Need Help In Texas

[Jo*mar]

A few members have had anomalies found or extra things that an expert surgeon's skill is definitely needed to fix those issues once they get inside.
Like an extra bony growth, vein or nerve wrapped around something, scar tissue, adhesions...
Just thinking , that those cervie ribs could be causing problems more after all this time due to rubbing and irritation, scarring, maybe some posture changes over time increasing the problems..


It's probably good none of those drs suggested doing any surgery on you. You should look for expert surgeons to handle this.

If you have friends or relatives in other states we can possibly come up with more TOS dr names in those areas if you are considering traveling.

[astern]

I had to travel for competent surgery (to Denver) from FL. I had my TOS surgeon call my GP and PT to explain what needed to be done for my recovery. This was handled PRIOR to surgery - so that I would be confident that there would be proper care for me.

You can do this too!

I'm sorry your Dr. gave you a 'goodbye' via the nurse. I've had that happen to me a couple of times. On the plus side, you had some Dr's tell you surgery was needed, but they would not be the ones to do it. That's great news as your Insurance should cover surgery - even if you have to travel out of state. Insurance companies would rather pre-approve your travel for specialty surgery, than have to pay for re-do surgeries - or worse.

Good luck!

[josepentia]

Don't dispair!! What kind of insurance do you have? There is a FANTASTIC vascular surgeon here in Tucson, AZ that made me 100% symptom free (surgery on my left side only) and I am a year + out from A/VTOS surgery!!! I will be scheduling my right side surgery for the end of the summer/early fall of this year if I'm able to wait that long- timing with a newborn is hard these days!

Your insurance company will be willing to send you out of state, though the closer to your home location- the better. Keep us posted, and keep motivated!

Jocelyn

[LosingHope]

Jocelyn -
That is wonderful to hear, that you are symptom free! I've heard so many horror stories about people who have ended up worse after surgery than they were before, it is a relief to hear that yours has been a success! Who is your surgeon?

[josepentia]

A/VTOS surgeries typically have a better success rate than those with Neurological involvement. I am fortunate (if you can even say that) that I mainly had/have vascular issues requiring the surgery. I did not have cervical ribs, however. My surgeon is Dr Michael Lavor- http://saguarosurgical.com/ He is EXCELLENT. He spent a great deal of time with me, went over all of my previous testing/results, and ordered a new viewing ultrasound of my vascular anatomy to confirm the diagnosis and also to be sure that there is was not a differential diagnosis also causing the same symptoms. The ultrasound was lengthy and thorough, completed in house for immediate results. I saw Dr Lavor right afterwards, discussed the results and created the surgery and recovery protocol. I have been a military spouse for quite some time, and he happens to be Navy reserve, so I can appreciate his background and approach all the more! He and his team are fantastic. Do a search for my posts, I go into detail about my symptoms, testing, surgery and post op experience. My left arm, is a new arm. I kid you not.

If there's anything else I can help with, please let me know!!
Jocelyn

[LosingHope]

Update - I have an appointment (and tentative surgery, assuming diagnosis confirmed) with Dr. Pearl (a protege of Dr. Urshel) at Baylor at the end of July. Fingers crossed he will be brilliant and this will go much better than my last referral. There sure is a lot of "hurry up and wait" with TOS. Still, I've been coping for years, so what's another 6 weeks? :-/

[jkl626]

Originally Posted by LosingHope

Update - I have an appointment (and tentative surgery, assuming diagnosis confirmed) with Dr. Pearl (a protege of Dr. Urshel) at Baylor at the end of July. Fingers crossed he will be brilliant and this will go much better than my last referral. There sure is a lot of "hurry up and wait" with TOS. Still, I've been coping for years, so what's another 6 weeks? :-/

Good Luck! Is Dr. Urshel Retired?

[parbie]

Originally Posted by jkl626

Good Luck! Is Dr. Urshel Retired?

I don't believe he is, I just spoke with his assistant yesterday and she asked me to e-mail the details of my symptoms, past treatments etc. so he could have a look. Waiting to hear back, hopefully soon!