Dr. STL and the big surgical consult
Dammit, I promised myself I wouldn't cry.
Mom and I drove to Tulsa and flew to St. Louis. Completely uneventful. Up early the next morning, called the shuttle to the hospital so we wouldn't have to worry about parking and grabbed breakfast in the cafeteria. Let me tell you something. Barnes Jewish is the biggest hospital I've ever seen. No joke, the building I was in is 20 stories high and all of the buildings cover SEVEN CITY BLOCKS. This place was GINORMOUS. I got two new x-rays taken. Oh, I forgot to mention, I was in excruciating pain THE ENTIRE TRIP. So I couldn't stand up straight (especially without my shoes) during the x-rays. I didn't bother to tell the radiologists or Dr. STL, I don't really know why. I was amazed to see the x-ray up on the lightboard. My bones are so off center when I am in pain. It was a good thing I stood like that, though. None of my previous x-rays had shown that my L4 vertebra is a good 1-1.5 cm to the left of my L3 vertebra. It was really crazy and disturbing to see (and I apologize for forgetting to take pictures); it looked...dislocated. Anyway, that was minor compared to everything else. My suspicions were confirmed, I do have early flatback syndrome. Mom was impressed with how much of the medical terms I understood. What can I say, Simone's website is incredibly comprehensive, and reading up on everything really helped me prepare.
Dr. STL does seem to be very good at what he does, but I still have some reservations. Basically he wants to do the same thing Dr. OKC said would be best for me (plus a few other procedures). But Dr. OKC wasn't willing to do it because he said it would lessen my quality of life drastically. Dr. OKC mentioned several examples of that (hygiene, bathing, dressing); Dr. STL mentioned none of those things, and I was so overwhelmed I didn't even think about those things until that evening.
His surgical fellow had said I didn't need surgery at all, that I just needed to exercise. I told him that doing the laundry and dishes constitute exercise for me. Hell, I have to take a pill after I get the mail! Whatever. So I was happy when Dr. STL said he was willing to do surgery, and he thought he could really help me. I burst into tears when he said he wanted to do a total fusion. And I don't really know what happened next.
We scheduled the surgery for Monday, November 16th. Here's what he's going to do: hardware removal (the rod and hooks I have now), fusion reversal (breaking apart the fusion I have now), a new posterior spinal fusion from T4-sacrum/ilium with two rods and a lot of pedicle screws, Smith-Petersen osteotomies in the lumbar area ("the surgical removal of a wedge or piece of vertebral bone to alter the alignment of the spine"), Transforaminal Lumbar Interbody Fusion ("T-LIF") from L5-S1 ("a way to do an anterior fusion from a posterior approach"), and possible decompression between L3-4 and L4-5 (in case my nerves are getting pinched or compressed). My first surgery took less than 3 hours. This one is scheduled to take 10 hours, and it costs $250,000. The hospital time will be about the same, I think I was in the hospital 6 days last time; they said 5-7 this time. But then I will have to stay in St. Louis for 1-2 weeks for rehab; thank God we have so many friends and family there. The surgical techniques really have changed since '96. He won't be cutting into my hip, the bone that he is removing with the osteotomies will eliminate the need for that. He said he will try to level my hips and decrease my rib hump. I won't have to wear a cast or a brace, which kinda scares me. I'd actually prefer to have some extra exterior support until I get used to being a walking Barbie doll. And that's what it feels like to me. (The brochure his nurse coordinator gave me says, regarding post-op care, "Shower like a wooden doll.") The spine has 26 vertebrae (7 cervical, 12 thoracic, 5 lumbar, the sacrum and coccyx). Right now I'm fused from T10-L3 (5 bones). If I go through with this surgery, he will fuse 3 below (except the coccyx) and 6 above, 14 total. I will be completely fused to my pelvis. He says there is an 80-85% chance it will help with my pain. Those are good odds, I'm happy with that. He said none of his patients that fell within that percentage have regretted doing it. I still need to talk to someone who has gone through it about post-op realities of it. I won't be going back to St. Louis until the end of October for some tests (chest x-ray, bone density, EKG, MRI, pulmonary function test, blood work); that will be too late to ask my questions. I need to know NOW.
I asked him if there was any other way to help me without fusing me completely. Not really. This whole time I was hoping for pedicle screws because I thought they allowed for some flexibility even after surgery. He said they don't, and even if they did, he's putting (Jesus Christ) two more rods in my back, one on each side of my spine. And the artificial discs I've been reading about really aren't meant for people with spinal deformities (I HATE that word), mainly just people with degenerative discs only. He said if he put any in me, my back would break them. Lovely. He had mentioned earlier that he met Dr. Delaware a few years ago, and that he's a good guy. It was at this point in the conversation that I told him I regret having the first surgery and my pain increased tremendously after it. So I'm really hoping that if I go through with this, I fall into his 80-85%, because pain-wise, I was in the minority last time. So I'm scared about that. I'm scared about trading my flexibility and quality of life for pain relief and medical bills I won't be able to pay off for a decade. Seriously, if he's charging $250k for this, he better pay for laser hair removal for my legs, seeing as how I'll never be able to shave them again. "Generally tub baths are not permitted after surgery." Ever??? I need clarification on that. Right now, I don't have enough flexibility in my spine to shave my legs in the shower, I HAVE to sit in the tub, and it's still really painful.
I have so many questions now, I feel like such a fool. Why did I think this would make anything easier?
Mom and I drove to Tulsa and flew to St. Louis. Completely uneventful. Up early the next morning, called the shuttle to the hospital so we wouldn't have to worry about parking and grabbed breakfast in the cafeteria. Let me tell you something. Barnes Jewish is the biggest hospital I've ever seen. No joke, the building I was in is 20 stories high and all of the buildings cover SEVEN CITY BLOCKS. This place was GINORMOUS. I got two new x-rays taken. Oh, I forgot to mention, I was in excruciating pain THE ENTIRE TRIP. So I couldn't stand up straight (especially without my shoes) during the x-rays. I didn't bother to tell the radiologists or Dr. STL, I don't really know why. I was amazed to see the x-ray up on the lightboard. My bones are so off center when I am in pain. It was a good thing I stood like that, though. None of my previous x-rays had shown that my L4 vertebra is a good 1-1.5 cm to the left of my L3 vertebra. It was really crazy and disturbing to see (and I apologize for forgetting to take pictures); it looked...dislocated. Anyway, that was minor compared to everything else. My suspicions were confirmed, I do have early flatback syndrome. Mom was impressed with how much of the medical terms I understood. What can I say, Simone's website is incredibly comprehensive, and reading up on everything really helped me prepare.
Dr. STL does seem to be very good at what he does, but I still have some reservations. Basically he wants to do the same thing Dr. OKC said would be best for me (plus a few other procedures). But Dr. OKC wasn't willing to do it because he said it would lessen my quality of life drastically. Dr. OKC mentioned several examples of that (hygiene, bathing, dressing); Dr. STL mentioned none of those things, and I was so overwhelmed I didn't even think about those things until that evening.
His surgical fellow had said I didn't need surgery at all, that I just needed to exercise. I told him that doing the laundry and dishes constitute exercise for me. Hell, I have to take a pill after I get the mail! Whatever. So I was happy when Dr. STL said he was willing to do surgery, and he thought he could really help me. I burst into tears when he said he wanted to do a total fusion. And I don't really know what happened next.
We scheduled the surgery for Monday, November 16th. Here's what he's going to do: hardware removal (the rod and hooks I have now), fusion reversal (breaking apart the fusion I have now), a new posterior spinal fusion from T4-sacrum/ilium with two rods and a lot of pedicle screws, Smith-Petersen osteotomies in the lumbar area ("the surgical removal of a wedge or piece of vertebral bone to alter the alignment of the spine"), Transforaminal Lumbar Interbody Fusion ("T-LIF") from L5-S1 ("a way to do an anterior fusion from a posterior approach"), and possible decompression between L3-4 and L4-5 (in case my nerves are getting pinched or compressed). My first surgery took less than 3 hours. This one is scheduled to take 10 hours, and it costs $250,000. The hospital time will be about the same, I think I was in the hospital 6 days last time; they said 5-7 this time. But then I will have to stay in St. Louis for 1-2 weeks for rehab; thank God we have so many friends and family there. The surgical techniques really have changed since '96. He won't be cutting into my hip, the bone that he is removing with the osteotomies will eliminate the need for that. He said he will try to level my hips and decrease my rib hump. I won't have to wear a cast or a brace, which kinda scares me. I'd actually prefer to have some extra exterior support until I get used to being a walking Barbie doll. And that's what it feels like to me. (The brochure his nurse coordinator gave me says, regarding post-op care, "Shower like a wooden doll.") The spine has 26 vertebrae (7 cervical, 12 thoracic, 5 lumbar, the sacrum and coccyx). Right now I'm fused from T10-L3 (5 bones). If I go through with this surgery, he will fuse 3 below (except the coccyx) and 6 above, 14 total. I will be completely fused to my pelvis. He says there is an 80-85% chance it will help with my pain. Those are good odds, I'm happy with that. He said none of his patients that fell within that percentage have regretted doing it. I still need to talk to someone who has gone through it about post-op realities of it. I won't be going back to St. Louis until the end of October for some tests (chest x-ray, bone density, EKG, MRI, pulmonary function test, blood work); that will be too late to ask my questions. I need to know NOW.
I asked him if there was any other way to help me without fusing me completely. Not really. This whole time I was hoping for pedicle screws because I thought they allowed for some flexibility even after surgery. He said they don't, and even if they did, he's putting (Jesus Christ) two more rods in my back, one on each side of my spine. And the artificial discs I've been reading about really aren't meant for people with spinal deformities (I HATE that word), mainly just people with degenerative discs only. He said if he put any in me, my back would break them. Lovely. He had mentioned earlier that he met Dr. Delaware a few years ago, and that he's a good guy. It was at this point in the conversation that I told him I regret having the first surgery and my pain increased tremendously after it. So I'm really hoping that if I go through with this, I fall into his 80-85%, because pain-wise, I was in the minority last time. So I'm scared about that. I'm scared about trading my flexibility and quality of life for pain relief and medical bills I won't be able to pay off for a decade. Seriously, if he's charging $250k for this, he better pay for laser hair removal for my legs, seeing as how I'll never be able to shave them again. "Generally tub baths are not permitted after surgery." Ever??? I need clarification on that. Right now, I don't have enough flexibility in my spine to shave my legs in the shower, I HAVE to sit in the tub, and it's still really painful.
I have so many questions now, I feel like such a fool. Why did I think this would make anything easier?
