Sometimes you just have to bite the bullett and do it.
I'm sure there are success stories. I'm sure of that. I just don't feel I would have been better off for it. Had I got to the right surgeon first -- Dr. Atasoy in Louisville, then there's a high possibility I'd laid down right there.
I asked to have it done bilaterally and the first surgeon said, "Are you out of your mind? Woman, you have to take care of yourself." ----- 1st surgeon did not recognize or include my scalenes in his diagnosis so it would have been unsuccessful... I'm sure of that too.
And, of late, here on this forum, I realize I have pectorialis major and minor issues. So, guess what? If I'd agreed and went ahead in 2004 or 05, it would have been a failed surgery too. So they're getting better at it. I'm sure they don't like these outcomes any better than we do... well, they're not living in it every day, 24/7.
I have read success stories. I have read about relapses. but in your case, sounds life-threatening. If that issue goes away, then you can deal with what comes later.
You surgeon's office should have a lot of after care info for you to read over. Maybe now is a good time to ask for their instructions. You can do a lot of preplanning, making lists and even practicing the many tasks of taking care of a postop family member.
It's scary, I know. I would be anxious about everything but sometimes you just got to do.
I pray you recover Godspeed.
Quote:
Originally Posted by o2bponca
I totally agree and would tell anybody else facing this condition and situation the same advice. But, in my case . . .
This is my 7th opinion (phew! - and that's taken almost a year). I've talked to Dr. Sanders, had all my imaging and tests (including xray, CT, MRI, angio and ultrasound), seen an internist, vascular and thoracic specialists/surgeons, a cardiologist (b/c I have tachycardia and transient hypertension also, supposedly as a result of the TOS causing a small aneurysm of the subclavian artery at the brachial plexus), a neurologist, and now the 30-year cardiovascular surgeon with several hundred of these surgeries under his belt (of course, usually for neurogenic TOS).
I've done 3 1/2 months of PT with zero-relief and change. I'm going on 11 months of research and trying to avoid having surgery. This is a drastic measure that I don't take lightly. There is no way I would subject myself to such debilitation (even if only temporary) and likely life-changing surgery without serious consideration.
If I was dealing with the neuralgia only, I would certainly be adamantly looking for other ways to deal with the pain, trying other medications, and looking here on this forum for all of the great ideas for pain relief, etc. But that is the least of my worries with an arterial aneurysm forming, tachycardia, hypertension, mild chest pain, venous congestion, and my hand turning dark purple after taking BP.
The surgeon said I don't have to do the surgery now, but I will have to do the surgery. He said it's elective until the day they take my BP and my arm does not return to a normal color due to a blood clot and then I'm rushed in for emergency surgery to try and save my hand and/or arm. And that's if I'm lucky enough to have the clot in my hand/arm, and not on it's way to my brain.
All of this considered, I am opting for the surgery. I am 38, have a husband and 5 children, and choose not to mess around with blood clots and the risk of stroke. Doc says he can't even give a decent prognosis until he's in there. He plans to do the rib resection and scalenectomy, remove any scar tissue, and repair the subclavian artery and any other damaged vessels with stents, etc.
Unfortunately, I don't know anybody with these same vascular issues who has had the surgery and can offer their insight about how their procedure went, and some idea of what I can expect post-op (like time in hospital, initial and long-term recovery at home, success of outcome, etc.). I understand that every situation is completely unique, but just trying to get at least a vague idea.
Thank you so much for your input - and any further input too! I'm so thankful for this forum!
Carrie
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