I am sorry to hear you are having such a hard time finding more longer term relief. Keep us posted on how it goes if you see the chiro or begin Feldenkreiss. I know I asked this a while back, but have you had a recent neck MRI to check if the bulging disc is still an issue? They are supposed to usually get better on their own over a year's time. In my experience an epidural did nothing, if anything made me worse. I feel your pain about these drugs, I had real bad reactions to Tramadol a while back and Vicodin just stopped helping as I built up tolerance to it. Currently, I am on Norco and Valium and it helps me although doesn't take all the pain away and I don't think any drug will do that for me without real bad side effects. I hope you are feeling better soon!

Thanks for the support. I really dont think my disc is an issue,but who knows for sure-the mri does show it pressing on a nerve but it is over a year old. The Tramadol helped me and didnt wake me up- I took it late afternon. I feel better today and I am trying a Feldenkriess class with a PT up near me today-I talked to her on the phone and she knows about TOS, so I am hoping for a new step forward-ONWARD AND UPWARD!

Good luck jkl, I feel your pain Those flare ups are bad. On minute you are normal and the other minute you can go down to a flare up which is ooh so bad.
As far as I know wine or any good drink like that only makes my flareups better. Did you sit on anything soft?

what does sitting on something soft do? I got an appt with Dr. Ando tomorrow-I always feel better after!

It compresses I think.. I am progressing well but still can't sit on a soft cushioned chair or sofa. We probably go into bad posture or something. If you see Ando definitely ask him.

I had trigger pt cortisteroid injectons yestersay and am feeling relief!!! Will probably also start the medrol dose pak on Monday. Hopefully it will help me get through the next few weeks of work.

I also saw a new chiropracter(yogadoctor) he does gentle yoga streches and only gave me one to try instead of the nerve stretch against the wall which flares me up. He is all about breathing and also did myofacial release so I will try him for 4 sessions and add it to my PT to see if it can all help together. Dr. A thought at this pt I might want to think about getting the diagnostic epidural and radifrequency from Dr. J. It will take awhile to get an appt but meanwhile I will see how I do without.

thanks for all the encouraging words
jkl

How are things? Have the trigger pts lasted? Did you take the Medrol? The wall stretches were never good for me until after my ribs were removed.

Hi, thanks for asking-I could feel releif from the trigger pt's right away.I think it helps with the muscles but not as much for the nerves. She said I could get saline ones once a month and cortizone every 3-4 months. The only stubborn muscle is the subclavius or teres (cant really tell) which connects to my pinky. Dr. ando said the subclavius was impossible to get with the trigger pt's.
I did get a flare up on wednesday after PT which really sucks. He's being alot more aggressive with the soft tissue work lately. He keeps saying I am almost to 80% better which is when he will discharge me, but I'm not so sure with the flareups. I am cutting down to once every other week also because my insurance ran out and then hopefully once a month for the rest of the year.

The Prednizone (medrol) gets my heart racing a little and I cant really tell what it is doing-but I have been able to work part time,not in my regular profession. I wore my spinal Q all day yesterday and was moving around a lot and was much better. Took a long walk today on the beach and that always helps. Still considering going on Neurontin or doing the Epidural. Between Oct 20 and April 20 I need to work in my regular profession in order to keep my insurance so that will be telling to see if I can actually do it. I see the yoga doc again today-

How about you , Marc are you feeling okay after being discharged?

So After 2 years of having symptoms only on my right side, I have started having muscle soreness in my left shoulder and tightness under that arm and tingling in arm and wrist. i thought maybe it was just from using my left hand or sleeping funny but its been 3 weeks now and it has gotten less but hurts when sleeping. when I went to PT yesterday Dr. A said that my ribs were out on my left side too and it is unusual for TOS patients to only have symptoms on one side. he also said it was a good sign???? that it was moving around. To me it is NOT A GOOD SIGN and very depressing as I was feeling somewhat better on the right side. Has this happened to others.?

So I've been sleeping on the good side now it hurts to sleep on either side, so I went to bed bath and beyond and bought a body pillow and a wedge pillow. My pt showed me how to use the body pillow and lie half on my stomach and half on my side. I am going to try to sleep on my back using the wedge pillow as it seems to feel better when I dont lay flat. I tried both last night and still had a hard time sleeping

Does anyone have any advice??

Trying a new massage therapist today-he is my feldenkriess teacher and also does Myofacial Release etc. will post on the outcome.Not cheap but close to home.

On Feb 20 I was diagnosed with Breast Cancer. I have a large mass on my left breast. After all the mri's and xrays on my right side, no one ever noticed or looked at my left side. I was so focused on the TOS for the past 2 years that I did not get a mammogram for 4 years. this is what is the most frustrating and makes me so mad at myself as I was so thorough with the TOS.I have a top of the line surgeon at Cedars Breast Center in L.A. and have been very impressed with them so far and am undergoing tests to see what kind of surgery and treatment I will have to have. Its going to be another long journey.

My spirits are pretty good-after the initial shock and sadness, I have MANY friends who have gone through this and lots of support.

I have decided in this case, NOT to go on the internet and NOT to go on the forums.It is just to scary to read about at this point anyway. It has been such a different experience with the diagnosis and dr's I cant even tell you-it is so routine-so common-I had a diagnosis,biopsy and a surgeon in 3 weeks!

The silver lining is that my TOS is alot better for the past few weeks. It seems like the less I go to PT (its beeen about a month),no massages just occaisional acupunture and feldenkreiss, and lidocaine /cortizone injections once a month. I do my exercises every day. Once in awhile I get a bad flare-up if I overstretch or am too stressed. when I went to see the surgeon I got a bad one 2 weeks ago.

I did ask dr. Aufiero if there might be any chance that the tumour has anything to do with the TOS ,because it might be heavy and my breasts are large. She thought it might not be out of the realm of possiblity. I think I will ask Dr. Jordan about this too when I see him again. I guess I will know after the surgery, and maybe I will end up with smaller breasts. Hah!