Hello,

My name is Teresa and I wanted to introduce myself to the group.

I have been recently diagnosed with Bi-lateral TOS.

I am here to try and learn more about this syndrome and what more I can do to try and manage my pain and get back some quality of life.

My story is probably similar to yours it includes but is not limited to daily pain, Job loss, depression, and major frustration trying to figure out what is wrong with me.

I take daily pain meds, muscle relaxors, and anti-inflamatory's.
I have done multiple tours of duty to Physical Therapy, acupuncture, chiropractic, and massage. I also wear a Spinal Q brace from 2-3 hours a day. All have some benefits, however they are fleeting and the pain returns when I try to get back to a more active lifestyle.

I am now in limbo waiting on a bi-lateral MRI of the brachel plexus (sp) as I am being told I cannot move forward with any shots until they have the images.

I would really love to here back from any of you as to what has worked for you and how you are managing your pain.

Welcome. I'm glad you found us. I wish I could say what has helped me but I haven't found it yet.

I just wanted to say hello. I hope you'll find support and useful information here.

Kelly

Welcome to Neuro Talk. You will find alot of information and help here. Many have TOS, and you will the get the support you need to find good therapies.
I hope in your case, that some resolution can be found. I wanted you to know that people on this site do care. Glad you found us. ginnie

That have the same issue and can understand what you are going thru so I am glad you all are here and I thank you for your response and your welcome.

It's great that you get some benefit from the various therapies you've tried. If the pain returns when you try to resume a more active lifestyle, perhaps you would benefit from taking it slower. I think it's pretty common among the people here that we sometimes rush ourselves because we want so badly to reclaim our lives. It's always beneficial to really listen to your body; if something causes pain, stop doing it if possible. There's no muscling through TOS.

How long have you had TOS? How did it develop?

Retake care,
Kelly

i so agree about not rushing! i broke my neck when i was 18 and i was in such a hurry to get back to my old self that i think i just hurt myself even more!!!! i now know exactly how important it is to take things slow!!!! and everyone here is so helpful!


QUOTE=kellysf;922593]It's great that you get some benefit from the various therapies you've tried. If the pain returns when you try to resume a more active lifestyle, perhaps you would benefit from taking it slower. I think it's pretty common among the people here that we sometimes rush ourselves because we want so badly to reclaim our lives. It's always beneficial to really listen to your body; if something causes pain, stop doing it if possible. There's no muscling through TOS.

How long have you had TOS? How did it develop?

Retake care,
Kelly[/QUOTE]

Hi Kelly,

Thanks for your suggestions and you are right I am learning that I cannot tackle what I used to all at once, I have to do things little bit by little bit and rest.

It is hard to say how long I have had TOS as I can look back over the years and see where the odd pains that I had were probably related. It was originally brought to my attention that I may possibly have TOS about 1 year ago and more formally diagnosed in Aug of this year.

I was told by the Doctors it probably developed due a few factors.
1. Several years ago I had a bad car accident when I cut my head literally half way off and my muscles and nerves were sewn back together.
2. Broken Clavicle that mended incorrectly from the same accident.
3. Long neck, droopy shoulders apparently makes me more prone.
4. Chronic Stress, depression and bad posture.

How long have you had TOS? What type do you have and how did you developed yours? Also curious as to what your major symptoms are.

Let me know when you get a chance and again Thank you for your post and suggestions.

Teresa

Hi, Welcome to the forum. I am glad you found this site. Everyone here pretty much has similar symptoms if not the same exact history of how they got TOS.

My motto is when you are feeling better is when you land yourself in pain again by trying to reclaim your life as it was before.
So remember all the do's and don't do's that you have figured out for your body, that keep you out of pain or make you go into pain.
( Somehow, remember them all the time!) That helps me a lot Also, my surgeon once told me that once you have TOS, and even if you are recovering well, you will always have about 20 percent of TOS all your life, so you always have to be cautious. I take that advice seriously as most of us TOS er's are hypermobile and go out of range easily and therefore go into pain easily.

Also if you put a general area where you live, it helps everyone recommend someone, since most people on this forum are very helpful and very knowledgeable and will guide you to the right PT or specialist to help you if they can. I have benefited tremendously from all the local people in Ca who have guided me in the right direction. I would have headed for another surgery, if it wasn't for them. God bless them all and everyone on this forum.

Theresa,

My TOS developed while I was working as an attorney. It was a very sedentary job but I was only working 3 days a week, so my story is kind of atypical. My symptoms began gradually. I have all the usual symptoms above the naval plus chronic headaches and frequent migraines (about 10 a month lately).

I had surgery with James Avery in SF almost 8 years ago. I developed scar tissue on my Brachial Plexus following surgery (shown on an MRI I had 8 months after surgery). Now I'm a chronic pain patient using Hydromorphone daily which helps some but not enough.

I'm glad you found us.

Take care,
Kelly

Hi Teresa,
Sounds like you got a quadruple whammy for TOS...

Did the PTs , DCs, etc, do any manual trigger point work, massage, low level laser therapy, e stim, rib mobilizations, posture/body work?

I also got these things for at home use

Digital IF stim & fist had a dial EMS stim - digital controls are much easier and no accidental bumps to a higher level like with a dial adjustment.
IF stim is less prone to give zaps/zingers.

Far infrared heating pad

foam roller/ Swiss exercise ball

tennis balls for floor or wall trigger work

Most of us do have to adjust our lifestyle & activities.
I know it mentally takes a lot to readjust & come to terms with it, but it's better to avoid those flares and sometime later on, you slowly can take baby steps to more activity.

Many of us have gone thru the 5 stages of grief, with any significant loss we tend to go thru those..