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

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.

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! (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.

(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

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

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!

alison

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 !

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