Damage during VATS surgery

[dshobbies]

Judy,

Here's hoping you can look back at this time in your life as your 'surgical era' and never have to deal with anything like this again. Twenty or so years ago I recall only being hospitalized for giving birth. Now I don't even want to count the surgeries I've had (really not all that many). Even if the surgery fixes whatever as intended, getting over the surgery takes a lot out of us.

So if this works, your era is done, finished, over, caput and you can finally get on with your life. My fingers are crossed. When is your surgery?

Dale

[Maria]

Go girl while you've got that steam! It's exciting to read that you have that much possibility of improvement! Am looking forward to reading more and am cheering for you in my little corner of So.Cal! Go Judy, go Judy, go Judy!!!!

[jsewell]

Dale, i am not sure about this being the end of surgery , i still have a few more problems to deal with .
Maria thanks for the cheering on, from my little corner of so,. cal. Sierra Madre is a really little town.
judy

[jsewell]

My pulmonologist derailed any hope of having the nerve surgery. I had a message on my phone on monday saying that the neurosurgeon had spoken to my pulmonologist and they had decided surgery was not a good option. My pulm. has never been for even finding out if the nerve was damaged. He keeps going back and forth blaming other things which have been corrected. Like my severe kyphosis. He just keeps saying my problem is ventilation. No kidding, i can't get enough oxygen in and everything works fine. Except my diaphragm muscle and my phrenic nerve. He just won't accept that and told me the surgeon would do more harm than good.,
He is used to handling nerves so i don't know why he would say that. I cried all day monday and little bits yesterday and today. I spoke with both doctors on monday and was sill kind of in shock and did not ask the right questions .
Oh i was so looking forward to breathing normally again. And having energy. I am told i am so tired all the time because i use all my energy to breathe.
life goes on and i am lucky for that.
judy

[Maria]

Judy,
Sorry to hear your pulmonologist didn't want to support the decision for surgery and at this time has dashed your hopes. Do you think perhaps you'd consider getting several more top calibur pulmonology consults to see what another pulmonary person might say? Not that you'd want to switch specialists though just wondering it as it seems worth checking out if you're able.

I realize this specialist knows your case and must have your best interest in mind (being able to breath on your own however limited) though I wonder if he is also staying in a comfort zone and the other surgeon most likely wouldn't proceed if your Primary specialist isn't going agree. Not that another pulmonologist would agree either although maybe have a more open mind or have some experience w/this (somewhere in this country or another)?

This suggestion might not even be viable considering it takes so much energy for you to breathe let alone do other things that take energy re travel and such.
I know I'd be bitterly disappointed as well altho hopefully be glad to be breathing as well. I'm hoping something will work out for you on with this.

[Hooch]

I'm so sorry to hear it Judy.

I don't pretend to understand any of the issues involved with the phrenic nerve, but if you've been misrepresented by your specialist, I hope you can get that sorted at least.

Hope u are ok.

[jsewell]

Thanks for your kind words. i was already to seek another opinion from someone i saw last year. Then i received a long email from my pulmonologist. He told me that the neurosurgeon called him and told him he did not think he could help me . I have had the VATS and lung surgery in through my chest and there is more than llikely lots of scar tissue in there. Everything would be healed and the nerve most likely really embedded in it all, so to try to decompress it at this late time would probably do more damage than good. It helped me put the fixing it to rest although i am still very upset. no one would listen to me last year when i said it had to be the nerve. DrRegan kept saying nothing happened (immediately after he removed the disc at T7-8 he had problems with me breathing!) If he had been man enough to help me figure it out after it happened, maybe then it could have been repaired. Now it just makes me madder at him.
Thanks for letting me vent, i'll stop now!!
thanks again
judy