[momzpeachy]

Hi all

I thought I would let you know that I really am glad for the internet! I did all the research on TOS and got myself where I need to be. The other quacks I was going too couldn't manage it. They were clueless so I took my health into my own hands and I'm glad I did.

I ended up going to Philly for all my care. Thomas Jefferson Hospital has many specialists and they are very good. My appts were quick...never had to wait! I got right in and right out. I have liked all the Dr's I have seen and everyone has been very helpful. I have not getting fed a bunch of crap. Thay have been very honest and doing the appropriate testing to get me diagnosed. I found a Vascular surgeon on the internet who is very experienced in the TOS surgery. You can go to jeffersonhospital.org and then type in thoracic outlet syndrome and you will get information. You will see that Dr. DiMuzio (the chief of Vascular surgery) has written papers on TOS. I saw him last week and will be seeing him again next week to discuss and schedule the surgery. I liked him a lot. He was honest and straight forward. He also sent me to a PT first! He works directly with this PT. He knew that he would be able to tell on the 1st visit if I would need the surgery. He was right..he could tell and I do need the surgery. I was with the PT for an hour and a half and he too was honest and explained everything. MORE THAN ANYONE ELSE THAT HAS BEEN PART OF MY CARE FOR THE LAST YEAR EVERY HAS! He made sure I understood everything. He truly felt bad about me having to have the surgery but he explained my options. None of my options are good but the surgery is truly my only option...that is if I want to actually function in life...and being I'm only 35...I can't give up.

I have had 2 c sections, 3 laparoscopy's, a hysterectomy, 2 eye surgeries and I used to mountain bike...emphasis on used too (which really ****** me off) so yes I'm tough ...I can do this...I will get through this. I want to bike with my husband again (I doubt that will ever happen) but I'm hopeful. I have a high pain tolerance but I'm having a hard time keeping up at this point. I am glad for this site and all the communication. I need someone to talk too...need friends. I feel lost in all this and I'm just so mad. I can't even drive much anymore..not much I can do which makes me cry. So I'm here on the couch with lots of pillows, blankets, gloves and my laptop. I hope to stay in touch...

Good night all! Oh, and if any of you want info on my surgeon or the PT I saw...please message me and I will be glad to fill you in with all the info and contact information.

[Jomar]

Sorry you have to go through all that , but sounds like you are on a good path with a good team now.

[mtnmom]

Its really nice to have a doctor who you trust. I wish you the best with your surgery. I bet you'll be able to get back on that bike in no time!

[astern]

It's a shame that we HAVE TO take our health care decisions into our own hands before we get the kind of care one would expect in America. But when we do... we CAN find a great team of knowledgeable professionals.

Sadly tho, not every state has teams such as this.

Sounds like you are doing everything you can momz, I hope you will be back on that mountain bike - but don't be surprised if the steeper, tougher runs are bad for you. Take the recovery VERY slowly for best results!


Anne

[johannakat]

glad to hear you've got yourself a good doc- makes all the difference in the world.

Have you been able to use this info on your w/c claim? Has that been going ok?

warm thoughts...

Johanna