My doctors (with the aid of my latest specialist, a vascular surgeon) have finally given me a diagnosis for the chronic pain I have had since November, 2004. It’s called thoracic outlet syndrome.
There is very little information about this syndrome on the web. This same lack of information makes it difficult for doctors to know of, diagnose, and treat the problem. However, I pulled up some reference to it online that will help to explain my diagnosis.
What is the Thoracic Outlet?
The space between the rib cage and the collar bone through which blood vessels and nerves (3) go from the neck & thorax to the arm via passage between the scalene muscles (6, 7).
What is Thoracic Outlet Syndrome (TOS)?
TOS is pain, numbness, tingling and weakness in the affected area (my left arm) caused by pressure on the nerves & or blood vessels (mostly the nerve for me). In most cases the symptoms are intermittent (mine are constant). The diagnosis for TOS is not easy to make as negative test results (MRI, EMG) do not rule out the syndrome.
What Causes Thoracic Outlet Syndrome?
TOS is caused by a compression of the nerves and blood vessels. This can be due to an extra rib, old fracture, scarred tissue, or even large breasts (causing the shoulders to droop). All causes are not known.
Some people are born with extra scalene muscle fibers in both thoratic outlets, narrowing the passage (for example, I have no pulse when my arms are above my head), but this may or may not lead to TOS. In my case, it did. My diagnosis is partly a mystery, but these larger muscle fibers, and some scarring from an old whiplash injury, were partial contributors.
In my case, the pain is constant and has no main trigger to make it worse. There is no obvious compression on the nerve, but it is clear that TOS is the cause (finally). Additionally, there is some concern re: the nerve passing through my elbow, as that may also be too narrow.
Treatment
Treatment varies per patient, but usually starts conservatively. My treatment will include:
- physiotherapy (Feldenkrais – a specialized type of physiotherapy)
- massage therapy
- rehabilitation therapy (to address the whiplash)
- posture correction
- exercises
- ergonomics and frequent posture changes
- acupuncture
- Botox (to relax the scalene muscle)
-
combination of medications
- neurontin/gabapentin – for nerve pain
- tylenol – for pain
- advil – to reduce muscle tension
- cyclobenzaprine – muscle relaxant while sleeping
Additionally, I will be getting another MRI and another EMG (not looking forward to that) and joining with a new neurologist for consultation. It is hoped that this combination of aggressive therapies will relax the muscles, which act in a vicious cycle to compress the nerve, which makes me tense, etc.
Surgery for Thoracic Outlet Syndrome is the last resort. Surgery would involve removing the scarred tissue and perhaps widening the thoratic outlet. Aggressive therapy would still follow the surgery to correct posture and relapse into TOS.
So, that is where it stands. I am happy to finally have a diagnosis (rather than just ‘chronic pain syndrome’), albeit one that is not easy to fix. I am looking forward to beginning therapy, but am not looking forward to paying for it (I don’t have extended medical at the moment). Â
Tags: thoracic outlet, tos, medicine, diagnosis, nerve, chronic pain
P.S. To add to my post above, any good recommendations for *osteopaths* in Ontario who can deal with TOS would be greatly appreciated as well! I think I would be more comfortable with an osteopath than a chiropractor (at least to start), but they seem to be harder to find here. Any advice (even in general about treatments/doctors in Ontario) please send to checkitout_86@yahoo.ca Thanks again! :)
Hi, I live on Vancouver island in BC Canada. Does anyone know of a TOS doctor near by me? Please let me know. Thanks
hey guys i know its been awhile since i wrote considering slowing down due to being pregnant. but i am still in extreme pain, but i feel a light is at the end of the tunnel. i had spoken to my nuerologist about it all and how the standing mri showed more than the traditional lying down one, also how my old emg showed radiculopathy when i was sitting and the new one showed nothing as i was lyind down too… so he explained to me that the darndest thing happened w/ a pt once during a myleogram she moved and when she did they saw her disk actually pop out and impinge her spinal cord so they did surgery right away…. now he has set me to come in next week and finally i am so believing that the medical profession is wrong and we need advances. this is the reason so many surgeries have gone bad the human body is in motion not lying still in a coffin position. well i will write back as soon as i know more….
All you need an osteopathic physician that specializes in osteopathic manipulative medicine to treat thoracic outlet syndrome. Why on earth would anyone do surgery on something that could be treated with OMT?
osteopathic person, i am sorry to tell you this but that type of treatment does not always fix every1 and i am proof of that… i have seen the best of the best with no results that last and i go 3x/wk for a good 6mos now and i have tried it all. some people just dont feel like getting false hope, we need answers and solutions not band-aids.
I was released from work on Dec. 4th 2002 and I have not been able to work one single day since.
I was going to the local VA here in Phoenix, AZ and it took them 7 months to give me a test called the Allen test. It shows without a doubt that you have a constriction in your shoulders that cause your pulse to stop when you lift your arms over your head. I was another year, all this time I was in pain, before the VA would say that it was possible that I might have TOS. I signed up for State Health Care and went to see a real doctor.
This Doctor sent me for a MRI followed up by an EMG, ouch they are painful, and after about 3 months of testing it was diagnosed that I did indeed have TOS. I was sent immedately to a TOS specialist. He spent 3 hrs with me doing different movements to see how bad it was. He also looked at the EMG report as well as the MRI’s
He called another specialist and between them they sat me down to explain the news. The nerves that had been constricted were damaged beyond repair. By this time 3 yrs had gone by during which I had been going to a pain management clinic and being prescribed Morphine for the pain since the VA had me taking 4,000 mg of Vicadon a day, I was unable to get any relief from the milder pain meds.
I am on Disability now and I know that I will be on pain medication for the rest of my life and that not even surgery can help me now.
I hope and pray that if your case is newly devolped…consider the surgery if it comes to it.
I have lost the basic use of my left arm, 2 fingers which have apthorpied so I can no longer use them. My life is over and 90% of what I used to do is no longer available to me..I suffer from depression as well.
I will pray for all those who have this condition
To Helen in New Zealand,
I do know exactly how you feel and I completely understand about the depression as well. I suffer from both as well as back surgery that did not fix the prolem…..just added to it. The doctors I have seen here have been honest and forthcoming with any information regarding my condition or mental health. This is what I am now….a wife who loves me, a dog that my doctor prescribed from me, she is a therapy animal. She has done wonders when I did not deserve to even care, she has made me smile and I love ger very much. You might feel better with a therapy animal…doesn’t have to be a dog…could be a kuala…lol. Just remeber this one thing…You are NOT alone
I will be seeing a TOS surgeon in Knoxville TN. I had surgery thru an Orthopaedic last year and it just made me worse. he is the one who diagnosed my TOS. For anyone who has had the surgery and can tell me about it and the recovery please email me. Thanks, lisafc2000@yahoo.com
Wow I was just searching the web looking for some answers for my current condition when I happened upon this blog. I was diagnosed with bilateral TOS in 1997 after a MVA in 10/95. This was after 18 months spent seeing more than 6 medical specialist(including a DO and Chiroprator),and 3 different PT.s the last of whom was on the ball and sent me to Steven Farrel MD.at UTMC, who sent me to Bernardo Martinez MD., a vascular surgeon who gave me a definitive diagnosis and operated on me endoscopically. I had done my research and found that he was one of a few surgeons in the world doing the TOS surgery in this manner.The orthopaedic surgeon basically wanted to dissect me from above while Dr. Martinez maintained that it made much more sense and was minimally invasive to perform the surgery through the armpit. I had two very long but successful surgeries in 1997 and 1999, they included partial scalenectomies. The surgeries gave me my life back! However the correct rehab is of the utmost importance! Therabands (physical therapy favorites) usually will aggravate the already stressed TOS patient. Aquatic therapy prior to and after surgery is the way to go. It gives you the best chance at full recovery as there is little weight bearing and resistance yet full range of motion. Before consenting to surgery do your research! While many Dr.s perform the surgery you want to know how they do it and what their success rate is. Ask to speak to other patients that they have treated, if they site privacy issues- be wary a good doc will find someone for you to talk to. I am unfortunately seeking treatment for recurrent TOS again due to another MVA in 05 but I am not a surgical candidate. I understand the pain,depression, and frustration once again as I treat with my favorite list of MD.s and a great manual PT(also a must in my experience). I also recommed seeing a mental health professional TOS colours every aspect of your life-and you may not even realize it!
I found out i hand neurogenic thoracic outlet syndrom when i was 13 years old. I am now 24 and its getting to be a pain. I am scared i might die from it. I am getting bad head pains and lots of numbness. i have lots of symptoms but my hands hurt to much to type them all. i dont go to the doctor to get help now because i’m scared. i just want hanest answers first.
Hey everyone,
I just came across this website when i was looking for some more info and treatments for TOS. I just wanted to join the club and share my story with you guys.
Im almost 19 right now and I have alot of wrist/arm/neck fatigue and pain (from when i was about 15 it began) and the doctor thought I was making it up at first, then he thought it was carpal tunnel.. then i went to a physiotherapist and he said that it is TOS.. i’ve been doing physiotherapy for about 3 months and now i am doing it on my own.. i’ve noticed some relief but there is still alot of fatigue…
Well, just stay patient and i wish everyone the best.
There is a great thoracic unit at Mass General Hospital in Boston for all those who need Doctors on the East Coast.
I have had TOS for several yrs. now I got it from 2 car accidents back to back :( I fought with ICBC for 7yrs….I have had a First Rib Resection and it worked fabulessly for a few monthes then something happend, not sure what although did not have a total relapps. My Dr. was Anthony Salvian. He is the only 1 in Van. he has a collegue in Kellowna but that is the closest next 1. I also tryed the temp nerve freeze that didnt work out to well for me as i did it twice and both times my eye was wacked :s
I have been told that this is the end of the line for me…that there is nothing else that i can do, i am very frusterated, does any1 know of anything else???
sassy.mj@hotmail.com
I won’t bore you with the long story of my TOS- I’ve been dealing with it since 1995. At 25, I had a blood clot in my right arm; stayed on blood thinner for 2 years; had rib resection in 1997. Scar tissue has built up and I’ve been in pain since. I’ve had lidocane shots, botox shots, PT, massage, MRI’s, been on neurontin, cymbalta, zoloft. Nothing seems to work. Sooo… I went to a new surgeon yesterday and he is pioneering a new surgery where he’ll cut the scalene muscles and scrape the scar tissue from the nerve. Then 10 weeks after surgery, he’ll operate on the elbow and move the nerve from the back to front (since it gets pinched there as well), and also do a carpel tunnel surgery on the wrist at the same time. I am a 38 year old, active mom of 2. When I had the first surgery, I was single and had no worries of complications. Now I don’t know what to do. Has anyone heard of this type of surgery? He’s done 60 of these operations and is seeing great success, but I don’t want to get 10 years down the road and be worse than I am now (like with the rib resection). Also, is there anyone out there that’s been dealing with TOS longer than 12 years- does it get worse if not treated? Help!
everyone with scar tissue and any other complications should check out http://www.laserspineinstitute.com
Hi everyone
it’ss been a long time sinnce I’ve posted, but i thoughtn i should update my story.
First of all, I hhighly recommend Dr. Fry Vascular surgeon in the BC lower mainland. He is now in Langly and will be operating out of Abbotsford. He has and actual TOS clinic.
Dr. Travlos in Sports and rehab medicine does my Botox injections every 3 months in the right side since I’ve had my extra rib removed.
This week, I was diagnosed with Double Crush Syndrome which is extremely commmon among neurogenic TOSers. That means I have Cubital Tunnel Syndrome as well which affects the ulnar nerve as it runs through the elbow. anyone who has had the rib resection and has not improved much should ask theit Dr.sf about it!
that means i have 5 more surgeries coming up asap.
One more resection, 2 decompressions, and 2 nerve translocations. Believe it or not, I am excited.
I have a 3 1/2 year old, and i can barely wash my hair, nevermind child care, laundry,, etc..
I’m sure you all understand.
And to the girl whos terrified, if you don’t get it fixed, you coulld end up with DVT, a blood clot that could lead to a stroke, or permanent nerve damage and atrophy in your hands/arms, and other unpleasant outcomes. Find a good doc and do some research, make that lots of research
Take care all!!
Hi Everyone,
Just came across this BLOG. I’m happy to say that I feel I’m a success case for bilateral 1st rib ressection done by Dr. Bill Nelems in Kelowna Jan 2002. You can read some of my story on TEllmeaboutTos website. Briefly, I was athletic growing up and can remember earliest symptoms at age 10-12. I was a swimmer, tennis player…ended up going into Phys ed then became an Occupational Therapist…had 2 children and all along suffered with the pain, tingling, numbness, coldness etc until I was 42 years old. The problem with having it bilateral and never having an injury to cause the condition is you have no comparison as to what is normal.
Well, I’m happy to say that yes the surgeries were no fun… the recovery intensive Physio but now 6 years out I’m pain free and can bike, run, play tennis, work as much as I want as a pediatric Occupational Therapist (lots of physical work)and sleep through the night.
I can relate to your stories and I’m too has a long path to specialists before I got to the right person (and I even went to the right specialists and still was missed). So don’t give up read and search out the specialists in your area, and travel to who you have to because life is too short and it is so much better sympton free.
I just had my second ulnar release surgery done. This time they cut my muscle and tucked the ulnar nerve between the muscle. They also had to perform an ulnar nerve release at the wrist and carpal tunnel.
Ive always had pain in my left axillary area radiating to the breast since the ulnar nerve pain started. This was always pushed aside. After surgery I continue to have this pain and have been to the ER several times for chest pain, which I always believed was not cardiac related and wasnt. I am now going to see a vascular surgeon to r/o tos. I have not been able to work for almost 3 years now since I was diagnosed with ulnar nerve palsy and I would like to apply for disability SSDI but I am having a hard time to get a firm diagnosis of my medical problem. Would having tos along with all my other medical problems possibly be a legitimate reason to apply for disability.? I also have herniated cervicle disc along with lumbar disc herniations as well. Ive have chronic pain since I was 12 which bilateral tmj that I had surgery at 21. Ive beeen in 5 car accidents each one was rear-ended. I have daily ha mainly on one side always in my left eye. All my medical problems are on the left side by the way. Any advice what I should be looking for or if disability is an option? I am under 40 years of age so that also plays a part Im sure in being approved. Any help is greatly appreciated
I had toc operation 1yr ago and now have sever nerve damage as a result of scar tissue from the operation I cannot touch from the certre of my chest to my muscle in my upper arm as its like electric shocks and often get burning sensations they are now going to try quqrtizone injections directly into the scar tissue and said it will kill off the nerves in time.
Hey all, I have had TOS for 10 years. It was getting really bad, could not sleep on my right side, dizziness, on and on. But I had my surgery 9-8-08 at toledo ohio by DR. Bernardo Martinez and the Da Vinci Robot. The 2nd week was bad, the numbness started to come out of my arm and the nerve pain was pretty bad, but I haven’t had any of the symptoms that I had before surgery. It’s only getting better every day….
I have been having severe pain in my right arm, hand and wrist. I can’t really describe it other than to say that it’s like numb, yet painful, with tingling pricking sensations. If that makes any sense. My first visit was to a chiropractor, where he told me that I had a flexion fixation. Which still left me asking questions. So I went to my MD. He was familiar with TOS. He said that I had all the symptoms. I had never heard of TOS. I am just happy that other people out there know how and what I’m feeling. It’s horrible pain that you really can’t describe to anyone. He would like me to try to sleep in a recliner at night for a few weeks, because the pain is so bad that I can’t sleep anymore. And he also wants me to try some relaxation exercises of the shoulders. If it doesn’t lend me some relief, then he is going to run more tests on me. I have no insurance, so I’m sure it will be costly. I am overweight too, so I’m wandering if that is the main reason why I’m going through this, or if there is another reason. I just wanted to say thanks for posting this blog because i was starting to think that people thought that I was crazy.
So glad to have found this blog, although I have been searching TOS on the web for 2 1/2 years and this is the first time I was led here. My TOS story started in April 2006 and is the result of poor ergonomics on a work computer. I am on Worker’s Comp and have not worked in one year. I am having the first rib resection on Nov. 12th. Very scary. So many have had disastrous and disappointing surgeries, but then so many others have had succcessful outcomes. Hard to know what to think. I have been praying for srength and good direction and so far I feel OK with my doctor. My main symptoms are very cold hands, especially when typing, a painful left wrist, furrowed fingertips that swell with exertion, muscle atrophy in both hands (all veins and tendons are very obvious; ugly) loss of pulse when arms elevated, sharp, nagging pains in both shoulders and upper arms, especially the deltoid area, headaches, weakness and clumsiness. I have had 4 rounds of PT and 2 rounds of OT. Went to three therapy places before I found people who knew what they were doing. Fifteen doctors!!! A stellate ganglion block which did nothing. Chiropractic which was a dead end. Massage therapy, which relieves some pain temporarily. Two EMG’s, one SSEP, 4 MRI’s, 1 CT Scan, 2 vascular studies, lots of blood work. My first doctor diagnosed TOS on November 1, 2006. The last two years have been spent convincing Worker’s Comp that this is true and I need surgery. Initial surgery scheduled one year ago was stopped by the WC Medical Director. The whole process is amazing. If anyone can give tips and insight on what to expect after surgery, please email me at rnandpen@yahoo.com. Thanks.
so glad to have found this site. I have been suffering since Feb of 2007. I have been in PT continuous since that date until 2 months ago.
I have had 2 surgeries to the right shoulder.
first being acromiaplasty, clavicle resection…
then 6 months later a repeat of that plus a small rotator tear. Pain still continues when I raise my hand shoulder high. Tingling, pain, numbess even into my face/lip all right sided. I have had shots in the spine for a disc bulge. My PT is the best he figured this out long before anyone else would listen. I am now at the beginning of the TOS diagnosis and have my second EMG tomorrow.
I have lost jobs and now I am ready for surgery… anything to make it better.
I am sorry anyone has this but nice to know I am not alone in my struggles.
ALL I WANT TO KNOW IS IF THE PINCHED NERVE IN MY NECK ( WHICH THEY CANT DO ANYTHING FOR ) IS IT RELATED TO THORACIC OUTLET
I believe I have TOS, I went for a massage to get pain relief from my shoulder, arm, hand. I now need to know how to talk to my doctor about it. She is that easy to talk to, and yes I am still have extreme pain at times. It feels like labour pains. Can anyone help me.
I need to find a doctor, in Ontario Canada, that can help me diagnose, TOS. Can anyone help me.
Louise
if she isnt easy there are a lot more that are.
look up TOS in your area. It is a neurologist and a vascular surgeon that will be doing my surgery.
Look outside the box, a lot of doctors haven’t even heard of it and I am told it is hard for them to diagnosis it. You have to be your own voice and be heard. Print out info, take it with you. Record your symptoms, test…
Hang in there… it took me 2 years.
Can’t stop now.
I’ve had the misfortune of having three chronic pain conditios: Reflex Sympathetic Distrophy, Fibromyalgia and Thorasic Outlet syndrome. The best (and only) thing I’ve found to beat back my chronic pain back is with juicing every day. It restores my digestion and allows my body can heal itself. It doesn’t seem to matter what fresh juices I use; I now drink mostly a carrot/celery blend. he live enzymes in the drink is the key to helping my body get the nutrients it needs to sleep and function.
Does anyone know anything about getting SSI/SSDI benefits for TOS? I was diagnosed nearly two years ago, and for one enitre year I couldn’t work or take care of basic needs on my own. Now I can function better with the help of neurontin and other pain meds, but I am still not well enough to have a regular work schedule, and I’m still limited in the type of physical activites I can do. My condition, as far as pain level and level of disability is variable and largely unpredictable. Pain or loss of function can be triggered by something or it can come on with no apparent cause. Nerve pain can be an annoyance or it can make it impossible to wear clothes. Migraines can last two weeks, and then be gone for a month. Sometimes I can feel fine, well enough to prepare a meal, and then suddenly have too much pain to wash the dishes. I can do so much now that I couldn’t do a few months ago…but I am still very much in need of help. I’m so thankful to have a little bit of my life back that sometimes I forget I’m still disabled–and then I try to do some benign activity and find out that I can’t. It’s difficult to accept the limitations that come with having a serious nerve/ vascular problem. But what makes it more difficult than it needs to be is the lack of resources out there to help people like me–people who are young and look healthy but are disabled and now homeless as if that weren’t enough–which brings me back to my point…does anyone know any tips for getting disability with this condition? I’m in my first appeal. I have proof in the form of an MRI series from Dr. Collins at UCLA, a letter from my physician who specializes in this, and two years’ worth of medical records documenting my debilitating symptoms. They say I’ll probably have to wait a year to get a court date. But I need help now! Help, anyone?
This from the atosa.org website
American TOS Association
California Judge Issues Landmark TOS Verdict!
California Workers’ Compensation & Social Security Disability proving very difficult for most TOS patients.
A SOCIAL SECURITY BILL OF RIGHTS FOR T.O.S. VICTIMS
by Neil D. Eisenberg
In a landmark decision, a Social Security judge in Northern California has issued what amounts to a bill of rights for thoracic outlet syndrome victims. Judge Erickson gave the claimant everything a T.O.S victim could ever hope for and stated in clear and precise language why thoracic outlet syndrome can lead to total disability. Even more important, however, is the fact that the TOS patient had gone back to work on a part time basis, and the Judge rewarded her for going back to work and granted her training benefits which are now available under the Social Security law. The TOS patient testified at her hearing that her own doctor had given her a job on a compassionate basis as a receptionist and part time secretary, but that she was unable to type and could only drag a mouse on her computer. The judge accepted the patient’s testimony and awarded her full benefits up to the time that she went back to work and then construed her present employment to be compensable training under the Social Security Act. Judge Erickson bolstered his decision with the opinion of a vocational rehabilitation expert who testified that if a claimant could not effectively type in an office job, the claimant was currently taken completely out of our modern economy. At the time of the hearing, the TOS patient had suffered from thoracic outlet syndrome for 4 years as the result of being hit head-on in a motor vehicle accident case by a drunk driver. At the time of the accident the TOS patient had been in excellent health and had been working. The TOS patient applied for Social Security and was turned down but appealed. copyright 2008 Neil D. Eisenberg and the American TOS Association. Edited version
EISENBERG LAW OFFICE
NEIL D. EISENBERG
THE HOBART BUILDING
582 MARKET STREET
SUITE 912
SAN FRANCISCO, CALIFORNIA 94104
Tel: (415) 956-3567
Fax: (415) 956.2937
A PROFESSIONAL CORPORATION
Nice blog. It sounds like TOS is rather mysterious in terms of diagnosis and being relatively unknown.
I have not had an official diagnosis, but have been having many of the symptoms I’ve read on here for about 3 months now. I am 38 and male.
What I’ve been experiencing:
Pain, basically a dull pain that comes and goes in the right shoulder, upper arm and elbow area. It is exacerbated and becomes sharp when I reach over my left shoulder. Also, I feel mild pain sometimes down my right arm when I stretch my head/neck to the left. If I swim or throw a ball hard the pain quickly turns from dull to sharp.
Numbness, mostly in my right hand and arm but sometimes my left. Usually it is from sleeping on my stomach or back with arms overhead. This numbness goes away quickly after changing positions. Sometimes I get pins and needles in my pinky and ring fingers when at the computer (my line of work), and also when I hold my arms over head for a period of time. I once had pronounced numbness in those two fingers triggered by agressive Yoga, which took a while to go away.
Cold hands. I also have a tendency for cold hands (and feet), but I’ve had that for as long as I can remember.. well before the onset of recent pain & numbness.
My symptoms are very minor compared to what I’m reading here, but they still are disconcerting to me. I really hope they don’t worsen over time. I picked up triathlon last year after being a competitive amateur cyclist the past 12 years. I believe it is the swimming that has aggrivated my shoulder/arm area. Needless to say, I’ve dropped that and gone back to strictly cycling (plus some weight training) once again.
For a mild case of TOS, is weight lifting and stretching considered helpful? I’ve begun doing upper body pushing and pulling exercises which I feel are beneficial in terms of improving circulation. Since my arm pain is nerve related, even heavy weight exercises doesn’t hurt as long as I keep within a certain range of motion.
Thanks for all the comments on here. My wife no longer thinks I’m nuts, or just letting stress go to my head. heh
If I see any of the acute warning signs I will get medical attention pronto. I just hope this is reversible and doesn’t come to that…. best wishes to all the TOS sufferers out there.
Hi everyone. Just thought that i would leave a little message too. Im in the UK and there are pretty much no dr’s who have a lot of experience in diagosing and treating TOS – a physiotherapist mentioned this condition to me about 3 years ago after 6 months of constant pain in my shoulder blade, arm and hand (arm and hand was not constant pain that would come and go and was worse when typing at work). Since i have been to a neuro and a vascular surgeon – who did not have a clue about TOS and now im with a pain consultant who is a little more clued up but not a ‘specialist’ by any means. He is considering botox in my scalenes as when he pushes on certain scalenes they are very tender and reproduce my arm symptoms.
I have muscle wasteage in my right hand thumb and wrist and a little finger that tingles and turns purple when i do too much. Sitting and sleeping comfortably are a constant battle but i manage to get by – i will not be beated and constantly try to find ways around things that cause me discomfort. I find heat a massive help – lots of time soaking in the bath and electric/stick on heat pads are what keeps me sane!
I have also joined a fantastic online support group whose tos members havehelped me through some tough times. They also have a vast collection of names of good tos doctors in the US.
http://neurotalk.psychcentral.com/forum24.html
My one piece of advice – NEVER ever let anyone (dr or otherwise) tell you that your pain is all in your head – if any dr hints that to you then move on….
Tracey
Hi Everyone – and Tracey in particular – as I too am in the UK.
I have TOS and was misdiagnosed and consequently given detrimental treatment for 8 years before finally meeting a fantastic doctor who is a European specialist in TOS.
Mine is quite severe and I suffer on both sides of my body (I understand that some patients only suffer on one side?)
I have had rib resection surgery on both sides (one at a time with a year between operations).
I was most badly affected on the right and had this operation first – My Dr: Mr George Geroulakos (a vascular surgeon) tells me that the way he performed these operations on me was relatively new as I understand common practice was to open up the patient along the collar bone, leaving a clearly visible scar. Mr Geroulakos, instead, went in under my arm so I have very tidy, minimal scars.
The first operation was a fantastic success and it was very strange to suddenly only suffer down one side of my body. Prior to either operation I was very ill as the intense pain had given me other ailments mainly due to the fact that I could never sleep and felt constantly sick.
The second operation, whilst successful to an extent, has not made the dramatic difference that the first op did. I still suffer with symptoms, but not constantly and I have become better aware of the triggers – such as carrying shopping and repetitive movement. I still see Mr G – (I’m off to see him tomorrow in fact). When I am in a lot of pain he gives me an injection in the throat – which I hate – but works as kind of a freezing agent which helps for the day.
Tracey, I am glad that heat helps you – I tried everything heat-wise, and it didn’t help. I would really recommend the surgery – esp if you are in constant pain and mainly relying on drugs and physiotherapy. Physio made me worse – as the repetitive nature of the exercise aggravated the condition. I had acupuncture for a while which helped with the tense muscles in my neck and shoulder. But you become tolerant to it after a while and it stops helping as much. If you would like more details on my doctor, let me know. He operates from different hospitals in London, so is pretty easy to get to. Good luck everyone, and it is great to read other peoples experiences of this condition as I am so tired of even Doctors giving me a blank expression when I mention it!!!
Sarah
I am new to TOS, my doctor thinks that I have it because my pulse dropped when he examined me at his office and he sent me for a vascular flow study but it was negative. So, I guess that I do not have TOS because this test was negative? Can you still have TOS if this test was negative? Does anyone know?
Hi, my name is Carol. I have recently been told I have TOS by one of my Doctor’s who is a D.O.After reading up on TOS it fits with my pain issues. He feels I would benifit from surgery,problem is I live on the east coast of Florida and after talking to Caligirl and reading some old posts there aren’t any good Doctor’s in Florida. I was injured at work in November of 2005 and right before my first fusion I was involved in an auto accident. I have had 4 cervical fusions (3 seperate surgeries) I now have permanent nerve damage in my right arm,constant right arm pain, muscle spasm’s in my neck-shoulder area, My neck will lock and can’t move, headaches that are horrorific (have reaction to pain meds, so I can’t take any) can’t sleep at night(wake up every hour to reposition my neck and yes I bought the handi-dandy posturpedic pillow@ $89.00 which did not help!) and ALOT of pain. My questions for any of you guys are: What kind of doctor diagnosed you, what kinds of tests did they perform to confirm that you have TOS (if any??MRI’s, cat scans). If your new doctor was out-of-state, who did he/she have do your testing? I am at a loss what to do next, who to go see. Any help you could give to me would be SOOOO MUCH appreciated Thank you in Advance and have a peachy day!
Hi Carol – I don’t know if this will be of much help to you, but after reading your post I did identify a few things that fitted with my case – The inability to sleep being the first one – (and for me the most debilitating) Sleep has been a lot easier for me since my operations. But I wanted to give you a suggestion for the muscle spasms and headaches. If you read my earlier post you will know that I have had rib resections on both sides as I had the condition very badly down both sides, I now only suffer on the left. I have suffered with muscle spasms quite badly – there is a reason for this: the damage to the nerve sends pain signals to the brain that then sends the muscles into spasm around the affected area as a form of protection, this then has the opposite effect of giving the thoracic nerve less room and in a catch 22, so it goes on. You need something that not only gets rid of the spasm but relaxes the muscle for long enough for the thoracic nerve to stop sending the pain signal to the brain. Drugs on the whole don’t help a lot with the spasm because they don’t stop this message system. What does help and made a big difference to me was acupuncture – I had it done in a hospital by a physiotherapist (I think that this is important) and after wiping me out for the afternoon, making me very tired (and able to sleep!) It would last for 2-3 days with no spasms at all – this in-turn helped my headaches, as I found that on the whole I could correlate the headaches with tension / spasms in my neck and shoulder. One thing I have also noticed now, is that if I get a headache – for any reason- I now take painkillers straight away as I have learnt that this can trigger spasms and set the whole thing off again.
As to the questions you asked, you need to be seen by a vascular surgeon for an accurate diagnosis. One test you can do yourself tho (esp if you only have symptoms on one side) Is to stand and raise your arms up to shoulder height, palms up and keep them there for as long as you can. This will aggravate the condition if you have TOS but it will be easy to tell. If you have TOS you will not be able to keep the arm there for more than 2 mins, and will straight away start to feel strange sensations such as pins and needles and numbness in your hand, aching / burning in your neck spreading up to your head or down your shoulder blade and or arm. I have seen various vascular surgeons and other specialists and they have all made me do this test. Pre and post op. they did this and timed it to measure the improvement. If you only have symptoms on one side you will really notice a difference between the way the two arms feel. As for pain meds have you tried amitriptiline? I think it is also used for bed wetting bizarrely! but if you can take it, it does help with sleep a little bit. I think the pain when you are so very tired is the worst of all and no amount of fancy pillows help.
Good luck and keep posting to let me know what happens xxx
hey every1 i hope ya’ll are well and finding ur way thru all the b.s. well i have some updates after going to a million dr’s they are still totally split as to what is wrong with me. some say tos (bilateral) some say no, its crazy but i had so much pain in beteween my shoulder blades and then i read about this plant that grows in africa that is supposed to help with pain, inflammation stuff like that, so i said uh huh kuz i’ve tried it all so why bother.. then the other day as i started to order my vitamins from swanson online… i decided to check it out 100 caps $3.49 so i was like yea right but still i decided well i wont be throwing out hundreds of dollars so why not….. and 3days later i have no burning sensations at all in my back and shoulders… i still feel really weak but maybe now that i have alleviated alot of the pain i can start getting stronger!! and it is called DEVIL’S CLAW! please search it out and seriously let me know if it helps, they have been using it for thousands of years and have shown significant results in testing… good luck
[...] Jolene520 posted a noteworthy aricle today onHere’s a small snippetThis was after 18 months spent seeing more than 6 medical specialist(including a DO and Chiroprator),and 3 different PT.s the last of whom was on the ball and sent me to Steven Farrel MD.at UTMC, who sent me to Bernardo Martinez MD., … [...]
here is an article i found most interesting since i am now being told is not the 13 accidents i have been in but now its bkuz my breasts are too large i am only a 38dd and 5ft 155lbs so idts!! good luck ladies
Woman’s benefits withdrawn due to large breasts
Published: 3 Dec 08 07:27 CET
Online: http://www.thelocal.se/16084/20081203/
Dictionary tool Double click on a word to get a translation
A Swedish woman injured in a car accident has had her disability benefits withdrawn after the country’s social insurance agency determined her large bust was to blame for the pain.
“My breasts have been large since I got them. But I didn’t have any problems with pain before the car accident,” Jessica Andersson told the Helsingborgs Dagblad (HD) newspaper.
Andersson learned last week that the Swedish Social Insurance Agency (Försäkringskassan) was cancelling disability payments for whiplash injuries she suffered in a car accident six years ago.
While driving to work, she was hit from behind and has had problems with pain in her neck and shoulders ever since.
But in November, the agency ruled that Andersson’s injuries could no longer be considered work related, resulting in the cancellation of her monthly work-related disability payments of 7,700 kronor ($934).
The agency’s decision comes following an assessment from a doctor suggesting that Andersson could return to work if she had breast reduction surgery.
“I’m 99.9 percent sure that it wouldn’t make a difference if I had surgery on by breasts. It’s not ideal to have neck injuries and at the same time have heavy breasts, I understand that. But the injury would still be there after an operation,” said Andersson.
The same doctor had previously diagnosed Andersson as having psychiatric problems, a diagnosis which she successfully appealed.
Andersson is currently considering an appeal of the ruling to have her payments withdrawn.
Hi, I have been diagnosed with TOS after a whiplash injury when I fell down cement stairs. My doctor sent me for an x-ray of neck and found I have 2 extra ribs that contributes to tos. I have experienced both vascular systems – went to emerg because I was sure I was having a heart attack but er said it was the tos, and I also suffer from troubles with my hand and fingers – tinging clumsy, numb. I work as a secretary (parttim now because full time was killng me). Any one have any idea of the likelihood of being able to return to secretarial work full time. I am a single mom of 2 little boys and need to work to support us. Any suggestions on employment would be appreciated.
Thank you
hi people, i am also goin thru the physical and emotional turmoil of TOS. After 4 years I am now back at the idea of sugery. i would like to know as much as possible about alternative methods to ease the pain caused by scalene fibrous band. theres definitely compression as my hand is numb and has been for years but i have lost faith in the physio who doesnt understand that i cant handle shoulder strengthening exercises! aaaah. wot brachial plexus tests cou;d reveal the cause more in depth. have had 2 neck mris, shoulder mri, emg and chest xray – no extra rib. lots of support from me in england xx
i have tos 6yrs. just had five botox injections. I hurt so bad i pass out and blackout. can’t work,sleep,care for my child. I am waiting for my hearing for ss disability. 30 yrs old, 5 year old son, I hurt and will write more when i can.
hey guys an update here.. i found a new dr again.. and he sent me 4 the botox shots.. i had 4 of them 2 in my neck and 2 in my pec muscles.. it hurt but i could tolerate it.. the dr said i wouldnt feel a differnce 4 2wks. its been a week & still have pain so, i will ket u guys kno whats next..
Jessica would love to know how you are feeling now. I had my first botox shot on June 11th on my left side and went in for my right side on June 18th. So far the pain is worse. I keep hoping the relief will kick in soon. Anyone else have experience with the botox shot and can you tell me how long it took to get relief?
I have been diagnosed with TOS back in 1990. For the first few years I tried the Chiropractor, exercise, water aerobics, Neurosurgeon, and Neurologist. It was horrendeous experience in the beginning. Then at some point after watching my posture, after sleeping several years with a cervical pillow I have been able to minimize the pain. After all this time, I have recently began to see an increase again in my TOS. If I stay on my rightside all night I wake up with a horrendous squezzing pain that last for hours. I have been having an increase in my headaches. Which I have been headache free since I’ve been on Hypertension medication. The reason why I am writing this is to encourage you to make the lifestyle changes that is needed to correct the problem. When it flares up then stop what you are doing and listen to your body. I also work on using meditation/body scan to see if I can focus on the area and create a biofeedback to ignore the affected area. I have been suffering for a very long time, a neurologist had told me that this is something that I will need to live with for the rest of my life. And for the most part I have. And apparently my body is telling me it’s time for some changes because it is getting more and more evident that the symptoms are flaring back up. For pain management I take Cyclobenzaprine, Meloxicam. And I continue to sleep with a cervical pillow.
update, I had surgery 9-8-08 and was doing good so I thought, but the symptoms came back worse than they were before. Don’t know if I was so numb that it took awhile to tell things were back or if it is scar tissue giving me problems.
Hello, It is a nice to hear about other people’s condition. I have been in severe pain for 29 years now and have been trying to find a diagnosis for my condition. I have been to many and I mean many doctors trying to find that special doctor who would really listen to me and was familiar with my symptoms. I live in a city where doctors would think I was crazy and my pain was not real or would see I had atrophy in my chest wall and would not know what was causing. They ruled it as inflammation. I finally decided to go on the internet to research doctors who are familiar with TOS as this is what I diagnosed myself with based on my symptoms. I had a friend who had the same symtoms and had surgery for TOS and is pain free. I found Dr Pearce in Chicago and traveled twice 14 hours one way to see him. He is wonderful! He confirmed with vascular testing that I indeed have TOS. He wanted me to do research on surgery since I have had many years of therapy and taken medication that did not improve my condition. I am very blessed that after all this time that I have not had a blood clot as my CT scan showed the rib to be blocking the vessel. I am truly greatful to Dr Pearce as he really showed me compassion and concern with finding out what was wrong. I even received a call, not his nurse or anyone else but from him with a referral to a nuerologist closer to home as I also have disc/nerve issues too. I have been resesrching surgery and reading blogs as my condition has reached this point. I want to have Dr Pearce handle my surgery but my husband has some concerns with me traveling this far after surgery. My husband tells me it is my decision but is worried in case I need to see the doc in a hurry that I cannot get to Chicago fast enough. I do not fly so we will have to drive. I went to Emory University to see another doctor who specializes in TOS too. He is very knowledgeable too with TOS. Now I am trying to decide where to have my surgery. Any thoughts?
hey doug sorry my computer went down and i had to wait for a new 1 to come in… i received no relief at all from the botox shots… if anything it made my neck on the right side worse for almost 2wks,, idk what to do from here except surgery i have tried it all, but who knows.. if u need to personally email me jlounge69 @ comcast.net
Hi,I thought I’d just note that the chapter on TOS in Travell & Simons’ Myofascial Pain and Dysfunction: The Trigger Point Manual is one of the best things I’ve seen on the subject, really a must read. If you think that trigger points are a cause or contributor to your TOS, I’d also recommend the chapter on Myofascial Pain Syndrome in Weiner’s Pain Management. Both of these can be found at a good medical library, and they are also both in Google Books, in expurgated versions. I’ve found the most effective product for self-treating trigger points to be the Fenix Pain system (although it’s somewhat awkward to use; for example, to work on the trigger points in my chest I end up turning it upside down and setting a large dictionary on it). Anyway, hope this helps.
…and also useful for trigger points: Bonnie Prudden’s Myotherapy (although it took me some months to realize that the “compass” technique she like so much doesn’t seem so good for self-treatment), and a super ball.