Scheduled my surgery, Sept. 1st

[Debra JGL]

Hi All, I’ve booked for my surgery, Sept. 1st , 2010. After lots of consideration, doctors visits, tears, fears and now hopefulness the time has come. At some point not that long ago, it hit me that I want to be on the other side of this surgery and the only way to do that is to go through it. I saw Dr. Boachie last Thursay and was able to schedule my appt., but it still isn’t decided how long the fusion will be, whether it will be selective or longer to include both curves. It seems as though my spine has “shifted” and the end point vertebra for the selective fusion isn’t in the midline so the selective fusion might be off the table, so to speak. Then, he had me xray’d with a heel lift and that put the end vertebra in the right spot, but I’m not sure what that means. He wants me to have an MRI as well. I left the appt. feeling very upset and confused. I feel like everytime I go to the doctor there’s something new that I’m unprepared to ask questions about. I must admit I cried for a long while, but I think some of it was just the reality of the surgery hit me. I did email him some of my follow up questions and waiting to hear back. But, I feel good about my decision to go ahead with surgery, regardless of how many levels get fused, there are pros and cons to both. I’ve lived with back pain, hip pain, mild restrictive lung disease, and an increasing physical deformity, the time has come. Now to start to tell people, (you all are some of the 1st) I’ve decided I’m bringing my xrays along with me when I tell people I’m having the surgery. People tend to think this surgery is extreme, which it is, but pictures speak louder than words. I told my inlaws and they began trying to talk me out of surgery again, so I got out the xrays and showed them and they said “you gotta get that taken care of”. I recently told my kids, 10 and 13, and they were very supportive, as they’ve seen the xrays too. My son looked very serious, and I asked him what he was worried about, he asked if I was going to get taller than him again (he just recently passed me in height). I know I’ll have a lot of questions over next couple of months, and beyond. I still feel as grateful as I did when I first found this forum, to not feel alone or the only one with this problem. I know we all make different decisions about how to treat scoli., but we have so much in common, it is very comforting.

[Confusedmom]

Congratulations! It must be a relief in many ways to finally make this decision. Many of the things you said make perfect sense to me, so I think you're headed in the right direction! I totally feel for you with the in-laws. Mine have been pushing back hard with me even just contemplating surgery, so much so that I had to buy them their own copy of the David Wolpert book. (As if we need people fighting this when we're trying to summon the courage to do it!)

Evelyn

[debbei]

HI Debra,

Congratulations, it’s a big step. Of course you know you’ll be in very good hands with Dr. B. I think most of us have MRI’s before this surgery so the dr.’s can see exactly what they need to fix. Be prepared—other friends/family will probably try to talk you out of surgery too. But you did the right thing—whip out the xrays and they will get it. Until others truly understand the state of our spine, they can’t comprehend that we would willingly go for this seemingly brutal, crazy, life-altering surgery. But the truth is, it’s life-altering in a GOOD way, not bad. Feel free to email me if you want to talk.

[foofer]

Hi Debra,

Congratulations on your big decision. Sounds like it is the right time for you. I would think that your kids are at a good age for this- old enough to help out a bit. It's nice that you have your inlaws on board- good idea about the x-ray presentation. They pack a wallop, don't they?

I'm curious as well about the selective aspect. This is something I would like to know more about- why a skilled surgeon decides to include or exclude certain vertebrae or whole portions. Dr B told me that same thing at my last visit last September. His criteria for me at the time was my bone density- we could leave the thoracic alone if it was good, but would have to include it if I had low bone density. Turns out I do have osteopenia so I guess that would be the Full Frankie, as I like to call it. I'm in a holding pattern for surgery and he thought I was not in the ready zone as yet. (Gotta wait til I have more pain, gotta try not to get there...)

Interesting about the x-ray with the heel lift...I had never heard of that, but it's something I think about when I get an x-ray. I have a longer leg, usually wear a small lift in my shoe, and am always tempted to hike up my left leg during "my photo shoot", but I never do. I just stand there and let the whole bod collapse into where it wants to go. It would be interesting some time to see what different x-rays would look like when the same person adjusts their posture slightly. (Except for the radiation consideration. )

Most important, in the end, I believe that a surgeon as skilled as Boachie will choose the final course with great care and consideration. If it were me, i would say- It's your ballgame, your pitch, you decide....unless he gives you a choice. The times that I have seen him, I would not hesitate to let him do his amazing thing and set you on the straight road!

Let us know what your email questions reveal, send lots of posts, and we are here for you!!!

[Debra JGL]

Thanks for your support ladies. I did just hear back from Dr. B, and he said with the short fusion I would need to wear a heel lift after surgery, maybe indefinately. I have never heard of this and I can't find anything out on the net about it. I'll put a post out and see if anyone else has heard of this. Amy, I think the surgeons want to fuse as few levels as possible, so if they have good reason to believe a compensatory curve will correct itself and the rest of the spine will stay in good shape, they leave that curve unfused. Surprisingly the doc. seems to be leaving the decision to me at this point, but the mri will probably shed more light. The options right now are between t3-t11 or t3-L3. Ugh, big difference. L1 & 2 are not in good condition and he doesn't want to end the fusion there. Feeling a little stressed.