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Old 03-13-2008, 07:51 PM   #1
Wymom94
Senior Member
(female)
 
Join Date: Feb 2008
Location: California
Posts: 193
Wymom94 HB User
back-to-back surgeries scheduled -please chime in

Hi, once again I'd love to hear from the experience everyone here has and am completely open to advice, opinions, shared experiences, thoughts, criticisms, etc. I went in with my husband today to see the neurosurgeon I decided to stick w/ (the 3rd of the 3 I've consulted w/ --saw him last week alone). He went over everything again, named the surgeries (ya'll were right, it's an ACDF for the neck, decompression laminectomy for the lower), and spent a looong time w/ us. He had the ACDF himself last year performed by a colleague, with the same procedure details he's set forth for me, something that meant a lot to me to know, actually. He reiterated for my husband that he feels surgery for my neck is actually critical and shouldn't wait even until June (said, it's not so urgent that it's like I need it tomorrow, but it shouldn't wait 'til June or July, needs to be done soon). He said my compression on the spinal cord is extremely severe and doesn't want to risk further damage, was pleased my symptoms aren't as bad as they could be and would like to avoid even worse symptoms beginning (which, he feels, is precisely what would happen and not before long at all, hence the urgency). He said that, eventually, I'm even at a real risk for paralysis from the neck down based on how severe the stenosis compression already is (didn't offer that up 'til we pressed for the outlook w/o surgery or w/ a lesser alternative). He said that wasn't imminent, didn't want to scare me, but that it was where things seem to be headed down the road (w/o the surgery or w/ less invasive procedure options). We discussed timing w/ him further b/c my husband may need GI surgery (minor, not major, but still involving recovery time) soon and our son is due in April from some medical tests (minor) and 'tracking' appts and then in June for medical procedures and more tracking appts. Not waiting 'til July for my surgery is a, well a 'bother' for us. He understood, felt bad for the timing, but said he wouldn't feel confident letting me go 'til then. He mentioned that it's not unheard of, but is not at all common for someone my age to have such a severe problem already (w/o injury) -even with a congenitally small spinal cord and was concerned that I have such damage already. He said his personal stats with performing this surgery are close to 90% (success), but wanted to be clear that success did not mean a return to full function or zero complications --it meant a halt to progression, likely return of at least some functions lost if not many, and possibility of minor complications (most likely being difficulty swallowing for some time post-surgery --more rarely permanently). He said he rarely has serious or permanent complications, but they do occur and that he rarely has no improvement in function post-op, but that, too, is a small possibility. And, he did go over the rare, scary complications (yipes to those, btw). He felt my age was on my side for optimal recovery and my health (immune system, too) were not a 'ding' for my recovery either. He is having several tests done pre-op to further 'clear' me and make sure things are a 'go'. He had me do 1 more between last week's and this appt, actually -to further illuminate which type of surgery or treatment would be best (checking his work twice, so to speak, before handing it in). He feels the lower surgery is not at all urgent in terms of risk, like the upper is, but understands that I am quite sick of not being able to stand and walk well and since it is a compression (of the nerves) that would require surgery for optimal outcome (again, according to him, lesser alternatives not being the best for my situation) he thought I might want to get all my recovering done in one full swoop by putting the surgeries 6 weeks apart rather than several months or a year apart (did feel I should have the lower surgery within a year if I elected not to go back-to-back). We discussed a LOT more, but it boils down to my husband and I having scheduled the back-to-back surgeries. Although, I don't yet have verification of the stats he shared (I'm going to get this, though), I HAVE checked this neurosurgeon out (more than I did the other 2 I consulted with) and feel confidence in his skill, ability, and even his 'agenda'. (Confidence in his skill doesn't necessarily equate to ease w/ the idea of surgery, though). I feel pressured to get as fixed as I can be as quickly as I can b/c of my son (and manging his health issues) and wonder if I'm moving too fast. On the other hand, I can't stand the changes that I keep having to make, some over the course of 2-3 yrs, others being more sudden (what seems like 'sudden' to me, anyway) -and I'm afraid I've moved too slow w/ this. I read the 'before you have fusion surgery' thread and it left me as 'split' in feeling as I just mentioned. Half freaked, half calmed (the one post, neckpatient I think it was, about how fusion surgery is necessary for severe stenosis calmed me, the laser success story made me worry I'm making the wrong choice). The Dr being so deeply concerned w/ the urgency of my neck, was not calming (in the least). The other Dr who read my cervical MRI was willing to wait 'til summer, but I didn't feel the confidence in his skill, ability, etc that I do with this neuro and, in fact I spent more time w/ his PA than w/ him. The Dr I've picked and the first one I saw both spent time w/ me directly and did not use a PA for most of the consult like the 2nd one did. That first Dr I saw only read my lumbar MRI, though (hadn't had the cervical yet --it was his recommendation that I do after having talked to me). Hmm, maybe I should check in w/ that one again and get his opinion on the cervical and how urgent he feels it is?? When do you "Know" you've got the right situation (pre-op --obviously, you'd know post-op if it turned out beautifully)? And, anything anyone wants to comment on, question, add, share, advise, etc, PLEASE do.
I'm scheduled in latter May for the lumbar, in 4 weeks for the ACDF --and the surgeon does want to use cadaver bone even though we'd discussed a bone graft to help keep my suitability for being a living liver donor for my son (years from now --he's early stage liver disease right now at 13, not progressing rapidly at all). Dr feels I have a better chance of success with the cadaver due to a 30% risk of infection and other problems w/ the hip graft. He understands and agrees w/ my parental priority, but said he wants me to have the best chance for success and, after reviewing, did not feel that would include a bone graft. I contacted my son's pediatric Hepatology team at UCSF and discussed this w/ them in email (the senior member of his Hep team is also the pediatric liver transplant program head --and knows the adult protocol, too, of course). They also want me to do what would give me the best success and said we'll go from there. I think I'm comletely ditching the Cleveland Clinic idea (for myself, still going for my son --but not so soon now).
Sorry for the length of this post. I have everything swimming in my head and am going in hyper mode w/ it all. Hyper Meghan can be a scary thing.
Thanks for lending an ear,
Meghan

 
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