My intro
 

OK, I have not been officially diagnosed. But I have had these symptoms for 6 years. I have been on anti-inflammation drugs and muscle relaxers this whole time. I have tried Chiropractors, acupuncture, and Physical Therapy, which have all made my symptoms worse. I have been told all types of thing from anxiety to heartburn. I have seen many doctors. All my test come out normal. I recently had chest pain (which is a common symptom of TOS) and had a heart work up with no problems there.

Here are my most common syptoms off the top of my head:
I have chronic headache in the back of the head.
choking or strangling feeling in neck
pins and needles feeling in upper chest and neck
numbness in hands when driving, blow drying hair, etc.
Shortness of breath feeling
Pain in neck, shoulders, and upper back and now chest
eye pain/pressure

I was getting buy taking one muscle relaxer a day. Now I have to take 2 to 3 a day to function properly along with Ibuprofen. If stop one of them I am bed ridden the next day.

I need to find a doctor that will listen to me. My pain is interfering with my life and I am sick of it. I have 5 children and some days I can't get out of bed when my symptoms are bad.

So I am reading post here and doing research. I am a nurse, so I find it helpful. Finding out about TOS is actually giving me hope that maybe I can improve my quality of life, if I could just get a doctor to listen to me.

You'll need to see a doc who knows TOS really well in the first place. If you already have, try a 2nd.

Chiro and PT helped me, but as with all professions, the skill level and approach of the professionals varies. You may need to keep trying until you find someone who works for you.

Good luck.

My pain
 

Hi, I'm Sarah and I hav thoracic outlet syndrome.
About 6 months after a carpal tunnel surgery on my right wrist, I began to experience pain in the wrist but the doctors immediately scared me with a diagnosis of possible rsd. The pain and tingling spread into my hand and up to my shoulders. Within a year of the pain returning to my right wrist, both arms and hands were affected. Then, after the 4 gangliana nerve blocks failed, my doc says "I'm sorry, I just don't know what to do." Needless to say, I was very angry with doctors, I began to think I was crazy, and I wanted to give up.
I got a diagnosis in Nov. of '10 of bilateral TOS- Two and a half years after the symptoms began. In May, I got a left 1st rib resection, a pectoral minor reduction and a scalenectomy.
No real relief. The pt is increasing my strength but the pain just continues on.
Good luck to newcomers- just keep on.. its really difficult but worth it

My TOS History
 

Hi, I'm Drake, 23years old. Sorry for my bad english. Here is my TOS history, I went to chiropractor past six/seven months ago, it was helped a bit, but the pain is still coming back, it's seriously disturbing me, and I didn't my what is my problem and I did the physiotherapy also recommended by some doctors, that also the same things. Actually the pain was being started past one year and now finally one of the doctor (Among Ortho Specialists), hand surgeon, diagnosed me that I'm suffering TOS.

Mine is so bad, my shoulder (right) is dropping, and getting winged scapula. Even can't talk over the phone by holding with my right hand. I raise my hand to over my head position, my shoulder is cracking, my right hand can't even touch to my lower back, and my trapezius muscle (right) getting weak, my jaw become dislocated more often, stiff-neck due to my scalene muscle tightness. Of course, numbness, tingling feeling at my index finger, fourth finger and shoulder. Now I'm waiting for the surgery. Hopefully it can cure my TOS fully.

Intro
 

Hi Everyone! I've been reading through the posts for a few months and felt it was time to introduce myself. I've had worsening, progressive left arm, neck and back pain for about 4 years with left arm numbness and tingling down the lateral arm into my 4 and 5th fingers.

I was shuffled around to orthopedic docs who immediately wanted to do a diskectomy due to herniation at C5-C6 and C6-C7. At the time I was a 27 year old mother to a 2 year old and infant and was completing my phd so I said no way! I was able to manage the pain with intermittent steroid tapers and ibuprofen. It has gotten worse and worse through the years and I've had physical therapy and epidural injections for what I thought was disc issue.

However, I've relocated up to PA (have been in NC for the past 8 years) and things really took a turn for the worse with the numbness waking me up from sleeping (which I don't do so well anyway), not being able to hold a brush to do my hair (I'm also left handed) and not being able to hold my kiddos. Same old story, my new primary care doc sent me for an MRI and to an ortho. Same MRI results and ortho sent me for pt. This is where everything changed. On the initial eval the pt said immediately, I don't think this is disc related, I think you have TOS and he said I'm a poster child for pec minor syndrome.

He started treating me with nerve glides, ART, etc and there was improvement at times but not a whole lot. Sent me back to the doc who sent me for an EMG which was negative. Back to the doc for a follow up and he reiterated the need for diskectomy. Then he decided to do the Adson's test and it was positive. So I went to the vascular today and she was WONDERFUL! She specializes in TOS and was very realistic with me, took her time and it was refreshing to see someone who understood and didn't make feel crazy when I started crying in her office.

So...next steps, x-ray to look for the cervical ribs, pain management, more pt, no more training for my half marathons and triathlons :(

I'd like to thank you all for all of your posts, it's so nice to find people who understand and reading them over the past few months has really made a difference!

Also, if anyone knows any physical therapists in the southeast PA, Delaware area that have particular experience with TOS I'd love to hear about it!

Hello & Welcome,

I hope each of you make a thread/post on the main TOS forum when you return, so we can say 'hi" and get to know you better..:)
you can copy /paste your post from here if you like & to save typing..

Here is the link to start a New Thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL

Early on, I had similar symptoms regarding the arm numbness and 4th and 5th fingers. I did Egoscue from books religiously early on and the forearm and finger numbness was the first thing that subsided.

These days I'm doing PT and an eclectic mix of stretches and exercises from PT books and my PT. I've made enough progress, I don't think I'll need the surgery, but I'm also lucky that my symptomatic side is not my dominant hand.

Does your left shoulder sit lower than the right when you stand square in front of the mirror with your arms at your sides?

Do let us know how things go. We all benefit by sharing information.

How did you know that you had pec minor issues? is there a test?

My left shoulder does indeed sit lower than my right and when lying on my back my left shoulder is off the table considerably more than my right. There were definitely stretches that my PT did that targeted the pec minor that really worked to open things up - I've had my husband try to do the same ones because I can't do them by myself, I need a passive stretch for those.

My new TOS doc gave me a script for more PT if I want it and I'm debating it. I think I'd like to find a place with hydrotherapy but I really liked my last PT so I'm torn. Also, my semester is starting up (I'm a professor at a local university) and I'm going to be less able to get to therapy 3x/week. Sigh.

I called for the scalene block today and had the xray so at least things are moving in the right direction....it's only been 4 years :D

My TOS was diagnosed independently by first a chiro and then later a vascular MD. My pec minor syndrome is self diagnosed based on three things:

1) The paragraph "In 2005 we became aware of a large number of patients who, in addition to these symptoms, also had pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade and in the arm pit. Until recently it was thought that these symptoms were due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome." at http://www.ecentral.com/members/rsanders/ matches my symptoms

2) My PT has found my pec minor on the symptomatic side is tight. (She also agreed with pec minor syndrome when I showed her the above paragraph.)

3) When I do pec minor stretches, I can feel the one on the symptomatic side is abnormally tight. Almost like it "catches".

I had time to place copies of the newest members posts here on the main TOS forum thread list.


It works best to carry on the conversations on those threads.:)

here is the main TOS thread list- you can find your threads there in the list
http://neurotalk.psychcentral.com/forum24.html


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

symptoms hard to live with
 

Hi

My symptoms are very hard to live with. Dr diagnosed TOS but I don't have any venous impingement.

I have svere muscles spasms in neck such that if I recline my head back a little or try to lie back it feels like I am being strangled. My nights are spent sitting up in recliner with very little sleep.

They trigger off daily migraines as well. I also have have been mostly bed or housebound for 30 years with ME/CFS and I think my bad posture from this has caused the TOS.

I do wonder if I have TOS or just muscle spasms.

I have been having physiotherapy, massage, chiropractic and will try acupuncture next. The scalene stretches make it worse.

Feeling desperate as I can't tolerate many medications which may help. Its been interesting to read of everyones experiences.

Loranne

Tos
 

Hi my first time here I'm from South Africa Cape Town . I'm 45 was in an work related m v a in 2005 had a neck fusion c4 c5 in 2006 had ongoing PT for 2yrs. My neck could still not move around a lot ,lame weakness feeling in my left arm. When I would carry anything even a book I would get a pulling from my neck down my arm. The dr said operation successful but my body said otherwise. Then in 2008 I was rear ended at a traffic light and my symptoms got worst, I had a shoulder op after a year of PT. Then I got a frozen shoulder which was a nightmare every for almost 2yrs ,had a manipulation of the arm/shoulder under anesthesia and countless hrs of PT everyday for abt 3mnths. I would cry like a baby at these session. I was discharge eventually coz PT just did not help for me. In 2011 I was diagnosed with possible TOS. Every day living was hell when I had to get up for work. My morning would start like this, wake up @ 04h30 lay and recover in bed coz my head would be heavy at the back , neck would be stiff, fingers pins and needles. 05:30 I would eventually manage to get out of bed most of the time it would be with my husbands help. Then I would sit a while in an armchair. Now I would get ready for work. Some mornings I could not get done on my own and my husband or kids would assist me , this made me vey depressed ,getting to work would be another battle, public transport was horrific , coz it was a very bumpy ride. I would get to work eat and have a heap full of pain and muscle meds. Now I'm at home for 5mnths and life is much better if I don't overdo. My mindset is also much better although I have my off days but the antidepressants do help a lot and if you have a strong support. My pain,lame tired feeling in my arms, heavyness in my head pins and needles in my hands and the feeling of insects crawling in my arms is still here with me everyday my life is a little easier. We will see what my outcome is for disability in July 2012. Sorry I tried to give a short version of what I have. Hope to hear from you guys thanks

Hello! I've been reading this forum for weeks now. I've had TOS for over 30 years. I've been to every possible type of doctor who could find no reason for the pain I had. Over the holidays I was having arm spasms, so I did some surfing and came up with a chart that showed exactly where I'd been hurting all these years. I looked into TOS, gave Dr. Dean Donohue a call on the off chance that this is what I had, and went in for a visit. After going to physical therapy almost every other year of my life and feeling like a complete crazy person, he found that my first ribs have congenital abnormalities that are likely the cause of my pain.

I'm nervous about pursuing surgery, especially with two kids and a husband who isn't a great caregiver. Being home bound and unable to drive also seems pretty tough. But, the pain is dreadful and has affected my quality of life.

I swim almost daily and do pilates (not well at all, but I enjoy it). I worry that lying around for a few months will result in depression, which I'd like to avoid.

Anyway, that's all I've got! Thanks for listening and thanks for sharing your stories which have helped. :)

Post rib resection/decompression at 4 weeks
 

On Jan 13, I had surgery for right side TOS. I am 43 years old and teach Kindergarten, but the pain from TOS made it impossible to work so I took this school year off to try to get my symptoms under control. I was scared to death to have this procedure, especially after reading some of the posts on these forums. My symptoms started 5 years ago, but it wasn't until 18 months ago that I got the TOS diagnosis from a neurosurgeon. I went the conservative route for 16 months with symptoms getting worse and finally decided on surgery. I am lucky enough to live 25 miles away from 2 excellent neurosurgeons who each perform an average of 4 rib resections per month, so I was in experienced hands. My surgery was performed by Lynn Gaufin in Provo Utah. Before the surgery I was diagnosed with neurogenic TOS, however during the surgery the surgeon found that the subclavian artery and vein were also being impinged by the first rib, and that there was excessive scarring between the scalenus mediums and brachial plexus. The first rib was extremely wide and acted as a shelf with the artery running across it and then dropping off. As the Dr said, it was a real mess in there!The first week post surgery was rough, especially since I had 2 allergic reactions to 2 different painkillers. Last week I decided to just do 3200 mg ibuprofen and lots of heat and ice. Today was my 4 week post op appt. and I am doing pretty good. The Dr had me do exercises starting on day 3 and now I will start on a couple weeks of PT to help stretch the neck. I can already feel a positive difference and while I know I have a ways to go until I feel like myself I am so glad I did this!

help
 

Hi, I am new here and just read your posts. I too have TOS and am in desperate need of a Dr. that works with Blue Cross. I have been seeing Dr. Jordan but I can't afford him. Do you have any suggestions? I hope you are doing better now.
Thank you, Mitsy

TOS caused by extra set of ribs
 

I have an extra set of ribs coming off the first rib, because my body did not have space for these ribs the right side pushed into the subclavian artery and caused an aneurism which sent blood clots into my right arm and hand. No accident caused it to happen just the extra rib pushing for space. I was studying abroad so I was not at home to get anything checked out and during this period of time my arm and hand slowly went from tingling and my fingers turning white to looking like I had a stroke. The blood clots were in every vein and artery in my arm and hand. It killed the radial artery leading to my thumb and hand area which had to be replaced with a vein in my leg and if that did not work I would have lost my right arm up to my elbow. They then provided to pull the clots out of all the veins and arteries. Extreme nerve damage was done because everything had gotten to the worst possible point before the surgeries. They had to take a vein from my other leg to put around the aneurism because it was to tangled in with everything in that area that could cause more damage which also meant the extra rib could not be taken out, but it has done all the damage it can on the right side so they say! I am about 7 months out of the surgeries and still feel the healing process at work .

Wow! Congrats on getting the arm saved and getting the surgery you needed. Thanks for sharing your story.

Hi again,
 

I wrote you a few weeks ago regarding Dr.'s and you sent me the link of them. I noticed you live in L.A. I live in Calabasas and am trying to find a Dr. I can trust. So far I have been to over a dozen. Would you mind telling me who did you TOS angiogram and then surgery? Are you happy with the results? I was seeing Dr. Jordan but can't afford him anymore, I have to go to a Blue Cross provider. Thank you so much for all of your help and info.

Best,mitsy

Hey Im Laura, I live in Ireland and have recently been diagnosed with TOS.
I'm only 18 and have no history of injury..my symptoms started over 6 months ago; left hand EXTREME weakness, coldness and my arm is very discoloured, pain across my shoulder blade and down my neck.
Spent a week in hospital after I was sent in with a possible blood clot : clear MRI and nerve conduction studies showed slight ulnar nerve entrapment at the elbow ( could be present in normal people i was told)
sent home with diagnosis of "possibel trapped nerve" and NO treatment.

Then and osteopath diagnosed an elevated first rib and manipulated it and all my symptoms disappeared- MIRACLE!!
THis continued to happen about 5 more times, and I returned to the osteopath every time this happened!

A month ago it got progressively worse and my osteopath told me he could do no more for me and that I should go the medical route AGAIN!
Went to A&E and finally saw a vascular surgeon.. I had a Doppler scan done and that shows my arteries are healthy thank god..but could not tell if it was being compressed at the thoracic outlet with just an ultrasound,
he found a loss of radial pulse at 180 degrees and put me on LYRICA, ASPIRIN & a vasodilator PRAXILENE..
Saw his colleague two weeks later and he finally officially diagnosed me with TOS.- but he now believes it is NEUROGENIC which is really confusing me.. my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist :( and it is like a block of ice.. I really believe I am suffering with the symptoms of arterial TOS..

Being admitted next week for an MRI to check for extra rib ( osteopath cant feel one though) CT to check the artery and chest x rays etc.

Im so glad to find people that know how debilitating this condition is.. I cant write, tie my trousers, tie up my hair etc..basic daily activities. And as for the Lyrica..that deserves its own thread!!!
Sorry this is so long..

Sounds like your case is clearer than most. I also had the disappointing hospital visit where they could neither diagnose nor treat me. Later I read in a paper by a vascular surgeon that TOS is under-diagnosed in emergency rooms. I believe it!

One thing you have to watch out for is that the longer your symptoms go on, the more damage is being done to your body. I think you should be going to your osteopath on a semi-regular basis to "keep things at bay" until you get a better fix.

I eventually learned to do neck stretches and a first rib adjustment that mostly accomplish what your osteopath does. Now I can fix myself up within minutes instead of waiting for an appointment. Consequently, my secondary symptoms have gone down a lot.

You can start here to see what I'm doing:
http://neurotalk.psychcentral.com/post853563-17.html

Good luck!

Thanks for your help, I will definitely try those stretches! where did you learn how to do a 1st rib manipulation? I have been told to avoid that just until all the tests are done because knowing my luck all the tests would show up negative then b/c of the temporary relief I get from my osteopath.

I first visited him in October and got relief until December. Thought it was a once off thing that wouldnt occur again. By the end of Jan it got to a point where I was having 3 app's a week and getting a 1st rib mobilisation each time. He felt there was "something more going on" and that I should get the Doppler done etc as he felt he could do no more for me, unless he moved in!!!!

I would greatly appreciate your opinion on this, giving your knowledge of TOS.Is it possible for NTOS to cause extreme discolouration and coldness? I was aware it could cause some amount but not to the extent that I have? ( arm looks dead and extremely cold)
I noticed a difference in pain levels when I was on aspirin and praxilene and lyrica makes no difference to the pain whatsoever but my consultant doesnt think it is vascular TOS and is leaning more towards NTOS, whereas my osteopath is adamant the subclavian artery is being compressed??

From reading the posts on here I have learned that even though this feels like it has been going on forever and I have been messed around so much, that it is in fact a quite straightforward story in comparison to other TOS sufferers,( leaving out all the complicated bits of the story that came to dead ends that is). My life has been put on hold the last couple of months as I cant do anything in college without the use of my arm plus the pain obviously. Vascular TOS seems to have a better treatment outcome so I actually "hope" that I have an extra rib that can be removed and then all this be over,rather than finding no cause.Here's hoping.[/B]

There is a "first rib mobilization" technique on a web page that I think I posted in that thread. You can also search google and youtube for that term. I also made up one myself which I describe in that thread.

I understand what you're saying about the testing.

Re: coldness, I've heard both chiros and MDs say that's nerves, but I don't see how it couldn't also be artery.

I wish there was better and more standardized testing for TOS. I don't care if it's complicated. Make a flowchart, medical community. It's 2012.

so glad I found this. I'm sure my story is similar to others: after years of symptoms and dealing with pain and doctors telling me I had everything (or nothing) under the sun, I was finally referred to a vascular surgeon whom I saw last week. Today we did a scalene block... I'm worried since so far my smyptoms haven't gone away while I have heard fantastic stories of people feeling like normal... we'll see what happens.
Happy I found this group! can't wait to learn more and talk to others about this. I think that is the hardest thing sometimes.

Leslie

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.

And it works best to carry on conversations on the main TOS forum section.:)

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


New members can make a new threadfor themselves here-
http://neurotalk.psychcentral.com/ne...newthread&f=24

1st Rib Resection After Tumour Removal
 

Hello everybody,

I am a 52 yo male and i am pleased to have found this wonderful forum that I wish I had found some time ago. I live in Australia and we have the same issues with access to medical treatments as other countries, so you find good professionals, you want to hang on to them!

My TOS was diagnosed late 2010 after i noticed periodic slashing pain in the lower thoracic spine. I was ultimately diagnosed with a very large tumour in my neck (RHS) that had grown amongst the nerves, muscles, tendons and had compressed all the tissue in the right thoracic outlet area.

This resulted in the tingling in the fingers, cold and painful arm, collapsed shoulder and it was twisting my spine. Needles to say, I became quite precious at work, and everywhere else.

Surgery was successful but five months later scar tissue has grown and created much the same symptoms as before, and now my surgeon says a 1st rib resection is his next step, along with clearing the scar tissue as best he can.

I have been resisting this step until now, and after finding this forum, I now have the confidence to go ahead with it, as I do not feel so alone anymore.

I look forward to following all the posts of the most recent surgeries and happy to post my own experiences if anyone would like to follow.

Blurto, welcome

Very unique case. Is your TOS is just on one side? I'm looking forward to following your progress.

Hello
 

Hi, I have been reading these posts for a couple of months now and had trouble getting on this site from my home computers**.Finally I went to the Library to join.

I have been treating a disc bulge and spinal stenosis for 7 months with no results and finally got a diagnosis of NTOS a couple of months ago.I work with my arm so I have been unable to work for 8 months. I just had botox injections a week 1/2 ago and waiting for the results.I am in L.A. and have seen the same Dr's etc as many of the people on here so am looking forward to the exchange!

tos and si joint strain
 

hi im laurie. injured 4 years ago at work, off for two. TOS caused me to adopt a lean to compensate for not being able to support my shoulder and i a strain of my sacroilliac joint. WC sceduled surgical consult for TOS but my primary doc is telling me never to allow them to operate! Confused as how to proceed! I just want my life back:eek:



I copied this to the main section of the TOS forum for you -
here is the link to it- Jo*mar
http://neurotalk.psychcentral.com/thread167776.html

TOS bilateral since 1995
 

I am a 45 man, I started having neck pain back in 1995 while in the US Navy. The navy dit xrays and mri's and all they thought I had was a vertibre in my neck that was not moving correctly. The did PT and traction on my neck. I also started to get tingling and "numbness" in my ring and little finger on both hands.

I got out of the USN in 2000 and filed for disability compensation with the Veterans Administration. I was initial rated at 20% due to the neck stiffness and Arthritis in my neck.

I was seeing a xray done for a normal work physical around 2002 and the xray technician came back in the room after taking my xray and asked if I had staves in my collar. She did not ask my to take off my shirt for the xray. We checked and saw that I did not have staves in the collar. I took a copy of the xray to the VA doctors and they decided that I had TOS due to extra 1st rib bilaterially.

The symtoms tingling and numbness and limited neck rotation at times, kept getting worse, until my doctor and I decided to remove the right 1 st rib to give the nerves more room in 2005. After the 2 hour surgery the doctor told me and my family that the nerve did not go straight through the muscles like it suppose to, rather is is wrapped all in and around the nerve. I had a huge improvement on my right arm. I only have problems with my right arm if I try and do something above horizontal with the right arm.

After I had this surgery my left arm starting to bother me more and more. numbness, burning, feeling like it was asleep for months on end. So in 2007 I decided to have the left 1st rib removed. I had relief for about a month then it came back hard. I then read an article about how the minor pectorial muscle could be pinching the nerve, I talked to my pain doctor and he gave me a shot in the mucle and the pain went away almost instantly. So I had my left minor pectorial muscle detached in 2009. I had relief for about 3 months, then the symptoms started coming back more and more. My right arm is still almost normal, but weak, my left arm hurts me almost of the time now.

I have also developed athritis in both shoulders due to the not moving my shoulders fully.

So I have 3 scars on my shoulders and chest from the surgeries and stll in alot of pain. I can not let my arms stay in one position very long or they start aching from the athritis, but If I move them to much the TOS kicks in. Especially the left. For the past 5 year the majority of the work I do has been on the computer so that make everything worse. I have a request for increase in my disability from the VA, and I am starting to think, if it is increase of just giving up working and trying to survive this pain. I cannot stand not being busy so If I do this it will be a big change. I am sitting here, almost in tears because my left are is burning and I had my arm just barely touching a notepad and I had to move the notepad cause it felt like a knife cutting my forearm.

sorry if this was a long post, had to get some of this off my chest. which hurts all the time from the TOS and surgeries. I have routine stress tests annually and had a left and right heart cath this year cause I have two of the symptoms of a heart attach almost daily.

Mark.

moltra, I feel your pain. I am 43yr old with bilateral TOS. I had the surgery on the left side sept 2011 and I am still feeling the pain and burning. I was a police officer and very active. I am still waiting for my disability, which I filed 6 months ago. I am told my hearing is April 25th. I have found it is a fine line between using the arm a little or to much before symptoms kick off. The nights have been the worst. good luck to you.

Mark - Believe me, we all feel what you are going through in one way or another. The forum is a good place to touch base with others dealing with similar issues.

Waiting forever in Toronto, Canada
 

Hello fellow TOS sufferers:

I am new to the board. Was diagnosed in November of 2011, but really started showing symtoms in May of 2011 -- ended up waking up out of the blue one morning with a swollen right hand all the way up to my elbow. Within a couple days I was diagnosed at the hospital with a blood clot and the rest of the follow ups led me to my diagnosis several months later of venous thoracic outlet syndrome. Apparantly, there is only ONE specialist in Toronto who performs this surgery and he is currently transferring these skills to another surgeon (and will no longer be doing this type of surgery). As a result, I have been waiting and waiting and waiting....been told I need surgery, but STILL have yet to meet with the new surgeon who will be doing it. How frustrating! Anyone else from Toronto on this message board, or anyone else have similar experience?

Thanks everyone!

New at this
 

I've never used a site like this before. I'm not sure where to start. I have TOS. I was diagnosed by Dr. Dean Donahue at Mass General. He is wonderful! However I live in Indiana and cannot drive 17hrs every time I need to see him. I am now talking to the Thoracic Outlet Syndrome Center in St Louis, MO. My first appointment with them is May 30th. Anyone know anything about them?

I have been working with a Chiropractor who has a masseuse on staff. They have been amazing. I can function again. I was able to do this instead of the botox treatments. Not a fan of those! However my chiro and I believe we have come as far as we can on that front, and I am now thinking surgery will be necessary. I'm very scared. I have not been able to find enough info on what happens after surgery.....

I'm so glad I found this community.

Jess

sealeg & Jlorainne, Hello & welcome.

I placed copies of your posts on the main TOS threads section , so members can say hello and offer support.
Here is the link -
http://neurotalk.psychcentral.com/forum24.html

Introduction
 

Hey everybody I'm new to the forum. This seems to be one of the only forums that I can find that is fairly active on the subject of TOS so I figured I would sign up and tell you all a little about my history. In march of 2011 I started having aching pains in my left shoulder from out of nowhere and swelling in my arm, I went to a local clinic and was told it might be something vascular and that I needed to go to the ER immediately. After spending a long night in the ER and after an ultrasound they discovered a clot in my subclavian vein. I was promplty started on lovenox and coumadin and spent a week in the hospital, after which I was released and told to keep taking coumadin and follow up with my doctor. Fast foward to August 2011, I finally got an appointment with a vascular surgeon at UCLA medical center named Dr. Hugh Gelabert who has expertise in the area of TOS and Paget Schroetter's. After some exams I was diagnosed with Paget Schroetter's syndrome and told it was likely due to physical strain that had exacerbated the condition I already had and never knew. On Sept 29 2011 I went in for first rib resection surgery (transaxillary) and 2 weeks after had a venogram and venoplasty done on the subclavian vein. I am currently having some issues with the right side and am having a venogram done tomorrow to see if the same conditions exists there. If anybody has any questions in regards to the surgery, recovery, or any other related things I would be happy to answer them.

John

Wow. You have described my exact experience. In fact, I am not thinking that at times, I feel similar symtoms on my left side, but hard to tell if I am being paranoid. I will raise this with my surgeon when I finally get an appointment. I notice I have a bulging vein on both arms (where previously I only had it on the affected side/arm). In addition, I feel the same chest pain on the left side that had only been exclusive to my right/affected side. Good thing I am on coumadin or I would be more concerned. Will be interesting to see the outcome once I have the opportunity to investigate. Good luck with your journey.

Update!
 

I just had the venogram on my right arm done yesterday. There is very minimal narrowing in the subclavian vein and the doctor gave me a clean bill of health. An interesting thing that I have noted over the past few months is when I'm doing overhead work my left arm gets less fatigue and cramping compared to my right. It has still only been 7 months since the surgery but I could venture to say it was a success (knock on wood).

Diagnosed
 

Hi,
Diagnosed with Paget Schroetter while in hospital with DVT. Female office worker took dip in pool which somehow triggered it and now her whole life is changed. Age 43. Trying to learn more about surgery and various options for treatment.

New Here
 

Hello,

I had rotator cuff, labrum, frozen shoulder surgery in October of 2011. After the surgery, I woke with a numb hand. It was believed to be related to the pain pump, then I was told carpal tunnel and workman's comp said they were not treating my hand injury.

Seeing a physiologist and ortho, I was diagnosed with a brachial plexus injury. Although the constant tingling diminished in my hand, it still just doesn't feel right. My arm is tired feeling, I have tingling from my shoulder to hand in certain positions and EMG shows nerve damage and muscle atrophy. And the physiologist feels it is TOS. I had a vascular study yesterday and it showed issues on my left side although all symptoms are on the right side.

Not sure what happens from here, waiting to hear from doctor and what options there are for treatment. Any suggestions would be appreciated.