I was kayaking a few weeks ago (one of my favorite hobbies) and my left arm suddenly became extremely tired. By the time I got downstream my arm was in serious pain. Over the next day my arm swelled and briefly was blue before returning to normal color a day later. Then veins began to appear all along my left chest and underarm. I decided to see an ortho surgeon.

The initial x-ray showed nothing. The doctor almost just wrote me off and sent me to PT, but then I mentioned my veins and immediately he told me he thought I had something called Thoracic Outlet Syndrome. I had an EMG done, nerves "perfectly fine" according to the neurologist who performed it. Then I had a duplex ultrasound and they found no clots.

I thought I was out of the water, but the doctors still think I have a vascular form of TOS. I'm going in for a venogram on Thurs but I'm terrified! Not just because I may have VTOS but because my ortho surgeon had another ortho assess me just to be sure and they both told me that if this is not what I have, they have no idea what our next step will be.

The lack of a diagnosis scares me because I'm left handed and even writing for a prolonged amount of time hurts. I'm only 21 I don't know how I can live with this pain for the next month let alone the rest of my life if they can't figure it out.

I've been googling and googling and I have no idea where I lie. I have all the symptoms, pain in the neck, shoulder and arm. Veins showing on my chest. Arm is still swollen weeks later.

Anyone with similar symptoms?

Can you have VTOS without blood clots?

And if I don't have blood clots is it possible that this can just be treated with PT? Or will surgery still be the better option?

I'm in serious pain and it constantly gets worse throughout the day unless I immobilize my arm in a sling. I was given muscle relaxers and 800mg ibuprofen and neither relieve the pain. I'm at my whits end!

If I have this what are my chances of recovery (with or without surgery)?

If I do need surgery, how long will recovery likely take? I'm currently in school for engineering and I'm left handed so I need to be able to write. The University has a lot of resources for people with medical problems and handicaps but I'd prefer to be able to take my own notes because that's primarily how I study. I'm also wondering if there is the possibility I need surgery, maybe it could be done during my winter break from classes. Is there a chance that I will be able to write again 3 weeks post op? And is this time frame possibly too short, as in there is no way I'd be ready for surgery in Early December if I need it?

Please help ease my mind. I'm incredibly stressed from school and now I have this problem with my arm and my mom thinks I'm overreacting and that I just have tendonitis or something and that these doctors are liars. I know she's wrong but the arguments we've gotten into have cut her off as my support so now I really have no one and I'm a huge worry wort so I just can't stop thinking about this and how it may affect my future.

I've read several different sites that say surgery is the best option, but then I've stumbled on a few that say surgery is controversial and can sometimes worsen symptoms or fail.

I have no idea what I'd do if I had to give up rowing and really how good would I be as a one armed engineer (not saying I'm going to lose the arm just that the pain is severely limiting my use of it).

Sorry for so many questions, but I just have no idea what to expect and I'd really like to have some idea of what's to come.

Was this an overly long kayak trip that what you were used to? Or just much more or strenuous paddling? Or had you been studying/writing more than usual before this?
If you have done a lot of rowing /training over the years you could have hyper developed upper body muscles, if you let those muscles relax and return to normal - you may get beyond the pain and compression issues.

The symptoms sound pretty familiar to VTOS.

[Can you have VTOS without blood clots?]
YES, you may never get a clot , but the risk of a clot will be there as well as the pain.

Expert PT and /or expert chiropractic may be able to help restore the body to where it used to be when there were no symptoms. But that does take time and a lot of care & focus on resolving the issues and healing.

I'd would wait and see what the venogram shows..then go from there.

But since there is not a clot to worry about right now PT may be suggested unless they find some anomaly that PT can't resolve. Make sure to ask for the best PT you can get.. and if that person does not fit for you find another one.

I would suggest looking into voice recognition or recording and other ways to study that will not aggravate your arm at all.

I would stop the rowing and find something much less arm intensive for awhile.
Take all the energy and focus it on healing for now.

Explore our sticky threads, use the search tool for key word searches..

To be honest other than rowing occasionally, I'm not very active with my arms. I did forget to mention that I had shoulder pain on the same side about two years ago. I rowed crew my freshman year in college, but it was more leg intensive than arm intensive. The summer after I quit is when the pain started. Went to an ortho who found nothing wrong so he just sent me to PT for a few weeks. It helped for a bit but a few months later the pain was back. On good days it was nonexistent, on bad days it was bearable with ibuprofen and icy hot. I learned to ignore it thinking maybe it was poor posture or it was all in my head. Finally it was bad enough that I went and saw a GP who told me it was muscle spasms due to weak muscles. So I started lifting over the summer, twice a week. I gave up after about a month to focus more on running. The Monday before my kayaking trip I ran a ten mile race, which is the only difference from my usual day to day routine, but I felt great afterwards and was excited to start training for a half marathon the next Monday. Then that Saturday I took a half trip down the local river (something I've done several times and even full trips) and my arm felt off but I was already there and ready to go so I figured maybe I just slept on it wrong. Halfway down to the pickup point is when it started to get bad, I couldn't row much because my arm was dead tired so I just let the current take me most of the way. By the end of the trip the pain was coming on. And now I'm here.

Since then I haven't been active at all because of the pain. No running, lifting or swimming. Just the occasional dishes and daily note taking for class, though I gave that up this week and have opted for taking pictures of classmates notes at the end of class. So resting it has had no help, in fact the pain has been worse these last few days (possibly because of a drop in the temperatures?)

Does the lack of clots in the ultrasound guarantee that I don't have clots? I stupidly listened to my mother and went home to the ER for the ultrasound and they checked my neck and my arm in an upward position while opening and closing my hand. Is this standard for an ultrasound or should they have done more? They didn't send me home with the CDs so I couldn't even give them to my ortho for a second opinion.

This last visit to my ortho when they decided on the venogram they also found I had a decreased pulse in my left arm when they made me hold it above my shoulder for 30 seconds, I don't know if that's a symptom they didn't really explain.

Also how odd is it to be getting a venogram done at this point? My mother is convinced that it isn't necessary because she thinks they could still do an MRI or a CT, hence the arguing. I disagreed with her because the ortho brought in a radiologist and an intervention radiologist and they collectively decided this was the next step. I just want to make sure I made the right decision in ignoring her because I know I made the wrong one in going home for the ultrasound.

And any tips or links to threads about pain management? Nothing is helping, I've tried ice and hot baths, 1000mg of ibuprofen, muscle relaxers and icy hot and the only thing that helps is immobilizing my arm and I can I only do that so much because I still need to be able to write.

Thanks so much!

I'm sure if the docs thought a MRI was needed they would have done that.

Have you had any basic neck/c spine xrays during this time?
Just to make sure there are no bony anomalies? like extra cervical rib? large transverse process?

The past shoulder pain/injury could have caused some internal scar tissue.
I had chronic shoulder pain for a long time then wrist pain then it spread to the elbow , whole arm upper back/neck...

wet/damp weather and weather changes will tend to make more pain..

If those things you are doing for pain are not enough, then it is time for a doc to rx meds.

The venogram will show where the problem is , if it is vascular related or not.
It sounds like this is something that needs to be done..also in case surgery becomes an option , it probably is required as dx proof.

Much of TOS dx is ruling out of any other causes.

Being posture aware is good, esp if shoulders/head are forward of the body, getting them back to aligned gently should be a good plan.

For some with VTOS the overly military posture increases sx so be aware of that if you do posture work.

You've come to the right place for answers; there is a wealth of information in the "sticky" threads at the top of this forum, and you can use the forum search function to find threads and posts about VTOS, pain management, PT, etc. I am glad you're here but sorry for the reasons why. I was stricken with "true" NTOS while still in college, and can really relate to some of the concerns you have with respect to note-taking in lectures and stuff. Go as easy as you can right now on your affected side, avoiding or toning down activities that trigger symptoms for you.

Try not to worry too much about the prospect of surgery. If you do have VTOS it is a mechanical problem which generally responds very well to TOS surgery. Most of the "horror stories" you will read pertain to NTOS, which is much more resistant to treatment (including surgery) than is VTOS. Your recovery period would also be much shorter than it would be for an NTOSer if you do need surgery.

VTOS is also easier to diagnose. It sounds like you've been put through some provocative tests clinically (and tested positive for TOS), and the venogram does sound like the next logical step. You should be aware that TOS is NOT an orthopedic problem, it is a neurovascular entrapment disorder. It doesn't usually show up on diagnostic imaging studies (MRI, CT scan, etc.) or even on electrodiagnostic tests (EMG, NCV). That doesn't mean the diagnosis is incorrect. What you really need is a vascular surgeon who specializes in TOS. Check out the Drs and PTs sticky thread to see if there is one listed for your state; otherwise, it might be worth your while to travel to one (Johns Hopkins in MD has a good vascular surgery department, for example). Consulting a surgeon does not mean you will have to go under the knife, by the way.

I agree with Jo that you may need some prescription-strength pain meds to keep you comfortable through the process of getting an accurate diagnosis, prognosis and treatment plan. Don't hesitate to ask your doc for this, as well as a good muscle relaxer and maybe a sleep med. You should also probably be on some type of blood-thinner to ward off blood clots, if you're not already.

Most TOS surgeons will have you try noninvasive stuff first, like PT (with a TOS protocol) for a few weeks or months, as well as lesser invasive things like a scalene/pec minor/subclavius muscle block and/or Botox injected into these "culprit" muscles - your responses to both of which procedures are good indicators of how well you would do with surgery. If you go the PT route, please, please make sure it is with a TOS-savvy PT! Traditional PT, with its emphasis on strengthening, "no pain, no gain," etc. is the exact wrong approach for TOSers!

Good luck to you with everything; keep posting here to let us know how you're doing, OK? We are here to support you and will be happy to address any questions or concerns you may have.

Alison

Jo, I have had a basic x-ray of the shoulder when I initially visited the ortho. I don't know if they were looking for an anomaly, but they must not have seen something too shocking because he was going to just send me to PT until I mentioned my other symptoms. Then he started to suspect TOS and we started diagnostic tests from there.

They told me this venogram is the last test they're going to do for TOS. If it's negative, the doctors will be scratching their heads because this seems to be the only lead they have. If it turns out that I have TOS, my ortho has told me he will be sending me to a vascular surgeon and I guess that's when the real stuff begins.

I should know by next Monday if all goes well.

As far as pain meds, I did get prescribed a muscle relaxer but it doesn't help and it makes me drowsy so I've stopped taking them. I'm very wary of pain pills because the few I've been put on through my brief 21 years have all knocked me out. I'm not very savvy on prescription pain meds, but is there one out there that may work and won't make me drowsy? Seems like a lose/lose otherwise. I either deal with the pain and stay away or take something to help with the pain and pass out.

I'll check out the stickies as soon as I have time. I've checked a few out, but not extensively since I'm currently in the middle of midterms. But having all of this information in one place is already proving to be a lifesaver.

Thanks so much. I'm trying to remain positive and hopeful that I won't need surgery. I'll definitely update what happens.

Sounds like it could be “intermittent venous TOS,” which is sometimes referred to as McCleery Syndrome. The definitive diagnostic test is a dynamic/positional venogram.

Here is some info:
http://www.ncbi.nlm.nih.gov/pubmed/24334914
http://www.sciencedirect.com/science...41521404016891
http://surgerydept.wustl.edu/TOS_Patients_Venous.aspx

From the WUSTL website shown above:
….In contrast to the effort thrombosis syndrome, some patients with venous TOS may have a more protracted history of arm swelling, fatigue, heaviness, and pain that occurs only on an intermittent basis, especially following vigorous use of the arm. Such patients may have non-thrombotic positional obstruction of the subclavian vein at the level of the first rib, which has not yet evolved to produce axillary-subclavian vein thrombosis.

TAYBM20,

i had pretty much the exact same symptoms a few years ago. I will suggest you to go take a look on my post about Re education posture global. Like Alison said VTOS is usually a mechanical problem so you have to get help to find what is wrong. I believe the R-P-G is the best way to go but a good PT or chiropractor who have good skills with TOS will be able to help you.

I my case a saw a few PT and chiropractor who did NOT have good skills with TOS and they made my condition worse so i had the first rib resction but dint make any differance. I was not able to write for more than 10 minutes without having terrible pain. Surgery was really easy for me but it was just a waste of time. After i found the Re education posture global and i believe it's the most amazing treatment you can get for any kind of TOS and also i found a really good neuro chiropractor who have good skills with TOS. So i have VTOS and NTOS but i am back at 80% i would say and i keep going foward .

I will sugest you to do everything you can to avoid surgery. If you are lucky surgery is gonna work but there is always chances of complications. If you are like me it's just a waste of time but at least you don't go backward. Do your best and make sure you find right people to help you!!

Alexis

Hey all,

Had my venogram today, one x-ray was all it took and the IR stopped the test, immediately seeing what was wrong. Apparently, the hospital in south florida took the sonogram of all but the right spot which is obviously on my chest under my clavicle.

I have a 3 cm clot.

They moved pretty quickly and had a vascular surgeon come in to see me within the hour. She's very nice. She seems experienced and has treated multiple patients with TOS. Her recommendation was an angioplasty followed by first rib resection surgery.

I'm having an angioplasty next week and then we will be scheduling surgery a few weeks later.