New and looking for support

[Zoe2005]

Hi everyone! I am a new to this site and just looking for others out there with my condition. I just feel so alone because no one understands my daily struggles as a person with TOS.

I have had TOS for 1 year due to a car accident and I am only 25yo. My symptoms are all on my right side. It took my Doctors 8 months to diagnosis my condition, so I have only done intense TX for the past 4 months.

Six weeks ago I had botox injections in my sclaene muscle on my right side, with a little improvement but no cure. I was told that the injections will only last three months. I am always in some form of pain almost everyday and when I do have a infrequent lesser pain day I feel as though I have received a gift from God. Sad statement, huh?

I am not sure what my next step in TX is. I know my Dr. was talking about prolotherapy. Has anyone tried this with improvement?

Anyone out there that lives in Washington state? or got TOS due to a car accident?

TIA!!

God Bless,
Zoe

[trix]

Hi, i got TOS from a car accident. We were rear ended in 2005. I have since been diagnosed with bi-lateral TOS and am going in for surgery on Oct.23 to have the right side done and Oct. 25 for the left.
My doc thought I was too far gone to benefit from much other than surgery. I see a chiro and a physio, and will do so once I am cleared to after surgery.
I wish you luck.
Tracy

[Melissa]

Hi Zoe. I am new here as of this week and was just catching up on some TOS patient posts. I am in PA, 41, got bilateral TOS from an mva, right worse than left. I am a nurse but had to stop working last year. disability denied. appealing. The accident was 5 years ago, but took 2 years to get right dx.

Anyway I have had almost all therapies, chiro, massage, accu, pt, facet injections, trigger point injects. nothing has worked, am now on oxy,perc,zanaflex,neurontin. My doc says surgery won't help, it's too bad.

What is prolotherapy?? I really do want to get better, can't stand being in pain all the time and being so tired from the constant pain and zanaflex! Anyone else try anything, I've been thinking hypnosis, nutrition therapy, anything new!? Melissa

[ginnybean32]

I too believe my TOS was caused by my car accidents but one must be predisposed in the first place. The way your body is built, if you have cervical ribs etc...I was misdiagnosed for nearly 8yrs on and off. I had surgery on my left side in November04 as it was worse. My right side got severe after another accidnet in Jan05. And no none were my fault. I ended up with a stretch injury to my long thoracic nerve and had to have more surgery in Houston. I live in Alabama. I had two carpal tunnel surgeries as my hands were wasting away...it didnt help...that was in 01 and 02. Many of us have gone through **** to get diagnosed have surgery and do well. It took me nearly 2 years to heal after my TOS surgery but I have. There is hope. With a good doctor on your side you can be pain free again.
I tried every therapy known to man before my surgery Zoe. I wish you luck and pray you wont need surgery but many of us do. Melissa you may want to consult another surgeon on their opionion if you could benefit from surgery.
The colorodo doctors are very gifted and Dr. Annest will not do surgery unless you clearly need it. IF you are able to travel to Co. I would highly recommend it for a second opinion. You can even send all your records to him by fax and have a free phone consult. Before giving in to this beast and just existing in life due to TOS, both of you fight. It takes that...dont give up on a better life for yourself.
I nearly did and it nearly killed me, my marriage and my relationship with my kids. Good luck to the both of you. Amy

[dabbo]

I too am new here, and am looking for support. I've not had a definitive diagnosis of TOS, but from what i've read, that can be hard to come by. I'm only 25, and started noticing symptoms like 6 months ago- which was like 6 wks post-op from shoulder surgery. Looking back on it though, I remember specific pains over the last 12-18 months that I would now associate with whatever the heck is wrong with me. I can't think of one specific event (ie: car wreck) that would have caused this; my doc surmised that my SLAP lesion may have masked the pain from this other stuff. I've been to see 2 neurologists (had 2 MRI, EMG, conductivity tests, etc), a pain management specialist, a vascular/thoracic surgeon, and am supposed to go see ANOTHER neurosurgeon here shortly. Thank God for insurance. The pain doc has helped with meds and trigger point injections. The med that worked best (Lyrica) - well, i had an allergic reaction to it. so p.o.'ed about that one. Top it all off with the fact that I have a 2mo old daughter :D (so much joy!) which cut into what little sleep i manage to get, and this whole mess is overwhelming. I don't know that the people i work with realize how much this gets me down, that its not just something you can laugh off- although i do try to! sorry to vent, and not sure where to post this. glad i found a place to read up and chat w/ people about what i think i might maybe have. any ideas, suggestions, critcisms, whatever is always welcome. - dabbo

[DiMarie]

I am a car incident too, my car was stopped I was half in half out when hit and threw myself from the impact.

My daughter was only 16 when diagx with TOs and it took eyars before a diagx.
We are in N.E. PA. She was first diagx my Dr. Robert Schwartzmann in Phila Chief of staff of neurology at Hanahmann hospital.
Not only trying to get credibiltiy recognition from family, friends and co-workers, it is very difficult to even get a medical person that can correctly and "believ" in TOS.

When I found the forum I catually cried when I found so many people that actually understood what was going on and the pain and wacky symptoms.
I gues it was then too I began to realize this was going to be life long even if it reduced symptoms or went into a remission.

Welcome here as we share learn ans support each other.
Dianne