When I met with my spine surgeon on November 4, she said she thought that since I did get total pain relief (for 2 days) after the epidural steroid injection into L5, it is likely that surgery at that level could give me total pain relief long-term. While it’s clear that my scoliosis has progressed significantly, she does not think correcting the scoliosis is necessary to give me pain relief. My L5 (fifth lumbar vertebra) is partially sacralized, meaning that the left half of that vertebra is fused to S1. The result is that instead of a normal box-shaped L5, I have a wedge-shaped L5. My understanding is that it is a congenital deformity (meaning I was born with it), and that is likely what caused my scoliosis. Imagine stacking box-shaped blocks on top of a wedge-shaped block. The shape would be curved rather than a straight tower. It seems like the lumbar curve developed first, and then the thoracic curve developed to compensate. Most people with scoliosis do not have the deformed L5 that I have.
When I asked the surgeon if it would be possible to correct my scoliosis without fusing me to the pelvis, she said no. She explained that, like the Eiffel Tower, we need a triangular base to support all the hardware that extends upward. I spoke with someone who had a fusion from T3-L2, and her L3 was crushed by the hardware above, resulting in her needing corrective surgery to reconstruct the L3 and fuse her to the pelvis. I expressed my concern about having the smaller fusion surgery and then having the bigger fusion surgery in the future, and asked if it would be better to do it all at once if I’m going to end up with a bigger fusion anyway. My surgeon said, “If you want to avoid having multiple surgeries, don’t have surgery at all.” She explained that revision surgeries are often necessary with longer fusions. She also said, “If I thought it was inevitable that you’d need the T2 to pelvis, I’d say do it now. But if you were my family member, I would say to do the L4-S1 surgery first and see how you do.” She also thinks since my hip pain was relieved by the epidural, that this surgery would relieve the hip pain as well. If I continue to have pain a year after that, I could get additional surgery (labral tear repair and/or fusion of T2-pelvis). But if there’s a chance that this one smaller surgery will totally alleviate my pain, even for a few years, that seems worth it. So I went ahead and scheduled surgery for December 15.
It will still be an anterior and posterior fusion (A-P lumbar fusion L4-S1), meaning the spine surgeon will have to go in from the front of my body and from the back. A vascular surgeon will first go in through my abdomen to get my organs out of the way, then the spine surgeon will remove the discs and put metal cages in the disc spaces. Then, they will flip me over and go in through the back to add rods and screws to fix the spine in the new position. The surgery should take about 6 hours, and I should be in the hospital for 2-3 days. Over the next 6 months, the bone should grow over the hardware, resulting in L4-S1 becoming one long fused bone. So the restrictions will be the same during recovery- no lifting, bending, or twisting for 3 months. But the pain should be way less than if I had the T2-pelvis fusion (the surgeon said T2-pelvis would be “this times 5”), and then once the fusion is completely healed, I’ll be able to twist and bend at all the other levels of my spine and pelvis. So by this time next year, I could be dancing again without pain.
As much as I wanted to avoid surgery, I feel like I have exhausted all other options. I have been doing physical therapy and dancing, and while physical therapy improves my pain somewhat, dancing regularly has been improving my mood, but also increasing my pain a lot. While fusing L4-S1 will keep me totally away from dance and work for the recovery period, it could let me get back to the life I want with less pain after I recover. Hopefully, I can keep up Schroth physical therapy to keep my thoracic curve from progressing. If, after I recover, I still have pain or the curves continue to progress, I may need to have the T2-pelvis fusion. The spine surgeon said having the deformity at L5 already corrected, fused, and healed would give me a “strong base” for that surgery to be as successful as possible.
I was hoping I would wake up feeling relieved to have made a decision, but I am still feeling a lot of fear and anxiety about the surgery and recovery, and a heavy sadness. Just a reminder from the universe that making the right decision doesn’t always feel good. Feeling scared doesn’t mean something bad is going to happen. Feeling anxiety doesn’t mean we need to turn back, and feeling sad doesn’t mean we are lacking something.
Over the next few weeks, I have to have additional tests and be cleared for surgery. I’m also getting a (6th) second opinion from a new surgeon tomorrow, just for good measure. I’m trying to see as many shows as I can before my surgery. To celebrate my 40th birthday, my brother and sister-in-law took me to a fancy French dinner and to see Masquerade, an immersive production of The Phantom of the Opera. It was très amusant! 👻
I will post again before I go in for surgery. As always, I thank you for your messages and I send you lots of love back!
Renée
Renée Gaubert, LCSW 
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