An Open Letter To Every Single Person Who Has Never Even Heard Of TOS, or has heard of it but has no idea what they are talking about.

STOP GIVING US BAD ADVICE!

i am so sick of people telling me what they think i should do. they have no idea what i am going through. and stop looking at me like i am a crazy person.

**Please list all the bad advice you have been given here**

So so true. I wouldn't know where to begin. I had so many people tell me to try this or that, and at first I tried it all. Tried all different kinds of vitamins and minerals and different massage techniques. It is a very crazy thing this TOS, and most do not understand. I remember going to multiple doctors who looked at me like I was crazy. I remember the first time I seen the nurse in the vascular doctor office, who knew exactly what I was talking about and I turned to my wife and said "see I am not crazy". My wife later told me she was starting to wonder if I was losing my mind because it seemed like every week a new symptom had started.

yeah at work this woman keeps telling me "you can do it."

for making this web site.

it really ****** me off. unless she is in my body, nobody can tell me what i can and cannot do

The bad advice I had was from my old vascular Dr who is way too conservative and told me not to do ANYTHING and to get my disabled husband to do everything arghhhh

It's easy for him to say that but my husband also has restrictions on what he can and can't do.

Compared with my new Dr I wouldn't send my worst enemy to my old Dr. He just wants $$ for consult for doing nothing at all and not even giving suggestions on PT etc......

I actually had a 90 year old man tell me, when I said I was in pain most of the time, "you have the wrong attitude. think positively".

yeah. like positive thinking is going to repair the nerve damage, cut muscles and scar tissue. I just walk away from people when I hear things like this. Explaining or arguing is fruitless.

I can't list all the bad advice, hysterical laughing and crying situations I've experienced during this journey, because my friend and I are writing a book and we have many chapters to fill. I think we've surpassed a novel and now sit at biblical volume!

For laughter sake, I will share the one I experienced today. It will fall under the "Here is your sign to Run" chapter. Seeing how my savior of a PT is out of town for about 8 weeks, I was referred to another PT in her absence. How I got referred to this PT is another chapter in the book entitled "Don't ever see a husband and wife healthcare team as you are S-O-L if they have a nasty divorce."

I've had about 6 visits with this PT and her partner, but was planning to dump both of them after this visit today. Gut instinct speaks volumes! When I wander in today, useless PT #2 says she has no definitive diagnosis on me. I tell her, "I made my initial appointment/consultation with a Thoracic Outlet diagnosis and not much has changed in the last couple of weeks." She says, "Hold on a minute and let me Google what that is." After I hear computer keys clicking and I sit smirking with foul, foul language floating in my head, she reports back to me that all she "has to relax my scalenes and get my first rib down." This woman states and looks like she has been in the PT profession for 30+ years. You know you've reached rock bottom when they're Googling your ailment in front of you. RUN!!!

You should have been, you didn't read that from a posting of mine did you? I could have just told you! hahahahahha.

HAHAHA!! Isn't that the truth!

That is to FUNNY...I had one PT excuse herself to look something up and consult with other PT in room. Recently my wife start PT for a shoulder issue, and I told her to tell my PT hello and that I would be back in a few weeks after my surgery. My PT was talking to my wife and the one overheard them talking and walks up and says "your husbands case is a crazy one" My wife and my PT just laughed her off.

[QUOTE=Anne4tos;900926
I've had about 6 visits with this PT and her partner, but was planning to dump both of them after this visit today. Gut instinct speaks volumes! When I wander in today, useless PT #2 says she has no definitive diagnosis on me. I tell her, "I made my initial appointment/consultation with a Thoracic Outlet diagnosis and not much has changed in the last couple of weeks." She says, "Hold on a minute and let me Google what that is." After I hear computer keys clicking and I sit smirking with foul, foul language floating in my head, she reports back to me that all she "has to relax my scalenes and get my first rib down." This woman states and looks like she has been in the PT profession for 30+ years. You know you've reached rock bottom when they're Googling your ailment in front of you. RUN!!![/QUOTE]


this happened to me too,but then the dr, a well respected neuropysiologist said that TOS is so rare that he didnt think I could have it!