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..