[Emmyb453]

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!

[Kitt]

Welcome Emmyb453.

[SnappleofDiscord]

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!!

[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.

[jobby99]

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

Originally Posted by johannakat

Hi, I just found this board. Well, actually I found the ressurected old brain talk board and then stumbled onto this one.

I have just had a TOS diagnosis, I had an arm injury doing yoga- watch out for poses where you put all your weight on your wrists!!! and after a few rounds of PT and a nerve conduction test, was diagnosed with TOS first in June, and confirmed just a week ago. I am seeing Dr. Sheldon Jordan in Santa Monica, CA. He does a Botox procedure to relax the muscles that constrict, as well as an ultrasound procedure to do the actual diagnosis....anyone else know of or work with him before?

I had a right scalene nerve block about 1.5 weeks ago...was not forewarned about how much it was going to HURT...yikes. But I am starting to feel better. Just trying to gather as much information as I can to make sure (with the docs help) I get on the proper treatment path.


Glad to have found this place, I am a little confused about the two forums, but I guess everyone is over here now?

Nice to meet you all,
Johanna

[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.

[bethanyr32]

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.

[Smuts]

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. . . .

[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

[JNT2014]

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.