New member=MelissaLH- Trying to make up my mind about having the surgery
 

Do you think only one year of trying physical therapy is sufficient to demonstrate the need for TOS surgery?

In the summer of 2005 I was rear-ended and sustained a whiplash/hyperextension injury. I just had a lot of neck and shoulder pain for about three months, and then for the next year I had periodic problems with my neck muscles locking up any time I would overextend myself such as with exercise or just trying on too many shirts at a clothing store!

I was diagnosed with thoracic outlet syndrome in the spring of 2006 when I suddenly developed what was thought to be wrist tendinitis bilaterally. Treating the wrists alone didn't help, and strengthening my upper body only made my arm and hand pain worse. By resting my now spindly upper body, I have managed to get my hand pain under control, though any time I try to build upper body strength I'm spiraled right back into severe pain. I do see a physical therapist for myofascial release and craniosacral work, which helps somewhat, but doesn't help me strength-wise. I haven't been able to type full force for a year, though I do have to type a bit when my speech recognition software doesn't work properly (I have to Dragon NaturallySpeaking version 8). I can't drive, or grasp for long periods of time. I have finally been able to do the dishes for the last couple months, and I'm just proud of that! My hands hurt every day regardless, and a lot depends on which way my head is pointing or leaning.

I went to see a thoracic outlet specialist last week and he diagnosed me with arterial and veinous TOS of my left arm and arterial in the right, both of which meaning that I do have a nerve compression which seems to be my main complaint. He suggested having my first ribs remove as well as a scalene muscle severed on both sides. I'm really afraid of the surgery because of the recovery time, it seems from a lot of people's posts that it takes a LONG time and I have to get back to college. Any advice? I might post my questions elsewhere, just in case this doesn't get read. Thank you!

Hi Melissa,
Welcome to NeuroTalk,

I copied this from your intro above so the members can chime in on your questions.

It's nice to see that you are having some improvements.

I hAD A SEVERE REPETITIVE STRAIN - SORRY ABOUT THE CAPS KEY!-
mine was dx'd as bilat wrist strain at the beginning of that.
After some good amount of recovery I was re injured - and then after more fairly good PT, I was stuck at a certain level of chronic injury.
-So I decided to go search on my own & I found very helpful adv.PT & a chiro- they did the best evaluations so far & believed it was TOS, and the treatments they each did for me have been the most helpful.
Between the both of them - and my self care that i do- I am only at a mild but chronic stage now.
my worst problem is fine finger coordination { hit wrong keys often!}

you story sounded so similar to mine in many ways I had to tell you- my worst time of symptoms lasted for 2 + yrs.
I still could grip but had lost some of the strength for awhile- but it did come back.

Have you had any advanced or expert phy therapy??

I would really give that a good shot first before agreeing to surgery.
Sharon Butlers stretches, posture work, ...
have you had an MRI and xray to check for any other possibles?
{c spine inj? or extra cervie rib?}

Did you see the other stickys by the intro thread? tons of good help in those

Venous vs. Neurogenic
 

Can you clear something up for us? You say the Dr said you have arterial and venous TOS, but then you state you have nerve compression - while there may be some nerve compression going along with vascular (venous and arterial TOS, the presence of vascular TOS does NOT mean that nerve compression is the main problem. In fact, if you have positive findings for v/a TOS, then it's most likely you have a vascular form of TOS.

It's the neurogenic, or nerve-type, TOS patients, who generally don't show positive for vascular problems, and normal EMG/NCV testing of nerves, because it is not specific enough to test the sensory nerves or small motor nerves affected, who have a much harder time getting a diagnosis.

If you do have vascular TOS, it is important to know how severe it is. Your veins and arteries can be damaged from compression. You may be at risk for blood clots. You may have poor blood flow. Either form of vascular TOS can be quite serious.

It does not sound to me like your PT knows about proper therapy for TOS. As long as pain is present, strengthening should be avoided - it will ONLY make things worse. Resting from unnecessary activities is good, but therapy should only include such as nerve glides, ultrasound, massage - if you can tolerate - and not deep muscle, gentle stretches, posture exercises. You may do these for weeks or months before you see pain decrease - your nerves are highly irritated, and you are continuing to keep them irritated with the current PT.

A great source of info on the types of TOS is at www.vascularinstitute.net.

Vascular TOS patients DO tend to have better recovery from surgery than strictly neurogenic. But I would STRESS highly that successful surgery depends on selecting a skilled surgery with a GREAT deal of experience with TOS and an excellent reputation for results. That may mean thinking about traveling out of your area or even state. This is a surgery best left to experts, and they are scattered.

Welcome aboard!

beth :)

Actually, myofascial release and craniosacral work sound like great PT to me. I understand your frustration at not being able to strengthen. Resting is probably exactly what your body needed. However, if you do have nerve compression, and it cannot be resolved, well, you may never feel better.

Have you had a scalene block? Have you had Botox? Done properly, both are a very good indicator of whether surgery will help you.

I just had surgery 4 weeks ago with Dr Ahn in Los Angeles. I think I am very close to feeling at least as well as i did before surgery. Now, that wasn't particulalry well....but at least i don't feel worse! I expect the part where i start to feel better to take a bit longer. I had a nerve that was curled up aroud my rib and very swollen and aggravated. I was told it would take a bit of time to calm down- longer it was compressed longer it will take to calm down. I may still be in for some surprises when the nerves start to "wake up" but the surgical part is largely healed.

i think your recovery is directly related to how you feel now. if you are fairly functional now, you will return to fairly functional after surgery, assuming you have it with a good surgeon who knows what he is doing. The part where you start to feel better than before surgery may take longer and require diligent rest, PT, and avoiding behaviors that aggravate your symptoms while your nerves heal.

I am actually comtemplating having my second surgery as soon as next week which will be 5 weeks apart. My left hand can function for most ADL. I can drive, i can wash myself and my hair, though i don't do my hair every day, I am still using half gallons of milk and such, but i get by OK. I am also still out on disability ( i went out about a month before surgery because i just couldn't swing work, home, 3 kids, and tos anymore), and until i resolve the back pain that i had before surgery, i won't be going back because i can't sit in a chair.... but i feel about as well now as i did before.

Where are you located, what surgeon are you thinking about using? DId you see a neurologist or a surgeon for your diagnosis?

please PM if you want to talk more- got to run now

Johanna

PS, obviously there are special concerns if you have serious veinous or arterial symtoms that indicate a clot, but if you saw a good specialist, they should have looked out for that.

I think it is true that neurogenic compression is likely if you have veinous and arterial compression.

Sorry, You've Got Homework to Do!
 

hi and welcome, sorry we had to meet like this.

if you've just been to a TOS specialist, then i'm afraid you may be back at square one. while i agree that myofascial release and cranial-sacral therapy are good methodologies in terms of what works for a TOS'er in the world of PT, if you have JUST gotten that dx then the chances are that the practitioner you've been working with up until this point is one that either is not specialized in how to work with one of us, or has not been utilizing a TOS protocol with you. if you've not been getting better, suspect the former! (they ALL "say" they know how to help TOS'ers; very few do, just FYI...)

this is not to pass judgment on your PT. it is an unfortunate fact that, in this country, anyway (i am assuming you are in the US), less than 10% of PT's receive the training necessary, let alone the practical experience, to know how to work with someone suffering with an injury like this one.

it is very important to find out, first of all, if your TOS sx are primarily arterial, veinous, neurogenic, neurovascular, or a combination of the foregoing. as has been said, there is a risk of a blood clot forming if your TOS is primarily veinous. if it is arterial in nature, i believe the danger is of an aneurysm developing. i'm not trying to scare you and presumably, the TOS specialist you consulted with went over all of this with you during your exam. the good news is, if you ARE a candidate for TOS surgery, then your prognosis is much better than that of a primarily neurogenic case if yours is mostly vascular.

i also agree that it would be hard to imagine a case of primarily vascular TOS without at least some neurogenic compression going on; it all goes together in a very tiny space, anatomically speaking, and it's all a matter of degree. but from the little bit of information you've provided, it sounds like - and i hate to say this - you are at the beginning of the journey. i know that's probably not what you want to hear.

has the doctor ordered any additional diagnostic tests for you, to confirm the TOS dx and if so, what are they? many times electrodx and/or a scalene block will be ordered, for example (i think few places in the US offer botox injections into the TOS muscles, but los angeles is one of them, johanna...we are lucky in that aspect!), to determine degree of neurologic deficit, as an indicator of whether someone might be a good candidate for surgery, etc.

but more often than not, unless there is vascular compression serious enough to threaten a clot or an aneurysm or you fall into that 1% category of true neurogenic TOS (which you've already told us you do not, as yours is trauma-induced), any good surgeon would want you to pursue a proper course of TOS-savvy PT for a good 6 to 9 months before even considering surgery as an option.

you can always get a second opinion, and if you're bound and determined to get the operation, you'll find some idiot willing to cut you open!:D (kidding! i'm only kidding! how does that old saying go?

"the trouble with carrying a hammer around is, pretty soon everything starts looking like a nail...."

but i am dead serious when i say, please stick around and do some reading and lurking here before you decide anything on the surgical front. TOS surgery is a major ordeal and a hard recovery and not something to be entered into lightly. you may very well want to consider traveling to have it done by one of the top docs, as beth has said. johannakat did a thread pretty recently on how she chose her surgeon, which you will find in the 'doctors and PT' sticky in the uppermost part of the forum. or use the 'search this forum' function, you'll find lots of stuff from past threads.

but johanna's obviously lost her mind now and not to be trusted. so don't listen to anything she has to say from here on out.:thud:

(surgery next week are you out of your F'ing mind my good woman? what about our roadtrip for god's sake; here i thought we were waiting for you to recuperate and peel yourself off of that couch...

shelley talk some sense into YOUR friend, would you puleeeze!!!!)

sorry, welcome, welcome, pull up a chair... don't pay us no nevermind we've just all gone 'round the TOS bend. plus we're on major drugs!

hope you like marlboro men:eek: :eek: :eek:

oh, and i wanted to ask you whether you have a pain management specialist on your tx team, as many here find that invaluable in addition to a good neurologist (some of us have been lucky enough to find a PM doc who IS a neuro, actually:)), i personally don't like to see anyone struggling with a big decision like whether or not to get TOS surgery done with pain levels raging out of control. it is supposed to be an elective procedure and calmer heads need to prevail. definitely not a fix-all or something that will take all your pain away, by any means. won't even get you out of PT....damnit:cool:

bottom line? i hope you don't have to have TOS surgery. there are many who believe TOS to be a soft-tissue problem - if you find the right PT who's to say wonders cannot be worked, but the key is you must get actively involved at this point in designing your own treatment plan and get into a killer headspace to fight this thing. if the dx is accurate you are in for bumpy ride. the good news is, look around the forum - this is your support group! the bad news? look around the forum; this is your support group!:D

alison

More complete explanation about my dx
 

Jo, thanks so much for moving my intro to somewhere where people could see my questions! I think I'd better clear up a couple things about my history, just so everyone that reads this can understand where I'm at.

I am rescheduling my first surgery from this week to August, when I will be more prepared for it! Also, I just found out that I have the cervical ribs, or at least that's the procedure code used for the surgery.

Everyone, it's actually a thoracic outlet surgeon/specialist that is also a professor of surgery at the University of Minnesota-Minneapolis, Dr. Ernesto Molina, that is suggesting the surgeries. I actually found his name on your board's doctors list a couple of months ago. I tried to get a third opinion from Dr. Paul Gannon in Coon Rapids Minnesota, another name on your list, but he retired two years ago. I had already been going through physical therapy for a year exclusively for TOS prior to consulting with Dr. Molina. He did not go over things thoroughly with me during after exam, but I know that I lost arterial blood flow in both arms at 180°, and venous at 180° in my left arm, all shown by a Doppler ultrasound of my thoracic area. Compared to what I'm reading here, that doesn't seem so bad, but I do have a lot of pain in my hands and neck primarily, though it flirts around in my forearms, elbows, and shoulders on occasion. My EMG/NCS for my upper body was normal, but I had that done in Duluth and let's just say they didn't check all my nerves or even both arms completely, even though I asked them to. But as someone noted, the EMG can't pick up sensory nerve damage.

The doctor who initially diagnosed me with TOS was an orthopedist, and that was in the spring of 2006. He did arm posture tests and felt for my pulse. The physical therapy I initially had was working on stretching, posture, and using Graston (those metal tools! HORRIBLE! I cannot recommend!). Now, I don't really have a problem with my posture, but stretching my neck has been difficult since some months after the car accident (June 2005), I'm assuming because of scar tissue buildup in my muscles. The physical therapist I am currently seeing just does light myofascial release and cranial sacral work, which has helped. I visited one other physical therapist who basically only give me strengthening and aggressive stretching exercises which flared me up horribly, and though I have checked around Duluth, there isn't anybody that I can find who really specializes in a lot of TOS here. I would have to find someone who could drive me 2 1/2 hours each way down to the Minneapolis area in order to see a trained TOS physical therapist. I also see a chiropractor, but finding one that knows anything about thoracic outlet syndrome seems impossible. The chiropractor did give me a good chest stretch where I lean into a corner, though that can irritate me sometimes if I do too many.

The long and short of it is, a lot of my family and friends are encouraging me to have the first surgery on Wednesday, though a few are cautioning me not to jump into anything that might cause more harm than good (which is what my own gut is telling me). Unfortunately, the surgeon will be retiring shortly which will limit my options for future surgeries. I am unemployed because of my injuries, a graduate student who would start classes in September, and I do not have the financial means to travel out of state for any surgery, nor do I want to become a more of a burden on my family than I already have. I do have the option of waiting until the end of July to have the first surgery performed, and that is what I'm leaning towards because it will give me more time to have things done like a scalene nerve block (though I will have to go to Minneapolis for that). I also have foot problems, bursitis on the backs of both heels, which makes it difficult to walk or stand for long distances, so it kind of sucks to have all four limbs with some sort of dysfunction.

Anyway, as you can see I'm in a bit of a conundrum. Maybe losing my blood flow at 180° isn't even that bad, I have no clue. X-rays didn't show a cervical rib. I had an MRI done of my neck previously which only showed loss of cervical lordosis (curve). But this weakness in my hands and arms is driving me nuts! Any more advice would be appreciated, as I really need to hear from people who are going through this! I am also reading your posts, which I'm finding really helpful.

Thank you!

Melissa

Oh, I requested the Sharon Butler book from my local library! Can't wait to start some of her stretches!

Melissa,

If your gut is telling you that surgery could make you worse, I'd trust that feeling. I had the same gut instinct, ignored it, and went forward with surgery with an experienced vascular surgeon. Two and a half years later, I'm worse than I was prior to surgery.

I understand that you are frustrated with your lack of strength, but that's nothing compared with what you could be feeling. I'm not saying that surgery is wrong for you, but it would be good to feel more confident going into it. Take your time, get your questions answered, don't be swayed by people who want you to get better right now.

Take care,
Kelly

Melissa,

Hi ! Your story is just about the same as mine. I have been dealing with TOS for 3 years now and because there are not alot of Dr's in my state, I have had to research EVERYTHING myself. Of course this is the best place for you too !

Anyway, I finally have found a Thoracic Surgeon in Boston that just confirmed Arterial TOS and I also had an MRA done a year ago that showed subclavian compressions. (along with a host of other tests.. most were negitive ) I also have seen a Vascular Surgeon who just confirmed the arterial flow was "significantly decreased"( in the right arm) by a PPG test. (I was so happy that someone finally saw something ) . I am also seeing a Pan Mgmt clinic next week which I am very happy about. (more new tests to come )

Definitely research a little more, I don't know if I am a candidate for surgery yet, but definitely listen to these people they know what they are talking about. It is a very painful disease to have and it stinks when you don't know enough about it and your frustrated. Go with your gut feeling I say.. but learn about it too. Welcome to our family.. we are all here to help.

All the best...

Dolfinz
P.S. Hi Everybody !! Great posts !:hug:

:Red eyes:
there is no good smiley for exploding heads..

but mine is pretty much exploded. (my littlest got croup on top of asthma cough and i spent the wee hours of this AM in the ER with her..... :(so no sleep, and lots of stress....)

back to surgery, though, Frankly i am amazed at how good i feel in some ways and how not at all better i feel in others this 4 weeks out. I am definitely still on all my pain meds, more of them actually, but I am quite functional when i have them.

I am decidedly non functional when i dont have my pain meds.... so maybe i am not as better as i think i am, who knows????? (an extreemely cool head that i have with good pain meds, i guess)

can anyone else chime in here, did you feel good then crappy again at some point? Is my happiness going to come crashing down one of these days?


In any case, no surgery next week, dr ahn is out of town. (i put this in for Alison's sake)


didi i mention i have had no sleep and lots of stress? I am SOOOOO rambling.

nighty night everyone :)

Johanna

I've not had surgery- I actually listened to that little voice in my head that said "WAIT!." that, and the thoracic surgeon i saw said it was pretty much 40/60 odds that it would make me better. I didn't care for those odds, and neither did he. I have been doing nerve blocks and trigger point injections since last October with mixed success. They have worked better over time, which is good. ANYWAYS- i would say to not rush into surgery.

Got my medical records...
 

Hello everyone,

I received my medical records from my visit at the University of Minnesota and though there is no mention of the cervical rib (I was under the impression I had one because the procedure code for my surgery was for resection of a cervical rib. Guess not), the Doppler ultrasound of my arteries and veins has made pretty freaked that I will have to have the surgery. Does anyone know anything about reading the results from the sort of ultrasound? I'm currently searching for research article to purchase off the Internet (http://www.jultrasoundmed.org/cgi/co...tract/20/7/795 ), and my surgeon is out of the country so I can't ask him.

Besides losing velocity completely at 180° bilaterally, my peak systolic velocity for my left arm vein were all really low except at the resting/starting position. My arteries were better on both arms, but both still lost complete velocity at 180° as well as had a couple of rebound effects, one where my arterial velocity went up to 172 cm a second at the 90° position.

Here, I will try to give you the results of my venous findings to see if anyone can clarify this for me:

Veneous Right upper extremity:

Innominate: 76 cm/sec
Subclavian med: 24 cm/sec
Subclavian mid: 33cm/sec
Subclavian mid at 90degrees: 172 cm/sec
Subclavian mid at 135 degrees: 63 cm/sec
Subclavian mid at 180 degrees: 80cm/sec

Veneous Left Upper Extremiy:

Innominate: 71 cm/sec
Subclavian med: 24 cm/sec
Subclavian mid at 90 degrees: 27 cm/sec
Subclavian mid at 135 degrees: 39 cm/sec
Subclavian mid at 180 degrees: 0 cm/sec

Thanks to my mom for typing that part out for me!

Does the left looks scary or is that just me? Plus the 172 cm/sec on my right arm at 90 degrees. Scary!

From what I've read in the literature, TOS from accidents have better results from surgery than repetitve strain injury cases. The results are also better if it's done sooner rather than later.

The type of therapy you have had is similar I had initially, and while it helped restore range of motion, reduced pain, and got me better enough to do active PT, my ability to do anything was quite limited. I improved alot with the right kind of active PT, the edgelow protoccol. You can get it online www.edgelow.com and there are some tips I posted a week ago on how to learn it without a PT.

You have some differences from my injury and I'm not a surgeon so I don't know if this will help, but it's something you can try while you are deciding.

Two important things I learned what that TOS will not heal if you don't do aerobic exercise (which you might have to work up to slowly) and you don't strength the longus colli muscle in your neck.

Melissa you might call and verify if there is a cervie rib or not- they may not have put it in the report or the other report/code may have an error??

I did get copies of my MRI films - just for the heck of it - it did cost $10 per page/film I believe - some newer places will put it on a CD for you - my hosp didn't have that option at the time.

there are some really good videos of massage , triggerpoint , chiropractic, posture anything like that that you would want to see how it is done - it's so awesome - on those you tube and other video sites.

There are a few posted on the forum here but it's easy to do a search right on the Youtube or google videos.

here's one topic to get you started- these are great to explore and learn from
http://video.google.com/videosearch?...e+therapy&so=0

Thanks for the input and I'm online checking out the edge low technique right now. I just wanted to mention that for the first year after the car accident, I did as much aerobic activity as possible but I developed plantar fasciitis in that same year after a work-related accident so I was limited. It was about 10 months after the car accident when I was doing a lot of upper body strengthening (push-ups, using the exercise bands, etc.) with my aerobic activities that the thoracic outlet syndrome started in, though I had had neck muscle spasm the entire time. I blame it on the upper body strengthening, not the aerobic, and while I do some aerobic exercise now, I am very limited because though the plantar fasciitis healed, after the car accident my pelvis twisted as well and I was recently told by a chiropractor that because of that I developed degenerative disc disease in my lower back which caused a bulging disc at S1 that touches both nerve roots (I'm only 30 and was in great shape prior to the accident), and that the twisted pelvis has contributed my now having bursitis at the back of both Achilles insertion points in my heels for the last 7 months. I'm like the walking wounded! Literally. Sigh, I only wish that stupid car accident had never happened. Okay, now I'm regressing to a five-year-old, but it really has mucked up my body.

Anyway, anyone with any input on the Doppler ultrasound, let me know, though I did purchase the Journal article I linked above, and it showed that the high Cm/sec were from a rebound effect due to constriction and that normal blood flow is between 50-100CM/sec, so mine can be either normal, too low, too high, or not at all, thus the vascular TOS diagnosis.

Update!
 

Hello everyone,

Well, after seeing some marked improvement this summer with just myofascial and cranial sacral work, including going from a grip strength of 12 pounds to almost 30, I've decided to put off my first rib removal and scalenectomy for the time being. Unfortunately, I've been in a flareup since late last week and am now wondering if I made the correct choice. Rib movalization in PT irritated me, then I packed some small stuff for a move over the weekend and now I'm regretting it. I've been referred to pain management for a scalene block, but I've recently found that I do have tight pectoral minor muscles, plus restricted movement of my first and second ribs especially on the right side, so I might have a pectoral minor block performed first. Unfortunately, I live in Duluth, Minnesota and there might not be any physician here that performs these regularly.

One of the other reasons I decided to put off the surgery is that I'm moving to a condo the first week of September, also the same week I start graduate school. The condo is actually cheaper than this house, plus they do all of the lawn and snow removal which are two things I can no longer do. I'm really looking forward to the condo, though not the actual move itself. Some parts of me think that maybe I should've just had the first surgery and be done with it, but then I might not of found out about my tight pectoral muscles in time, or been off the pain killers in time for school. Argh, what an awful decision to have to make when there never is enough time.

Anyway, that's my update...

Best wishes to you all!
Melissa

ultrasound
 

Melissa, I think it makes good sense to postpone surgery until you are very sure---unless postponing puts you in danger or if you have a type of TOS that could lead danger of clotting. I too had the study at UnivMN and am awaiting results. (I don't know how to reference another thread and I don't know what "bump" is or how to do it) but see the thread "New Jordan, Ahn, and Gelabert paper" that Johannakat started.

I put a link there for a paper I found that explains the study. The tech didn't follow the protocol exactly and I wonder about that. He had me HOLD UP my arms (very difficult) instead of holding them up for me. The paper says that the resulting muscle tension gets in the way of the study if you have to hold them up yourself. Also, it says that only 5% or so have non-neurogenic TOS. If that's the case why do they go to such extremes to find out? Did you happen to get a follow up test? I think they mentioned a veinogram if a study shows vascular TOS.

In your surgery investigation it would be good to talk by phone with at least a few patients that have had surgery with your particular surgeon. They will tell you things you would never think to ask. I had those conversations and learned many details (but not w. Dr Molina's patients). So far I too have put off surgery. I think it's a good idea to get settled in your new space and make sure that you have all the support you need and everything lined-up before moving forward. One patient told me that she filled her frig with frozen dinners only to find that she couldn't hold the tray with one hand and cut the film with the other. I hope that you will continue to get better and be able to avoid surgery.

First, I agree with Fern that hopefully you can avoid surgery. I did have a rib re-section and scalanectomy. It did help. One thing I definitely agree with is IF you have to have this surgery or you know someone having any type of surgery, plan ahead. I injured my neck when I had three young children. My husband and I ran a business out of our home. Luckily my mother and mother-in-law were able to help. BUT, my neighbors got together and cooked dinners for us for a week. Now I'm not talking a baked ziti, or something simple. They made a full course meal. Salads, brisket, chicken or another main dish. veggies, potatoes, etc. plus dessert. I cannot tell you how thankful I was to these friends. It reminded me of how important friends and neighbors can be. Just one night a week for a group of people can make such a difference! Our Church, each year around Easter, takes turns making dinner for our minister and her family so she can direct her attention to the Church and all this time of year entails. She can come home and not worry about feeding her children.

Good luck with the move. That would be a very difficult thing when you are in pain. I've been in the same house for 15 years and don't ever want to move again! The last move I had a 2 year old and 2 month old!

Best wishes! Linda:)

ah, yes i see where you are with surgery, now :)

almost everyone with TOS (and many others who don't) has really tight pec minors- BTW, so don't be too alarmed !!! A very gentle doorway stretch might help- or just laying on the floor with your arms out in a T (or on foam roller if you can tolerate that.

Hi I am new to this forum I used be on Brain talk..to get to the point I have been having problems since the ealy 90's.I am a dental hygienist or was for 20+ yrs. I have been disabled since Jan 2004 and am presently on Social Security disability and fight WA State depart of Labor and Industries to reinstate my pay as the cut me of 14 mos.ago because of an IME that was not an honest write up concerning my situation.I have bilat-TOS with bilat-carpule tunnel and ulnar nerve irritation.My TOS is neurogenic however with that and is common I had a vascular workup that shows I have severe compresion of ateries and veins on the left and mod on the right. Bu this does not mean I have vascular tos it does however prove the nerves as well as the blood flow are being compomised.I started having abnormal EMG studies of the muscles in my left hand in 2002 very slight almost insignificant.with in 9 mos it showed in bboth hands. I knowhave atrophy in both my hands. The state won't allow surgery until thee is 50 percent nerve damage and I am told this type of TOS that doesn't happen mean while the pain is severe unless I absolutely do nothing but lay around.But as soon I start doing anything I suffer for it.I have severe headaches 3-4 x a week where I have to take migraine meds for and I almost always know when I am going to have them because my neck is sp tight and painful. I am having a new IME on the 21st as the state are not recognizing the neck pain ans part of this disorder and on the 21st of Sept I have mediation hearing concerning the headaches as the state doesn't recognize those as well. I am trying to get as much documentation to take to bothe appoints concerning neck pain and TOS and Headaches and TOS.If there are any Dental Hygienist out there with this disorder who has documentation of not just TOS butalos neck injuries being associated with our proffesion that I could give to the IME docs t would really be appreciated.I was just notified on Friday this exam is the 21st and that is only a little over a week away.Anyone with TOS in WA State there is agreat doc at Swidish!!In Seattle!!! Thanks good luck to all who suffer with this debilitating disorder.

I had my TOS surgery.....it will be 2 years in September, and I have never regretted it.

I was in so much pain. My hand was constantly turning blue and was swollen.

I felt relief immediately after it was over.

Am I completely cured? No.

If I am not careful, I do have flares (no blueness or swelling), but just muscle tightness in shoulder and sometimes throbbing down the arm.

But, nothing like I was before surgery. I have so much of my life back.

Now, will that surgery do the same for someone else? It will just depend on that person.

I would ask the surgeon doing the surgery what will be the chances that the surgery could make it worse. That may help you in your decision.

I was happy for any relief.

Peggy

ladybird1957 ,
I copied your post to a new thread so everyone can say hello and reply to you there.

here's the link to it-
http://neurotalk.psychcentral.com/sh...ad.php?t=25802

article
 

Melissa,

I am assuming you don't still need the article??? if you do PM me

hugs,
Victoria

Dr.Molina
 

Mellissa,

I know this post is a few years old but I'm hoping your still on here! I have a crevical rib as well going to see Dr. Molina on Tuesday, and I am desperatly seeking patient feedback about him! Did you get the surgery? How did you like Dr. Molina? I've searched everywhere and the one thing I know is Dr. Molina is a very smart man, publications, studies regarding TOS and Cervical rib resection on the NIH website. But, Im scared this may sound Biased but, hes 76, I just hope he is still very much capable.