Newbie,,,short notice need answers

[PepsiDoodles]

Thank you Maria, got a hold of the ASAP.org foundation, going for another opinion,,,read where the disc's can be totally replaced with no need for fusion if there is an option to that I am taking it, but think fusion is to move c2 back into place as it is at a bad angle right now,,don't know but going to look into it..

[Maria]

That sounds good. I've not heard of that organization before so will check it out. Sounds like artificial disc replacement re replacing discs vs. fusion?

Good luck.. good to check things out while you're still able to (a fact I learned post a failed surgery) although I do understand emergency surgery or surgery done for certain reasons (that practically mandate surgery to try to preserve basic function) is different than elective surgery...

[PepsiDoodles]

I read extensively last night, and the fusion will for sure leave me unable to swallow considering I have esophagus problems already, but the surgery will end it,,,,,,another thing,,,,,,in the state of CA, Dr and medical universities do not offer the same services as others even though they take the same insurance! For instance, UCSF provides 3 weeks of in home nursing care after this type of spinal procedure with same insurance where as UCD provides none! And so on, same with procedures,,,so going to see what options are out there,,,have read that the total disc replacement is not done on more than 2 discs in same area,,so don't know it that has changed or?? But am looking into it as from what I read, people with swallowing problems that had this type of surgery had no problems after their surgery about a week post op were still able to swallow as before,,,so yes looking at any and all options while I can,,desperate for anything better!! I did hear from Mark, will speak to him this weekend, and he knows a gal who also has my condition syringomyelia who had surgery also, and she is doing great,,,not that way for everyone I know, but gives me a little hope now! But the biggie in CA no matter what insurance you have, you need to shop around, as a specialist in the same field does not have to offer the same or better service as another specialist will, so worth the phone calls!!!!

[Maria]

That you've spoken to Mark and are checking things out. Sometimes even with checking things out we make same decision as if we hadn't tho at least what I learned from own experience is that I was way more at ease with myself and my efforts re whatever decision at least when I felt I made the effort to check things out more thoroughly.

I didn't do that with 2nd spine surgery and it was a really horrible failure and I was just not in any way prepared for that. Took me years to stop blaming myself for the decision I made re surgery as only I really lived with the repercussions of the outcome ( and probably my poor parents that felt my emotional pain near as deepas I did or deeper).

Continued support and best wishes for all thru your process/endeavor/journey. Mark is a wonderful person to connect with thru a spinal journey and esp if you're alone.
Maria

[PepsiDoodles]

Thank you so much Maria! Yes, he is very resourceful and knowledgeable also!!!!! Talked to a friend in So CA a few minutes ago, had almost as much as I am having, but said same, when she saw what this doc wants to do, run for another opinion! She said wished I lived down there as could have her surgeon do it, and he is very good,,,but am 600 or more miles north of there! And have hard time getting around here lol! Anyway, thank you for your support and help, will let you know what way it goes,,, and yes, parents will feel as much pain if not more knowing their children have to suffer so.....I have no children,,but watched my mother cry for me many times over the years,,,broke my heart to see her cry...miss her every day, she died in my arms almost 7 yrs ago, still seems like yesterday..........back soon when loaded with better answers I HOPE xxoo

[Maria]

well you might want to give Dr. Coufal's office a call and see whether he would see you (or talk to Mark about this possibility). Would be well worth the consultation if he'd be willing. It's a trip down south to La Jolla and right outside of San Diego. Super nice area.

My first ADR consultation was with a surgeon at UCSF (I used to work there in Neurology and Neurosurgery back in early 80's!) around 2003. I had just moved to Florida for a year and half and then got that consultation at UCSF thru WC.

Anyway good luck with other consultation. Keep us posted!

Maria

[PepsiDoodles]

Thank you Maria, no way to get down there though! Wish I lived in FL!