New to the board. Due to have surgery on the 10th with Dr. Akers in Knoxville. After almost 3 years in search of diagnosis (doctors though was fibromyalgia related) my wonderful husband put the pieces together for my symptoms and other tests that I have had and everything started falling in to place from there. Have my own Dr House.

Bump up for new members

Tory
 

I have bilateral TOS... no idea how I got it just started 2 years ago I am 24. Literally just confirmed diagnosis today. I have just about every neuro symptom and alot of the vascular symptom so I want to get my doctor to distinguish between them.

I came to see if I could find some help to point me in the right direction to find a surgeon who can deal with my TOS.

My google-fu led me here, since I can't seem to find anything else that's relevant.

Hello!
 

Hello everyone with TOS and those with a loved one with TOS. My symptoms started in January of 2012. First my whole hand went numb and tingly, then my wrist was very tight and painful, that pain soon traveled up my forearm and into my shoulder and neck. This happened over the period of a month. Does this sound familiar to anyone??:confused: At this point my left arm feels heavy and cold, but my neck is affected with the worst pain and only on the left side. My shoulder blade also hurts quite a bit!! I have a high pain tolerance, but some days I would rather cut the arm off and get on with life (at least that is what I tell myself...):hissyfit:

I have had soooooooo many tests I cannot count them all. I have had 2 EMG's the first of which I dismissed...the second one reported absent bilateral antebrachial cutaneous sensory nerve response, but was otherwise within normal limits. Does that mean anything to anyone?? I have had chest x-rays and cervical spine x-rays all of which report normal rib structure (sometimes I wonder if these films should be evaluated by a trained eye as things are easily overlooked when not looked for).

I have been doing yoga sporadically and am stretching daily. I am also trying to watch the forward posturing of my neck and shoulders. Some days are worse than others:mad:, but I do believe that I will get this resolved. I really really do not want to do surgery, but I will if I am left with this constant daily pain and no real relief.

That is the short version of my story. Please give feedback!

Thanks

I joined this very helpful forum a month ago. I am a 54 year old male. I had a whiplash injury 30 years ago and fought chronic neck pain for tha next 20 years. In 2000 my problems were misdiagnosed as cervical spine so had C67 fusion. The next 10 years carried worsening symptoms and additional surgeries including c56 fusion, labrum tear, shoulder decompression and even a reattachment of detached rhomboid muscles. None of these altered the scapular pain and neck pain all on the right side. I finally quit working in 2011 and went on disability. Symptoms worsened this year and I was finally diagnosed TOS when I found a competent doctor who did a scalene block. That was in May 2012. All problems have been on my right side until the last 4 months. My left side developed symptoms very rapidly and now I cannot raise my left arm above my shoulder.

I am seeing Dr. Pearl in Dallas Oct. 15. Hopefully I will have surgery very soon thereafter because my condition has gotten very severe and I have suffered far too long. I am sure they finally have the correct diagnosis but I am afraid the longevity and severity of my condition may limit what surgery can do. I stay on my knees every day and I am trying to hang on. Hopefully I will have good news to report at some point. My heart goes out to everyone suffering with this. I know there are varying degrees of it but it feels life threatening for me. It has passed way beyond what I can bear.

New here
 

Hey new to the forum and seeking advice/help. I was in a bad car accident in April 2011 and was hospitalized for 3 days with a contusion of the left hip and was unable to walk for a couple weeks. Severe lower back/neck pain right away. Mri X &xray of back negative. Doc said prob soft tissue damage offered cortisone shots which i declined. Few months later started getting a dull ache in right shoulder which I ignored for months until it became more severe. Shoulder started to feel numb/pressure constantly. Arm started feeling weak. Started getting pain in my shoulder blade area. Then finally my hand started locking up on me. When grasping or moving my arm certain ways my fingers (middle and index mostly, but sometimes ring and thumb) lock in a downward position and remain like that until I relax my arm then it kind of releases and I can slowly open them. I have had an mri of neck which revealed a herniation at c5-6 level and a budging disc at c6-7 level. The Neuro said it wasn't effecting the nerves though and wasn't the cause. Had an Emg done which revealed ulnar nerve entrapment at elbow only....which controls the fingers that I am not having a problem with leaving me further confused. I just recentely had a regular MRI of the brachial plexus but got a phone call from the nurse yesterday saying it was negative. Waiting to go back to the Neuro in a week. Read up on TOS and found that lots of people had negative mri's and emg's with TOS and similar symptoms as myself. Was gonna ask my Nero about possible TOS....just wondering if anyone had similar problems/pain and difficulty getting a diagnosis. I have been getting NO sleep lately waking up with this pain/pressure in shoulder and shoulder blade region. Also feels like pressure in chest at times. Sooooo tired of it and not knowing what's wrong...hand symptoms getting worse and praying for an answer. Sorry for the lengthy post, seeing similar stories gave me some hope for a possible answer to my pain.

Welcome
 

Definitely sounds like you should bring this up to your neurologist at your next visit. I too have had 'normal' MRI's (2),EMG's (2), spinal tap, viral testing etc. You name it, I was tested for it and it was all negative. I cannot say I am not thankful, but this pain is REAL and we all need to find a solution. Side bar- Be your own advocate. If one doctor does not believe you, take you seriously or shrugs you off, find another one. After all, it is your money you have to spend! Sorry for the rant, just my $.02. I do know that herniations do not always cause problems, but you may want to get a second opinion about the herniations in your neck being the cause of your symptoms. If the herniations are truly ruled out TOS would not be a long shot for you in my book! I am no physician, just my input...Welcome to the show:) I am new also...

Yeah def will bring it up next visit.....thanks for the advice. It's so frustrating hoping for an answer after each test and finding another dead end, but I guess we just have to keep moving on until we figure it out. So i guess i can look foward to that spinal tap next! lol. Going in a week to the Neuro so ill keep my fingers crossed. Good luck to you, I know now how living with chronic pain is. (NOT FUN)

Spinal tap next lol:p That one was funny! For your sake, I hope that your doctor does not go that direction. Good luck next week with your Neurologist! Thank you for the well wishes and chronic pain is definitely a damper. We will prevail, just might take some time to get there

Thin female with 8 yr history of computer workstation use at a fast paced job. Non-ergonomic workstation. Pain began with severe onset of pain in trapezius mm, levator scapulae mm area, Right side, then left side. Pain then "spread" to bilateral forearms with severe muscle/tendonitis, radial tunnel. Suffered and continued to work full time for 6 months because I did not have sick time off/employee benefits...until I became disabled. Had physical therapy with 4 different p.t.'s, had diagnostic exams which were all confirmatory for TOS (with vascular component). Finally saved up enough to have the surgery for TOS on one side. Am still disabled by pain and symptoms today, am now fighting with WC (which was obtained after a trial determined I was an employee) to obtain SCS for pain management.

Am really frustrated with battling WC for medical care and benefits! Worker's Comp is evil and responsible for prolonging my suffering and causing more injury to me.

Hi my name is Bridget. It took ten years for doctors to figure out what was wrong, but than again I do live in Montana. I was diagnosed with bilateral TOS. I had my first surgery Dec 12, 2012. My doc is going to hold off on the left since it is not as symptomatic as my right side was. My recovery has gone extremely well one month post op and I am playing volleyball. It felt so good since I haven't been able to play for quiet sometime. My arm used to go completely numb and my shoulder would hurt for months after a big episode. Wen they removed the rib the found that I had a bigger rib than normal. The only post op thing that has happened is that I have nerve pain, but my doc thinks that since my nerves where compressed for so long that it will take a little bit more time for them to heal and get back to full function. Anyone else experience the nerve pain issue.

Hello & welcome,

Please copy/paste your post from here, or make a new thread on the main TOS section.
Sometimes we don't notice new members that only post in this thread.

It works best to have our conversations in the main TOS threads section.

here is the main TOS section -
http://neurotalk.psychcentral.com/forum24.html


New members please make a new thread for yourself here -
http://neurotalk.psychcentral.com/ne...newthread&f=24

I still don't understand what is wrong with me, how or why it happened, and why nothing has really helped. I just want to get out of pain and back to a normal life. Before the accident I had forearm pain. Then, I had a minor rear-end car accident a little over 2 years ago, upon which I think I had whiplash...I think I had a muscle spasm in my neck and trigger point ache in my upper shoulder blade. I immediately went to a chiropractor because I didn't want this to turn into anything major. I would feel better after he cracked my neck. I do work at a computer and am stressed out all day long. By the end of a workday, I would be in agony. Over time, this new pain became unbearable, but at least the forearm pain mainly went away. I had 6 months of chiropractor and physical therapy in the first year that helped me make it through the day, but my symptoms got progressively worse. That was followed by 6 months of mainly massage therapy, with tens and ultrasound but I kept getting worse. I brought up TOS to my doctor, but he told me that was very rare and unlikely, and shot me down. Finally I felt like my doctor was taking me seriously when was told I had a herniated disk. I thought that was the answer and had ACDF C4-6 about a year after the accident which relieved the pinching in my neck, but I think worsened all the brachial plexus problems. After that, I developed a deep aching pain my my shoulder and a tender spot on the nerves and muscles in the front of my neck. Also, the nails of my thumb and first two fingertips turn blue throughout the day, and these fingers are constantly numb (although I still have feeling - it's a hard sensation to explain). I had shoulder arthoscoscopy a year and a half after the accident to shave a bone and clean out the bursitis, which got rid of one spot of pain under my armpit, but gave me other aches and pain. Then I researched some more on the internet, went to see a vascular surgeon, and was diagnosed with Thoracic Outlet Syndrome because my hand went white in a few seconds after lifting it, and my vascular ultrasound showed compression. I had a first rib resection and scalenectomy 4 months ago, which got rid of the worst aching pain I had in the grove between by tricep and deltoid. However, this left me with tons of inflamation, scar tissue, adhesions, new aches and tender spots, and I crack every time I move. I can flick the nerve in my arms like guitar strings, and a nerve and or muscle keeps getting caught and sending shock waves down my arm. I had more physical therapy which has done nothing except help me make it through the day and get a little stronger. A month after the TOS surgery, out of the blue I couldn't lift my arm and was told that I had axillary nerve dysfunction and that my deltoid wasn't working properly. Most function has come back, although nowhere near normal, but I was told that my other muscles are compensating. My medicine (Lyrica, Tizanidine, Nabumetone, Tramadol) just takes the edge off the ache, but if I don't take it, I'm in agony. I still work full time (primary breadwinner), and am a wife and mother of a young child. I don't know how I make it thought the day, other than I have no choice, because if I don't go to work and bring home a paycheck, I lose everything, and I would still be in pain. Being a woman in my thirties, I think people think I'm a hypochondriac because they can't see anything physically wrong with me. It's not like I have cancer or am dying from a serious disease. I think my husband thinks its all in my head and I just need to stop thinking about being in pain and just deal with it. I don't know what to do or how to handle this anymore. Does anyone see a pain management psychiatrist? And is there anything left I can do? If there is anything else I can do or a doctor I can see who can fix me, I'm not ready to give up yet. At the same time, the auto insurance just cut me off and I don't have enough money to pay for my co-pays for medication, pt and doctor appts. without putting it on my husband's credit card and racking up debt.

Hi all.

I am a 20 year old female who used to work at a child development center. About 1 year ago, I started to notice I had random "flares" of sharp pain in the left shoulder blade. When I took a breath, the pain was unbearable. As time went by, a lump on my first rib appeared. Its sore, if not hurting, i feel a dull discomfort. My pain in in my neck on the left side, under my armpit, my left shoulder and shoulder blade as well as the chest area of where the lump is. Its driving me crazy. I cry from pain and exhaustion from this. I know how you guys feel. I have seen many doctors. A lot said Im just depressed because I lost my step father recently from cancer. I know its the the case because I had this going on before he passed away! I have had:

3 ultra sounds (one, the first doc noticed the sub arteries and such show up and thought it was a bit weird. He is the one who said all he could suspect is TOS but not sure, He was supposed to refer me to a diff specialist. He forgot I think because he was in a big rush) I brought it up to my primary doc, he didnt think so....
I had an MRI for rotator cuff.. nothing.
blood tests.. I am anemic and low on vit D. my thyroid is in the normal range but lower end.
many X-rays.

I dont know what to do.. I would consider surgery but as I read from many of you, its kind of risky.

I hope you guys continue this website. Im desperste to talk to people. I dont know for sure if this is TOS but today Im seeing a "breast cancer"/general surgery clinic.. Ill tell them what I think and ask for a different referal. I hope you guys are doing okay.

Magicmom, Im sorry for your pain. I understand and Im not sure what is could be.. I think I will ask the docs today if they are even the rite ones and I'll post to tell you what they told me.

Take care all. Email me if you wanna talk
****

Had it for 20 months and has been getting progressively worse, took this long to figure it out..

This is crazy
 

Six months ago I started to notice my left arm falling asleep at work. (I'm an electrician at an rv company) then I was waking up in the night with all kind of pain in my arm and my last two fingers. I turned in a injury report at work since i noticed it getting worse and was feeling it in different areas, such as my arm pit, my collarbone, shoulder, neck. and my arm and hand get so tired. I was diagnosed with TOS finally after 5 doctors and two rounds of physical therapy. Im at a loss. The newest doctor said surgerry wont help, but Im wondering how much more I can take. Im in some kind of pain from it all the time. Im starting to feel it in my face by my ear and getting real bad headaches. I dont have the extra rib but would surgery help? Im starting a third round of therapy this week and if it dont help I dont know what will be left for me. The work comp might just release me then Im screwed.

Tos
 

Good morning everyone:
I have been diagnosed with thoracic outlet syndrome (right side) with radiating pain to the left side, upper back and lower back as a result of a Whiplash injury of the neck (with branch nerve injury, disc c4-c5) as a result of a car accident where I was hit from behind with significant force. I also am diagnosed with dysphagia and neurophatic pain. I injured my Larynx and Esophagus in the same area of the neck.

I am the perfect recipe for disaster:
1) I am in my mid 40's
2) I am a woman
3) the impact was with significant force (70 km/h)
4) I stopped due to a car stopped in front of me, both hands on the wheel, my head looking at my left side mirrors when the impact happened.
5) I am intolerant to opiates and painkillers

I had to wear 8 weeks of physiotherapy tapes
I had to go to physio 2 a week for the first year, 1 a week for the second year, 3 times a month for the third year.

My condition plateaud when 6 months after the accident and I have never improved

I have 3 types of pain
1) Nerve pain
2) disc pain
3) soft tissue pain (horrible stifness in my neck, shoulders, upper back, center of my back down my spine to my lower back, 24/7

Treatment:
I have been treated with Lyrica (stopped using too drowsy)
t3'S (down to one a day due to intolerance)
Flexerel to relax the muscles at night, thus to be able to sleep
Nabilone which is synthetic THC and works wonders to help relax my core.


In the past 6 months I have experienced increased sadness and awareness of my condition.

Although I went to hundreds of physios, massage therapy and excercise daily and eat healthy, I am still suffering from the TOS which is horrible pain

I am affraid of reinjuring myself by accident due to the siliest things could exacerbate my pain or flare up
the weather makes it worse if its foggy or rainy and cold.

The sun if is too hot makes it worse

relief: Pain clinic shots (steroids, topical) , physio, meds (OC)

makes it worse: physical activity such gardening, sweep like movements with my right hand, computer work, stress, weather, and so on..

is there anything else I could do to get help?

just bumping with the links for new members

I had relief with Lyrica but side effects. Neurontin (Gabapentin) has given me similar relief without side effects.

Cymbalta is another drug that can help although I had side effects. I now take Pamelor (Nortripyline). Elavil (Amitriptyline) is another drug (but older) in the same family. These are antidepressents that have been found to treat pain as well. They could also help your mood.

Flexeril worked for me a while but eventually I built up a tolerance to just about every muscle relaxer out there. The anxialitic drugs seem to be more effective: Valium, Ativan, etc (I'm on Valium).

If physical therapy makes you worse, stop. Don't do exercises that aggravate you. Don't be afraid to find another therapist, one experienced in treating TOS. http://neurotalk.psychcentral.com/sh...d.php?t=172617

Thank you so much for your response.
I have never tried antidepressants in my life, but I am a mental health worker and I have seen some scary things on people taking antidepressants, so I avoid them at all cost, my mother sent me a bottle of Cell Food, I have been drinking 10 drops of oxygen, (cell food) daily and I have noticed an improvement in my breathing and colour (I am so pale, and I should not be) now even my eyes and face look healthier since adding liquid oxygen

my doctors have been proocupied ruling out everything else (thyrod, discarded, osteoporosis, discarded, all blood work and tests indicate that I am otherwise healty (not even a flu)
just the stupid pain that kills me soflty daily
the stiffness in my upper body and the shoulderblade/collarbone areas in pain 24/7,, I want to sleep for a month and wake up healed!

It will help for others that might want to reply if our new members make a thread of their own.
Main TOS page with threads listed -
http://neurotalk.psychcentral.com/forum24.html

Post here if you need help making a new thread.
Our site FAQs with help on basic forum use & posting -
http://neurotalk.psychcentral.com/fa...b3_board_usage

New Here
 

Hi all, I have peripheral nueropathy. I was diagnosis 8 years ago. My calves have atrophied. I'm about to get a pre op exam for a hysterectomy in a few hours. Last year my gyno told me not to get one because of my PN. Now, a new gyno says yes to surgery and it will be ok. I'm reading around that a hysterectomy can give PN. I thought omg, I don't need to be worse.

I want to start a thread here to ask around if anyone has had a hysterectomy. How many posts must I post before I can start a thread. I'm a little scared right now. :confused:


NM, I just saw the post before this one....I'm sorry- I'm just nervous now. I will make a thread per the instructions.

New
 

Lt. Sided 14 mos. Postop for Costcotransversectomy, 1st Rib Resection, & Neuroplasty. Dr. Donahue at MGH did my surgery. I agree w/ others here, he is most intelligent, compassionate & understanding Dr. I have ever had. Took 8 yrs. & ELBOW & shoulder & neck surgeries bf I was finally diagnosed w/T.O.S. by Dr. Donahue. Im debating when to have Rt. Side done. Too much PN pain, Bilateral Carpal tunnel, Bilateral Tarsul tunnel & Peroneal nerve compression, which I had surgery for in Dec. W/Cont. Pain & numbness. I was wondering if anyone here has extra cervical ribs?? my Dr. Says its very rare. I also still have chest numbness from surgery, which Dr. Says is very rare, most people its better by 6 mos. Postop. I guess my nerves are very sensitive to pressure.

TOS - Venous type. First rib resection 18 days ago.
 

Just wanted to say hello for now. I'm new here. Recovering from first rib resection, post-op 18 days. Dr. Daniel Clair, head of Vascular Surgery, at Cleveland Clinic did my surgery and I am very very pleased. My best piece of advice is to take at least 3 weeks off of work if you have first rib resection surgery. I tried to go back a little short of 2 weeks post-op, but was not a good idea. The longer you can rest and be under very low stress, the better for your recovery. Will write more later when I have time.

Hi, I have extra ribs and had surgery on my right side almost 10 months ago. It was unsuccessful. I was wondering, why did Dr. D remove your first rib but not your extra rib? Did he not feel it was causing any compression? Did you have any bands attached to your extra rib? Sorry for all of the questions but I am considering a second surgery and Dr. D is on my list of potential surgeons. Thanks :)

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!

I have heard good things about Dr. Kai Johansen in Seattle. It might be worth a shot to see him first. also have you tried PT? That is always the first step. Also Trigger Point injections have helped me. Botox helps some people but it didnt help me.Good Luck.-JKL

I have already met with Dr.Johansen and he wants to operate on my right side. Removal of the cervical rib, scalenectomy, and remove scar tissue.

Dr.Donahue in Boston would be a second opinion.

Dr. Johansen had me do a scalene block and it didn't really do much. It relieved some of the pain but only for about 15 minutes. Thus he said Botox is not an option for me.

Next monday I am getting a massage from someone familiar with TOS. I have had good luck with massage in the past in terms of temporary pain relief.

Only 10 shifts at work (lap top...sigh) to go. counting down the days.

I was diagnosed with TOS earlier this year. I've been improving, though certainly there are good days and bad days. I've found that trigger point therapy is the best way to address my symptoms :)

Howdy y'all I'm new here
 

Hi y'all! I'm 32 with a host of horrible physical & mental problems that all started with a breast cancer diagnosis at age 28 while 20 weeks pregnant. I did chemo while pregnant, delivered a healthy baby girl. I did more chemo afterwards & got PN from chemo. My brain never covered from the chemo-brain or preggo-brain.

I had a bilateral radical mastectomy with implant/expander reconstruction & began having intense pain/heaviness in my chest and collar bones. I went from dr to dr trying to find someone who'd figure out what was wrong with me. I had 2 more reconstruction surgeries in the hopes of 'curing' the increasing pain to no avail. The last reconstruction used abdominal fat to reconstruct my breasts & left me with a huge sensitive scar 2/3s of the way around my waist.

In between I had both my ovaries & tubes removed (I'm a BRCA1 mutant) & almost bled to death on the table so I had transfusions. After that surgery I had an abscess form on my uterus where the tube was removed & had to have an emergency hysterectomy. Now added to my chemo-brain & mommy-brain I also have menopause-brain.

With menopause I got terrible hot flashes that give rise to panic attacks. I also suffer from anxiety that I'll have another cancer diagnosis or something else wrong with me. I'm 5th generation (that we know of) with breast/ovarian cancer, but only the 2nd to survive. I guess I'm probably depressed too because I used to be an avid horseman, but now I can hardly groom a horse, much less care for one and exercise one. I used to be fairly athletic but also nerdy (I love to read and I love science). Between my inability to physically do things and my brain's lack of clarity, I can't enjoy the things i used to because I simply can't do the things I used to do. I lost my job in January and that was a severe blow to my self-confidence, self-worth, and identity.

It is theorized that during my mastectomy and the placement of my expanders, my brachial plexus was damaged somehow. I went from dr to dr (including a quack pill-pushing pain management dr) trying to alleviate the pain, burning, tingling, numbness, coldness, and loss of control of my left arm. One dr finally ordered vascular studies that showed impairment on both sides, but much worse on the left. An EMG again showed impairment on both sides, but worse on the left. I did PT for over a year. In the middle of PT, since I wasn't improving, I had a first rib resection done. Following more PT, I was basically told I knew all they could teach me, so I no longer went to PT.

In January of 2013, a little less than 4 years after my diagnosis, I was fired from my job with the main complaint being that my attendance was poor. I had FMLA intermittent leave, but my bosses were no longer empathetic. Even after being forced to submit to an exam by their own dr (who agreed with my dr about my condition), they gave me the bum rush out the door on trumped up charges. I didn't fight them any longer bc they were the state police & I was just a civilian laboratory analyst. However, I had completed almost 9 years with only commendations from law enforcement, attorneys, and co-workers. Upon my return to work and intermittent FMLA leave, I became a pariah and even my co-worker friends were harassed for being friendly with me.

My husband has disability due to a chronic low back problem and severe anxiety. We have 2 children (boy/5 & girl/3). With my job loss and his fixed income, we are constantly in the red, so I'm trying to file for disability myself.

My TOS makes driving nearly impossible on bad flare-up days. Sometimes my flare ups make sense (I did something to my arm the day before), but it seems like more often they are random and/or associated with weather patterns. In addition to the 'normal' symptoms with TOS, I get killer migraines. I don't experience vision problems with my migraines, but I do suffer from nausea, vomiting, light sensitivity, stiff neck, eye pain, and sinus pain. Sometimes the pain from the migraines & TOS combined knock me out of the land of the living for several days.

I have an adverse reaction (suicidal/homicidal ideation) to Neurontin & Lyrica. I currently take amitriptyline, hydrocodone, and cyclobenziprine in addition to a daily multivitamin. I also have asthma, so sometimes I use my inhaler (albuterol) & my migraine problems decrease slightly. OTC pain relievers and anti-inflammatories don't touch the pain of my TOS or migraines typically. I also know I'm at minimum heterozygous for a mutation in the MTHFR gene. I've tried a few different b-complex vitamins OTC, but never noticed much difference.

Between having all the above symptoms plus 2 very active & healthy (Thank God) children, I'm constantly exhausted. My chronic insomnia (life-long issue for me) only feeds my exhaustion. I recently filed for SSI disability, & go to their doctor/Chiro for an assessment on Saturday (8/10/13). I also have a forced appointment with a psychiatrist/psychologist later this month to assess my anxiety problems. I tend to put a positive spin on my condition(s) with others (even my husband and mother complain that they don't know what's going on for real with me & how much I'm flaking being ok). I'm terrified that I'll blow the assessments by de-emphasizing my problems with these new doctors.

Sorry this was so long, but as you can see I had a lot to say. I look forward to 'meeting' y'all and hopefully giving support to others as I get support from others too.
Thanks,
Erika

careful
 

Dental Hygienist many many years!!! :D loved it to much.
bilateral CT surgeries 83 & 98
MGH for TOS rib resections RT 2000 & left 2001
left Shoulder 2003 and years of PT
lost career and live with recurrent TOS every day!

Cliff Note Bio
 

I have been 'stalking' this site for almost a year, since November 9, 2012 when my school nurse pulled me out of class and took me to the ER. A few days prior I woke up with my right arm slightly red and it felt like I slept on it. I took it easy for a few days hoping that would solve the problem. Instead, it got worse and the symptoms became more intense. I started to see little bruise areas showing up, my arm became sore to touch or raise up, and it started to swell. By November 9th I showed my coworkers my arm; since they both coached high school sports they had seen a lot of injuries. Both thought it was a torn muscle. I asked for the school nurse to come to my classroom and take a look at my arm. She showed up and immediately requested a substitute teacher for me and drove me up to the ER. They diagnosed me with a blood clot going from my brachial to my subclavian veins and I was admitted to the hospital for 3 days till my INR was correct. I am an athletic 31 year old female. I teach art and enjoy backpacking and gardening. I am a non-smoker, don't take birth control, or fit any other criteria for getting a blood clot so young. I live in a small town and I am learning that many doctors here are unfamiliar with TOS and because of that I was sent home on blood thinners and a check up with my GP. After switching to an internist and receiving 3 more ultrasounds due to ongoing symptoms, I finally received a referral to a vascular surgeon (I don't have any blood disorders that would have caused the clot). He spent some time talking to me and agreed with my research that I had tos. Even though I have always been an active individual, it has only been in the past 3 years I have started using my upper body. I bought a 100 year old house and have been renovating it myself. All the pieces finally fit together. Throw on top of that poor posture and I seem to fit the description of vascular tos to a 'T'. I have seen an orthopedic surgeon, neurologist, countless imaging, and physical therapy including manual manipulation, my surgeon agreed to the surgery. Contrast MRIs showed vein occlusion bilaterally when both arms are raised. The University of Utah will not do a rib resection on my left side until it gets a blood clot as well. I can't imagine living life wondering when the next clot will happen once I am off of Lovenox so I made an appointment in Denver to see Dr. Sanders and his associates. Recovery is harder than I expected it to be. I know most of you can understand how isolated you start to feel going through this. It takes so long to get the diagnoses, I was lucky it only took a year. My mother died of a pulmonary embolism due to a broken ankle, so this adventure has been very anxiety causing. I wake up feeling decent and by the end of the day my arm is throbbing pain radiating from my arm pit and circling around my shoulder from top to bottom and radiating into my elbow, down my forearm and tingles into my pinky. I feel distanced from my friends because I can't do much with them and I don't want interact when I hurt this much. It's no win. I can say that this has caused just as much pain mentally and emotionally as it has physically. To go from a 6 day a week hiking routine to not being allowed to lift more than 2 lbs. is a struggle.

TOS and the Brain symptoms
 

Hello All
I have been DX with bilat TOS for several years now and I 'm finally scheduled to have left rib & scalene resection this month. My surgeon will be Dr Braun in San Diego does anyone have any helpful hints that may give me an idea as to what I might expect post-op short and long term? Any suggestions and experiences would be appreciate. Although my surgery is near I am unsure as to so many things, I've been unsuccessful in communicating with the surgeon so at this point im not even sure where my incision will be, how long before ill be unable to drive and so forth makes planning almost impossible.
I've also noticed that my symptoms have been getting worse. I'm not sure if anyone has had any of these aside from the nagging burning pains, headaches, stiffness, cold extremities, swelling, anxiety etc.
what is starting to concern me is my increasing cardiac palpitations, vertigo and brain fogginess. Sometimes oftentimes I cant think of the correct words and say things backwards. I can describe it as almost what I would imagine a combination of ADD and dyslexia with poor speech and grammar making it difficult to communicate effectively??? I used to think it was the medications making me foggy IE Norco & soma but Ive decreased them both and nothing has changed I've actually gotten considerably worse.
I'm a student and I've been going to school for over 4 years doing well & now neadless to say Its gotten to the point that I'm failing in school due to poor memory, and no attention span. I'm also a Mom so I've always corrected my Kids' speech and being that they are now teenagers they are pretty good at returning the favor and half of the time I don't even catch myself saying things backwords or slurring my words just yesterday I was attempting to explaining arterial blood vs venous to my 13 year old and I said something like there is "air in the oxygen". Stuff I've been able to do for almost 20 years without a problem is now a challenge.
I've been told my bloodflow has been compromised due to decreased venous return and I get the correlation but will this return post-op? and how quickly?
Does anyone have similar experisences?
I expect to have some lifelong physical limitations but I'm really nervous and frustrated about adding stupid to the list.:confused:

I am 33 years old am married and have two children (5 and 7) and have Been fighting what seems like TOS since July of 2009. I was working 15 hour days at a computer for a solid decade in a completely non ergonomic setup and symptoms progressed to the point where at my worst I could not even brush my own teeth or hair. I went the Workers Comp route and played the Dr shuffle game with a young neurologist mentioning I potentially had TOS and prescribed PT which helped moderately. WC than bounced me around to a local orthopedic hand surgeon, rheumatologist, and physiatrist after kicking me around for about six months with the local physiatrist they sent me to a month long pain rehab center which issued my Maximum Medical Improvement and permanent impairment rating which basically kicked me out of WC disability. I live on Lyrica 150 TID that and exercise make things tolerable at times. I have been back to work since spring of 2011 at a much slower pace than I used to usually 8 hours or less. Starting earlier this year My symptoms began to escalate and it feels like Déjà VU. I seem to be racing towards being unable to perform my job and disability again however with my MMI and PI I am pretty well excluded from WC. Even with the Lyrica at this point I am not able to drive more than short distances and all tasks seem to be difficult. I am looking to find a Dr familiar with TOS and similar conditions to examine me and recommend studies to identify the causation. If I am a candidate for surgery I am ready I have a lot of life ahead of me and 3 people that depend on me and if there is anything that can make this better I am willing to do it.

hello
 

From my screen name you can tell that I am an xray tech aka radiologic technologist.

My symptoms from a work related injury have not resolved as they should have with the treatments I have had, so I am being referred to a neurologist for nerve testing. The docs I have seen so far are suspecting brachial plexus involvement.

From what I have been researching about TOS in the past few days, my symptoms are classic and also atypical TOS. My specific work injury and also the specific work tasks/postures/physical exertions in awkward position with mostly overhead work would seem to fit the profile as contributing factors.

It is kind of worrisome to speculate this diagnosis. I hope this is a condition that can be cured with conservative treatments so that I am able to return to my chosen profession. I am to old to retrain for another career.

Are there any other xray techs here who have TOS and have quickly returned to work?

Hello all...

I have an appointment at the end of this week with Dr. Lam at Johns Hopkins for testing and evaluation for bilateral TOS. I have a few complications which will not help, such as Ehlers-Danlos Syndrome and cervical issues. In looking back, I think the symptoms have been around for awhile and I've just been blaming them on my bum neck and they are progressively getting worse. My PT is the one who figured out that TOS might be to blame instead, and my local ortho agrees, so off I go to JH. On my right side, I have a malunion clavicle due to a car accident years ago; on my left, the only thing I can think of is that I took several blows to the brachial plexus back in 2006. At the time, it caused loss of vision fields in my left eye for several days and a headache; after CT scans, etc. were done the final diagnosis was opthamalic migraine and "bruised" carotid. It seemed to resolve, so not sure if that's even the issue or not.

Thanks and I look forward to learning from you all!

Post Surgery Both Sides for TOS
 

I just want to put in a word of encouragement for any of you in need of the TOS surgery. Please, don't be afraid! Find yourself a competent, caring, and EXPERIENCED doctor.

I was fortunate enough to have found Dr. Avraam Karas in Baltimore, MD. He's done well over 2400 of these surgeries. He said on a scale of 1-10, I was a 15 on both sides. And I'm here to tell you today, 9 days out from my 2nd surgery (one on each side) that I don't think I could have continued to go on if I hadn't found Dr. Karas. He literally gave me back my life! I am 58 yrs old and have suffered for over 20 yrs, and had been misdiagnosed as everything from fibromyalgia, to just generally being a nut seeking attention.

Turns out I had a real, and very painful condition that could be corrected. I am able to fully use and freely move both arms, without even a hint of pain. And I had literally lost my pulse in my right arm. So please, if this is happening to you, get out there, find that special doctor, and if you're in the MD area, look up Dr. Karas before he retires! He's not only a fabulous surgeon, but a warm and compassionate human being! Thanks Dr. Karas! And thank you Dr. Harvey Pats for referring me to him!

45 year old male here with a wife and child. Live south of Boston. I've had two bouts with NTOS, the first about 3 years ago on the right side and currently on the left side.

I've been very active physically for years. Love working out. I'm about 6'2" 190 and consider myself in very good shape for my age. Unfortunately, it seems that this activity has triggered both of my TOS episodes.

My first experience started with what I thought was a simple shoulder injury. MRI was inconclusive and was told to do rotator cuff exercies for 4-6 weeks. The situation failed to improve and worse, my shoulder "impingement" pain turned into more of a burning pain on my scapula. For what seemed like months I kept trying to explain this pain to doctors, physical therapists, etc., but nobody really understood. I battled for months and then just decided to throw in the towel and have shoulder surgery. And then almost immediately after I made the decision, I had excruciating pain at the elbow due to ulnar nerve compression. Surgery cancelled.

This triggered a journey to visit doctors of all kinds...which seems common with us all. Neurologists, Neurosurgeons, more orthopedics, accupunture. Probably visited 15 different doctors. I was just about to basically give up and come to grips with the fact that I'd just be in pain forever when I decided to make one last call to a Dr. Kasparian at Lahey clinic. Almost immediately upon examination, Dr Kasparian indicated that I may have "transient thoracic outlet syndrome." He felt that my TOS was due more to hypertrophy of the scalene muscles because of working out. Many tests followed and an MRA revealed that my subclavian artery, on both sides, was being pinched by the scalenes. In Dr. Kasparian's words, "it was the real deal."

So at least I knew what I was shooting at. It felt great. I was then routed to vascular surgeons at Lahey. They found a "bruit" on my right side and felt that I should have surgery IMMEDIATELY. I was suddenly scared and felt a need to get 2nd and 3rd opinions. I searched high and low, found these message boards among others and somehow was lucky enough to find Dr. Dean Michael Donahue at Mass General. CT Scans were done and it was here that I found out that I was one of the lucky ones with cervical ribs. Dr. Donahue was hesitant to jump to surgery since I had managed the symptoms pretty well so he recommended botox. I received the injection and I haven't had issue on my right side or other since...

...until now.

Per my recent posts, I'm now experiencing symptoms on my left side. A throbbing neck, forearm, and hand pain has been with me since mid December. Most recently, this pain has been replaced with pins and needles. I'm doing a lot of therapy on my own and it seems like symptoms have diminished a little. I visited once again with Dr. Donahue who recommended another botox shot. This was done about a week ago. I'm hoping for the same results, but so far, no real improvement. Crossing fingers.

KY