I met with Dr. Lenke last week; he said he can help me and I am scheduled for surgery Aug 1, 2012. I'm on the cancellation list and feel good that the surgery date will be bumped up. I was able to meet with two ladies from the Scoliosis Foundation forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups. Talking with them really helped pass the time and it was very comforting. Nancy, who is in her late 50's, had similar surgery and is fused to her sacrum. It was good for me to see her because a lot of folks think there are major flexibility limitations when fused to the sacrum, but you'd never know Nancy had surgery at all just looking at her. Total time in Lenke's office was 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.
Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients, he specializes in severe cases only) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon. Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my surgery date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.
Lenke gave me a choice of surgeries: Option #1 fuse T4 - L4 (bottom of neck to bottom of lumbar area of spine) and have to come back for additional surgery to replace L5 within 2, 5 or 10 years (the L5 disc always wears out quickly in a full fusion from bearing the full weight of the spine). Option #2 fuse T4 - sacrum (bottom of neck down entire spine and anchored into my sacrum) and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum. This link shows which vertebrae will be fused http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php
What does it mean to be fused to the sacrum? I will be able to sit; however I will have limitation with not being able to bend over. Squatting will be necessary to, let's say, pick up something from the floor. Will I walk like the Tin Man? No. I could care less about some limitations because all of Lenke's patients I've talked with who are fused to the sacrum have said all their pain is gone, that they occasionally experience muscle tightness. I'm still conservative with my pain goals. Do I expect to be pain free? No, but I am praying that some pain will be alleviated and anything beyond that is gravy.
Dr. Lenke will do the following procedures in one surgery:
1. T4 - sacrum fusion: Implanting two titanium rods and multiple screws along both sides of spine. Here is a little video showing how a fusion is done (animated, no gorey stuff) http://www.youtube.com/watch?v=OfWQr_2yF9g&feature=player_embedded
2. TLIF (Transforaminal Lumbar Interbody Fusion): an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended. Dr. Lenke pioneered this approach and teaches surgeons how to do this procedure. This is where he will anchor the bottom of the fusion into the sacrum.
3. Perform about 5 to 8 Smith-Peterson osteotomies: there are 3 levels of osteotomies and I need the "easiest" level I. Osteotomies are removal of bone from the vertebrae which cause a lot of blood loss; however, this creates new bone growth for a stronger fusion.
4. Implant 2 cages at L5 with BMP: Cages are little metal devices that provide a stable platform for the weak L5 disk. One cage will be placed above and one below L5. BMP (bone morphogentic protein to build a stronger fusion) is a material that gives a 23% stronger, faster fusion and Dr. Lenke won't do any surgery without (think of it as super glue). BMP comes in a kit and each kit costs between $10k - $12k. Lenke said I will need 6 kits. Most insurance companies deny BMP because of the cost. Washington University Barnes Jewish Hospital has been absorbing the cost for patients; this is where I'll have surgery. The hospital and Dr. Lenke feel that the benefits of BMP keep patients from having future fusion issues and result in faster recovery.
These surgeries are incredibly expensive and average around $250k. I'm looking forward to taking advantage of our health insurance policy. :) Dr. Lenke only does 30 adult scoliosis surgeries per year. He also leads the pediatric spinal department at Shriners Children Hospital in St. Louis. He is definitely a busy man which is why I have peace knowing the best-of-the-best will be doing my surgery.
Lenke estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of difficulty 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.
Lenke expects to get a 70% - 75% correction! I simply cannot fathom that and will be over the moon when it happens. It's hard for me to comprehend any correction since I've been crooked for so long. Lenke said 80% of his patients have significant pain reduction post-op, 12% maintain current pain levels and 8% actually have worse pain. I'll spend about a week in the hospital and Lenke suggested I stay in the adjoining hotel for a few days before heading home. I will be up and walking the day after surgery - amazing! Full recovery will take 1 - 2 years.
I'm well aware there are risks with any procedure. I explained to Lenke my goals are to stop the progression and hopefully alleviate some of my pain. Here is Lenke's website, the Patient Stories tab has some amazing journeys http://www.spinal-deformity-surgeon.com/
I am VERY relieved that I have a plan in place with Lenke. God is good. Thank you so very much for praying not only for me, Jeremy and Lizzie, but for Dr. Lenke and his team. God is creating miracles through Lenke's hands.
Warmly,
Doreen
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