Hi all! New to this forum and newly dx with TOS. It has been a very difficult 3 months. I am in PT 2-3x month and am on a cocktail of meds. Just wondering if these seem in line with what other people are taking:
Gabapentin 300mg 3x/day
Meloxican 2x/day
Savella 2x/day
Diazepam PRN
Norco PRN

I'm only 1 month in with this mix of meds but I haven't noticed any improvement. Anyone else have a better set of meds that worked for them? I have extremely painful bilateral neurogenic, arterial and vascular TOS.
Thanks new support group

Only PT a few times a month?? Are you working still along with that?

I hope you are having TOS expert PT and not the standard plan of stretch & strengthening while you are in pain..

Usually my PT sessions started at 2 times a week til improvement was shown then reduced to 1 a week, and I wasn't in super high pain only about 6 at worst times.

I did have the best results with a really good multi talented chiropractor.. mine was chronic RSI work injuries, postures related..

Yikes that's a lot of meds and if they aren't working for you....

Is the dxing and rxing dr a TOS specialist?
No cervical spine issues? no extra cervie rib?
Do you know how you acquired TOS - work, injury sports etc?

I was unable to take the type of medications that you are taking due to side effects.

I did take muscle relaxants and Diclofenac, also Vicodin when the situation became unbearable.

If you have arterial and venous tos you need to have surgery to decompress those structures, this type of tos can't be cured with PT, in fact it makes it worse.

I would not waste any more time and would start looking into surgery. feel free to ask any questions.

And the nerve will only get more angry if there is direct compression/impingement on it.. Have you had imaging or testing that shows the compression on nerve or arteries /veins?

Are the vascular symptoms constant, or mainly only if arms are raised or overhead for extended time?
Do you have a lot of swelling in your arms, heaviness, veins bulging?

Thank you for your input!
I have only had a cervical MRI because when I first presented with bilateral acute onset numbness/tingling (on vacation in Hawaii of course), they were worried about central canal stenosis. The scan only showed small bulges between C5/6 and C6/7. At the time they said my scan "didn't match my symptoms" and sent me home on prednisone, gabapentin, norco and a referal to a neurologist to rule out MS. The symptoms went away within 24 hours almost completely on the prednisone. By the time I got in with a neurologist at home, I had been on 10 days of prednisone and the symptoms had not returned. He looked at my cervical scan and said there were no lesions so I didn't have MS and the "sometimes weird things just happen to your body for no reason speech." Needless to say, I was not very fond of him.
Then, 10 days later, symptoms came back with full force and it has now been 3 months since then with basically no change. My PT is actually who suggested the diagnosis of TOS. My primary care NP agreed and here I am. Im going to see a pain specialist the first week of May who works at the Neurospine Institute in my town. Just not sure if I should go out of state (and insurance network) to go see a real specialist in TOS. I saw a clinic at UC Davis but that is about a 9 hour drive from us.
I have pretty consistant numbness in my right thumb, general weakness of both arms, and I describe it as a low voltage electricity running through both arms at all times. In the evenings, my right hand sometimes feels "dead", like really the tissue is dying. My hands are often cold but also frequently my hands are swollen and feel tight. It is incredibly difficult for me to write and typing is also hard. I barely work anymore and I am terrified of surgery. I have read so many stories of post ops that have found such minimal relief and since mine is bilateral, I just can't imagine having both done if the success rate isn't high. I'm still learning things so all of this may seem silly to you guys. I just want to push a button and have it be gone. I have a 1 year old and a 4 year old and I just push through when I have to but it makes for very painful evenings and the feeling that I have to knock myself out at night to not wake up in excrusiating pain I can't do anything about. It is so frustrating and isolating as I am sure you all know.
I go to my accupuncturist weekly but she recently has been doing myofacial release on me and it is the only thing in the last 3 months that has even made a little bit of a difference. Some people say keep moving, keep moving, some people say rest, rest. I just got a copy of the Edgelow Therapy and will take a look at that but with 2 little kids I can't commit to 4-6 hours a day of therapy...that's a full time job! But, on the other hand, I feel like I am failing them so maybe that is just what it will take.
Thanks for reading my ramblings. I appreciate all your input. Know any specialists in Oregon?!

No I totally lucked out by finding the chiro & a expert PT teacher , but I wasn’t hurting as bad as it sounds like you are.

I think we had a member from Eugene, it was awhile /yrs ago tho..I think she had a pretty good dr. I'll do a quick search and see if I can locate the username & posts.
( no luck finding that members name)

Has anyone or you figured out if more vascular or nerve, or both?
Do you know or have any ideas on how you acquired TOS.
Sometimes if we know how you might have gotten it we can better suggest things.

Have you found the sticky threads, take your time and explore those..

"Has anyone or you figured out if more vascular or nerve, or both?
Do you know or have any ideas on how you acquired TOS.
Sometimes if we know how you might have gotten it we can better suggest things."


So, symptom wise, my PT and I believe it is both vascular and nerve involvement. Blue nail beds and temperature differentiation when recreating symptoms during my sessions has led us to believe there is definitely some circulatory involvement.
As far as knowing how I got it, I really don't know for sure. I had a lower back injury (bonus, I also have degenerative disc disease)in September involving an annular tear that was extremely painful for several months before I got an epidural steroid injection. There is a thought that because I was in so much unresolved pain that I did a lot of shallow breathing for a long time which bulked up my scalenes. My PT says I have the scalenes of a football player
I've seen "pregnancy" listed randomly as a possible precursor to this and I had 2 pregnancies in 2.5 years. I really don't know. Just lucky I guess...

It seems like you are very focused on treating the pain which is completely normal but I can not stress enough the importance of finding out what exactly you are dealing with.

IF you have a serious vascular and arterial issue like I did, you need to have surgery. You can get blood clots and once that vein clots, there is a whole new level of damage on top of the damage caused by lack of blood and nerve irritation.

I highly recommend that you get the proper testing and figure out all this before continuing with pain management. You need to treat the cause, not cover it up.

I also wanted to add that it sounds like you do have a lot issues with blood flow. Since I had the surgeries my hands never swell anymore, they are always warm and they have color. Hope this helps

I agree with Nelly about getting an accurate diagnosis, but dont agree you need to rush right into surgery. Where in Oregon are you?

Dr. Kai Johanson is in Seattle also a Dr. Kliot whom I havent heard much about.
Dr Freishlag is at UC Davis and one of the leading experts in TOS and one of the authors of the new TOS book. Although I have heard mixed reviews of her , I think it might be worth the trip (fly to Sacramento?) to see her and at least get an accurate diagnosis. She used to be at Johns Hopkins and trained at UCLA with Dr. Gelabart,Jordan etc.

Look at these lists for TOS Dr's http://tos.wustl.edu/What-is-TOS/TOS-Consortium
For PT: http://www.instituteofphysicalart.com/ipa/referral/list
There are a few in Oregon.

IF there is a serious arterial and venous issue, the only way to fix that is with surgery. I have never heard of anyone with arterial or venous TOS that was cured with physical therapy or any type of massage, exercise. It's actually pretty straight forward.

Delaying the surgery IF this is the case will only complicate matters. I would have probably recovered much faster if not for all the damage caused by physical therapy. I was lucky I didn't get a clot. While I was waiting for the surgeries I was not allowed to raise my arms at all because the risk of clots was so high.