[Triste]

Hi- I haven't been on the forum lately due to severe disabling problems following my TOS surgery 3 years ago with Dr.*** at California Pacific Medical Center. Some friends helped me to start a website to show my injuries and tell my story. It is not complete yet--but I wondered--did anyone else get as mutilated as I did? Do any of you look like I do now--i.e. due to surgical outcome. I've been thru a horrendous experience and I never really had real TOS until now--bilaterally--both sides and SEVERE neck and spine problems now as well. Thank you.

[DiMarie]

Triste,
I have been a forum member since 1997, met hundreds of tosers from our support forum, traveling to the area for consultations. I can say I never met anyone that had deformity to your extent. I did meet one with winging from a damaged long thoracic nerve injury during surgery, surgery was not by a top know doctor. I have a dear friend that nearly died on the table from a bleed and structural area found that the doctor from Hershey Med. center, not a tos specialist, could not manage.

Many people have to go to doctors in their medical coverage. I fought for my daughter to have her surgery out of net work and son to have a consult out of network as there were no surgeons that specialized in this field.

Because of surgeons that may get into a surgery and encounter something they never expected, bodies that have adverse reactions not typical, and even people that have anomalies so rare, there can be devastation side effects.

that being said the majority, massive majority do find relief from treatments and surgeries that you had devastating affects to. I can't even imagine what your daily life is, but what ever it is one has to make the most of it.

It is going to be the only life you have, you have a choice through some great doctors, physical and mental to grab what quality you have, stop dwelling on the loss and pick up the boot straps fix what you can, accept what you cannot change and have a better day tomorrow then today for it.

Even if a life is homebound, bed bound, there are OT people that can come into your home to help.

Find the quality of life that is what you feel you can achieve and aim for it. I never would have gotten on with my life without my psych that dealt with chronic pain patients. I could whine, morn and then after a near year of it, it was a peak of life coming out, I decided to rebuild my life.

If there are 50,000 people with TOS that have need of treatment and you were the one that had these most sever reactions to everything, not just one thing, should they all not have treatments or surgeries?

Sometimes an emotional life can been lost to TOS, its pain, limitations, don't let it consume you. If your arm had been lost in an accident you would learn a new life, you have permission to do that....don't let your life slip by.
When you body is disabled your mind has to bear a huge new load, if you lose parts of your mind to the syndrome all there is left is your soul....when the syndrome sucks your soul from you, there is nothing left to fight with.

Don't lose faith, for the sake of you family, loved ones and your self, find a way to cope with the lousy hand of cards you were dealt.....

Get a team of providers on you treatment.
Get the most of new everyday, life is precious.
I am keeping you close in my thoughts and prayers for some kind of relief.
Dianne

[redjpwranglergirl]

DiMarie hit the nail on the head- I don't think it could've been said better.