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Complex Congenital Scoliosis with Flatback - Revision Surgery
I am 53 years old. I was born with congenital scoliosis. After 3 spinal fusions, I was left with 64 degree and 46 degree curves and flat-back syndrome. After I had my twin daughters, I was diagnosed with a split spinal cord that was tethered to my sacrum. In my mid-thirties, I had my spinal cord untethered. I had a cardiac stent 5 years ago, and just recently was diagnosed with Pulmonary Hypertension due to my severe scoliosis. The doctor has ordered oxygen for me and a bi-pap machine, but I am miserable. I can't catch my breath, I have numbness in my left foot and leg. I have also been diagnosed with kyphoscoliosis, syringomyelia, and syringobulbia. I'm looking for a doctor who is capable of doing a successful revision surgery to straighten my back and get rid of my flat back and hopefully prevent the pulmonary hypertension and numbness from progressing. Since Mayo Clinic is #1 in Neurosurgery, #1 in Pulmonology, and #2 in Cardiology, it seems Mayo Clinic would be the best place for me to find the right doctor(s). How do I determine who to see there and can they bring specialists in the other areas together to make sure all my conditions are considered and helped. Can anyone recommend the best doctor at Mayo for someone with my conditions.
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Hello Ziva, and welcome to Connect. It sounds like you have had quite the journey with your scoliosis, thank you for sharing your story with the Connect community.
I have moved your discussion to the Bones, Joints & Muscles group. I would like you to meet @detzler, @sauwoon8 @mieke @ruben130476 @safetyshield, and @annieecruz who all have discussed scoliosis and may be able to offer insight on revision surgery and their experiences with physician's who were knowledgable about scoliosis. I would also like to invite back @coladyrev, @ladidy, and @maclyn to share their experience with scoliosis.
You may find this article interesting as well, https://connect.mayoclinic.org/discussion/seamstress-moving-and-sewing-again-after-complex-spine-surgery-for-scoliosis/.
If you are interested in scheduling an appointment at Mayo Clinic you can find appointment information here http://mayocl.in/1mtmR63.
Ziva, what has your current physician recommended regarding a revision surgery and your other complications from scoliosis?
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1 ReactionI am scheduled for MRI on Monday and on October 31st I see the neurosurgeon to find out their recommendation. I have been told that a revision surgery would take 2 days, then 3 days in ICU, followed by another week in the hospital and 3 months of rehabilitation. I am determined to get a second opinion, and based on research, Mayo Clinic sounds like the best place for it in light of their rankings in the areas where I have the most problems (Neurosurgery, Pulmonology, and Cardiology). I am willing to travel anywhere in the U.S. for the best care. Which Mayo Clinic facility in which city would be the best location to pursue a second opinion/consult based on my issues?
Ziva, if you call the appointments office at Mayo Clinic they will discuss with you which expert and which facility would best meet both your medical and travel preferences http://mayocl.in/1mtmR63.
@annieecruz writes of her experience with surgery at Mayo Clinic Rochester MN here http://mayocl.in/2eIkQkh
I was just reading this post. I am just asking to see how to are doing now after all this?
My mother is going to have this surgery in September 2018 I hope all is well!!