, the most helpful article I found was "Upper-Extremity Deep Vein Thrombosis" by Goldhaber: **

7/10/2014
I saw the hematologist. She ran a battery of tests and detected a lump in my testicle. I brought the Goldhaber article and some other stuff. She listened and ordered a vanilla chest and neck CT scan to see if there were any obvious problems.

7/?/2014
I had an ultrasound to see if the lump was a tumor. It turned out to just be a cyst.

The ultrasound revealed nothing unusual. Since it was arms down, this isn't surprising. The radiologist didn't think that they could see compression with the clot in place. (It turns out that he was wrong.)

7/?/2014
I saw an orthopedic surgeon. I thought he'd know something about Thoracic Outlet Syndrome. I even brought the blog post and the Goldhaber article just in case. The orthopedist dismissed the idea since I was pain free. I guess he didn't know that there are vascular forms of TOS. Good grief.

7/?/2014
After having read through a bunch of the literature, I saw that the effectiveness of thrombolysis diminishes greatly after two weeks and that the long term outcomes for conservative therapy (anti-coagulation and elevation) were bad, I made a hasty appointment with an interventional radiologist.

The IR thought that I had Paget-Schroetter. He did the Adson test and a few others. My pulse is obliterated when my arms are raised.

He recommended against thrombolysis though. He said that it was too risky and that everyone he knows has seen things go very wrong during the procedure. (At this point, I really don't know what to make of this.) I think he was excessively conservative, though nice. He didn't even think that I should be running until I was off the Warfarin. ???

He recommended that I simply wait and see if I would have another clot.

At this point, I knew that I would need to find a specialist. So I tried to make an appointment with someone in Goldhaber's group. I made an appointment about a month out to see Dr. Piazza at B&W.

8/1/2014
I finally got in to see Dr. Piazza. He ran a huge battery of tests an ordered an MRI with my arms in a provocative position. Finally!

The MRI took about 45 minutes. My hands went numb. They did imagining with my arms up and down.

Piazza called me on Saturday with the results: Thoracic Outlet Syndrome on both side. He immediately referred me to Dr. Donahue at MGH for decompression surgery. Piazza said that he had seen excellent results in his referred patients.

8/3/2014
I started working out again, avoiding any overhead movements.

11/5ish/2014
I had a CT scan in preparation for my appointment with Dr. Donahue.

11/17/2014
I finally got in to see DR. Donahue. I was worried about the delay at first, but I'm so happy I waited. He went over the options and recommended a first rib resection to avoid damaging the vein further and to head off possible nerve damage. He was booked until late February, but that wouldn't fit my schedule. So I had to wait until May.

11/17/2014 - 5/5/2015
This was a long wait. I became obsessed with the surgery. Some of the horror stories on this forum scared me more than anything. That's the main reason I'm posting now.

To prepare, I tried to gain weight and increase my strength. I went from a body weight of 191 lbs. in July after the clot to 220 by March. At the time of surgery I weighed 217. I was stronger than I've been in my entire life. As part of my routine, I did a ton of inverted rows, 3 times every two weeks. Otherwise, I did a Starting Strength linear progression.

5/5/2015
I had a first-rib resection at MGH. It went great. Dr Donahue's team is fantastic. They even called my wife mid surgery to let her know that things were going well. MGH was excellent and the Thoracic unit is great.

The surgery took about 3 hours. I was out of recovery in less than two hours. I woke up pain free. They gave me toradol, an excellent anti-inflammatory that lasts for about 6 hours. It tastes like nail polish remover when you breath it out.

I was hooked up to a morphine drip that I could control with a button. It did nothing but make me nauseous. So I stopped pressing the button. The next day, I started on a low dose of Oxycodone and Tylenol. I only took 5mgs of Oxycodone every three hours.

The pain on the second and third days was worse, but mild. I've had far worse pain from post exercise muscle soreness.

5/7/2015
On Thursday, the drain had stopped filling and I was discharged from the hospital with a prescription for Oxycodone and a set of simple exercise to perform three times a day.

5/11/2015
I stopped taking the Oxycode.

5/13/2015
I stopped taking Tylenol regularly.

I'm now waiting to schedule a venogram and angioplasty.

-------------------------------

I wish I could have found Dr. Donahue sooner. If I had known who to talk to, I would have been able to get in earlier and have had the surgery during the winter break.

In any case, I'm very happy with the results so far. We'll see what the venogram shows in a few weeks. They expect the vein to be very damaged.

I'll chalk my speedy recovery up to the skill of Dr. Donahue and his team. I'm not sure how much my strength training contributed.

It's been a week and two days and I'm now down from 217 to 209. I expect to drop another 10 pounds in muscle, as I can't workout for some time. . . .

bumping up for newest members

TOS, etc.
 

No official diagnosis, but a specialist said I likely have TOS, on top of a small mountain of other chronic problems in my arms, upper back, and neck. Some of my symptoms fit with what I have read about TOS in various books on repetitive strain injury. I first started developing repetitive strain injury problems in 2003, but they did not become seriously debilitating until 2012.

need help in India
 

[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]

Cervical Ribs/Cervical Headaches
 

Hi there!!!

I'm new on here, and just wanted to reach out to anyone else that has Spare Cervical Ribs in their necks. I have Bilateral ones. I recently had a Specialist tell me I'm most likely suffering from Cervical Headaches as well. My range of motion is not hindered at all, so injections are not needed. Although, Physical Therapy just isn't affordable , and really a Chiropractor isn't either. (Even with insurance) My Dr. has tried me on a couple different things, that hasn't worked out for one reason or another so I'm in pain EVERY DAY!!!!!

This has all been a very recent diagnosis to me. And a lot of web sites use technical mumble jumble that's hard to understand!!! I would appreciate any help, or advise from anyone!!!

Thank you!!!!

From Eastern Europe with love
 

Hi there...everybody
This is a short history just as my story with TOS is starting....
I'm a 31 y.o. anesthesiologist from Romania...
First symptoms were paresthesias in my last two fingers 7 years ago while studying for an exam....went away in 3 days...
During my residence in Belgium 4 years ago had excruciating pain with vascular symptoms in my left hand while on call...Vascular surgeon on call told me the vascular signs were just a reaction to pain...3 weekes later couldn't intubate by myself so had to take 2 days off and went for emergency MRI of my cervical spine which showed "just a swan neck due to many years of ballet"... all symptoms went away after deciding eventually to take some tetrazepam (I was afraid to take it lest I wouldn't wake up in the morning)...
All good until a month and half ago when at the end of a night shift I felt the same familiar pain with intense cyanosis of my left hand...
Went immediately to the vascular operating room and the professor there told me, after feeling for my pulse...it must be TOS.
Had angio-Cat scan...normal. 2 MRI s- cervical spine and brachial plexus....normal, no cervical rib...
I'm in pain everyday...and can do my job only with extreme pain...
I already can do no on-calls anymore...
when I found this forum, I bevame really depressed...I couldn't stand losing my job as I ve worked really hard to get here and although the pay is horrible the satisfaction makes up for it ... also , taking away pain seems to be my mission in life ;)
Until now, what I've seen is that:
-pain meds don't help (me, at least)
-psychiatric meds only sink you deeper...
I don't even dream about having surgery without abnormality on any scans...
I am trying qigong, some (probably crap) russian osteopath, and physio by myself as PTs here have no clue about what this is...
I'll keep you posted but I am determined to be totally functional again...sooon:)
Take care everybody,
Maria

Possible TOS
 

af carpal tunnel release in September, since then I have been having neck issues. Went to my family Doc and saw his PA, she sent me fir xrays and gave me muscle relaxers. Nothing found on xray. During final follow up for cts release surgeon sent me to PT for my neck. The PT guy says TOS. Went back to primary and he ordered MRI cause at this point I can hardly move neck and muscles spasming, with pain and tingling in left arm to hand. Primary thinks cervical. Different PT guy also says TOS. Went for MRI today and now am waiting.

Welcome new members.:grouphug:

Law76

I am a 21 year old guy and I actually got diagnosed with TOS (they called it Paget Schroder Syndrome) and was diagnosed with a blood clot in my subclavian vein three days after my 21st birthday. My right arm became purple and extremely veiny for two straight days so I knew something was wrong. I spent roughly 10 days in the hospital due to how busy the hospital was.

On the third day in the hospital, they attempted an angioplasty going through my bicep, but did not have any luck because my top rib was pushing up on the vein so tightly. Two days later I had the rib removed. Two days after that I had another angioplasty in which they "believed" they expanded the vein and they fixed the problem (i'll get more into that in a little). I was sent home three days later and was put on blood thinners for a month

After my one month check up, my doctor took me off the blood thinners and told me to carry on with my normal activities. Low and behold, 8 days later I had the swelling and numb feeling in my arm again! I went to the doctor the next day, they took an ultrasound and found that the vein collapsed on itself. My doctor did not give a clear cut reason of why it happened but he believes it was because they did not go deep enough on their previous angioplasty. So the next day I had another angioplasty (my third one) and I was sent home the following day. They prescribed me lovenox for 3 months (which sucked).

It is now 7 months later and I am 100% fully healed from all of it and off blood thinners.

You should feel pretty honored, TOS is not very common so embrace it!! It's one hell of a story to tell people.

July 2014: Had a nasty accident/fall that resulted in a broken nose, fractured teeth, a small fracture of my hard palate, concussion/post-concussion syndrome (diagnosed) and a bruised swollen hand.

Late November/Early December 2014: First noticed problems with left side of neck, clavicle/shoulder. Could see a visible jugular pulse when looking in mirror and vein would become slightly distended when in certain positions. Discomfort, pressure, fullness and some pain in side of neck.

March/April 2015: Arm involvement noticed. Felt like pressure and heaviness in left arm with some shooting type pains going down the length of the affected arm. Veins sometimes distended on arm. Also notice a pulsating mass just above collar bone/ in scalene triangle.

November/December 2015: Left side symptoms start to calm down and hardly bother me at all. Start getting headaches mostly on the right side of my head (occipital/parietal and behind and around right eye).

February 2016: At this point I finally relent and go and see a doctor. I'm admitted to hospital due to blood pressure on right arm being 180/100 and because of current symptoms (headaches are virtually daily and some vision problems like blurring/ghosting/sublte doubling, and weird blotches, sparks, flashes etc).

I'm given a CT of my head which is normal and referred to ophthalmology to see an eye specialist who tells me I have developed a squint and the vessels behind my left eye are prominent and the blood flow to that eye appears strained. I'm prescribed ramipril for hypertension (BP when seeing the specialist was 159/88).

Currently dealing with throat discomfort and discomfort on the right side of my neck/shoulder/clavicle area. There is some arm involvement...My right hand gets noticeably cool at times and I have the familiar pressure/heaviness at times. Also experiencing some lightheaded/dizzy spells at times. No syncope/near syncope.

I cannot lie supine for any extended periods of time. Its just too uncomfortable. I'm much more aware of the pulsations in the right side of my neck.

Concerning me most at the moment is the fact that I have cold feet most of the time. I don't see this adding up as being a symptom of TOS...? It makes me worry that something more serious is happening.

In a nutshell, this is horrible and I need some answers. I don't even know if this is TOS...:confused::confused::confused::confused:

Hello and Welcome Shrug-Dealer, :Wave-Hello:

I am sorry you are dealing with so much discomfort and uncertainty.

Have you had any sort of PT consult or chiropractic?

Cold hands and feet are common side effects of many blood pressure medications in case that started after your BP meds.

Search and FAQ are found at the top of every page to help look for specific topics and answer common forum usage questions.

I hope you get relief and answers soon.

I have my mri tomorrow morning. It probably will come back normal, i don't feel as though this is a problem with my brain per se, still holding out hope that SOMETHING will show up to at least shed a little bit of light on the matter.

I also have an ophthalmology follow up on monday.

Embrace it are you crazy? How many people haven't recovered as well as you or not at all? Im at the point I might lose my job, which I worked dam hard to get and have nothing to fall back on, not counting the $1000's spent on physios and chiros. I wouldn't wish TOS on anyone.