Longterm follow-up to 1978 Harrington Rod surgery

Posted by deden @deden, Sep 12, 2023

I had Harrington Rod surgery at Johns Hopkins in 1978 for a curve that had crept up to over 100 degrees after years in a Risser cast as an adolescent. I had a long curve that was corrected to 45 degrees. I have 14 fused vertebrae, but had three 10-pound babies, played tennis until a few years ago and continue to be relatively pain free.
My biggest complaint is compromised lung capacity (currently about 60% of normal) and I now seem be experiencing some auto fusing at the apex of the curve that is further limiting my flexibility. I want to do anything I can to avoid losing lung additional capacity. I am looking for a doctor that is familiar with post-Harrington Rod follow up. The one doctor I saw at Duke a few years ago basically had no advice. Do you have any recommendations? I live in the Raleigh, NC area.

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deedee12 | @deedee12 | Sep 13, 2023

I do not know a doctor in NC but there are some really great doctors that work with what is known as flat back. I have Scoliosis had surgery in 1977 with Harrington rod. I continued with lumbar issues and fused T2-S1 as of 1989. I went for many years without really any issues until 2018 and cervical issues. My recommendation is a neurosurgeon or orthopedic spine surgeon with experience with revisions, flat back and complex cases. A lot if them work through University hospitals and are professors/trainers with fellowships. My doctor was not as experienced here in Dallas. While he did not do a bead job with my revision osteotomy to correct my sagittal balance in 2021, I believe he had some misses. My original surgery was in St Louis. I am at Mayo Clinic in MN now with a group of doctor's. I hope this info helps. FB also has a great group for flatback folks like us.

Jennifer, Volunteer Mentor | @jenniferhunter | Sep 18, 2023

@deden Welcome to Connect. I think my neurosurgeon, Jeremy Fogelson, at Mayo in Rochester, MN would be a good fit for what you need. He is a spine deformity specialist and does complex surgeries to better correct spine alignment. You couldn't find a nicer more compassionate surgeon and he is excellent and loves his job. He did my cervical fusion a few years ago at Mayo. He also teaches in the neurosurgery program at Mayo and mentors other surgeons.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is Dr. Fogelson talking about scoliosis treatment.
https://medprofvideos.mayoclinic.org/videos/adult-scoliosis-treatment-options-at-mayo-clinic
If you do want to request a consult with Dr. Fogelson, you can use this link to contact Mayo Clinic. They can arrange for you to send in imaging and you may request that it be sent to him for review. There is no charge to have a doctor look at your case in requesting an appointment.
http://mayocl.in/1mtmR63
I don't have scoliosis, and I will help answer questions from my experience about spine surgery at Mayo.

deden | @deden | Sep 21, 2023

In reply to @jenniferhunter "@deden Welcome to Connect. I think my neurosurgeon, Jeremy Fogelson, at Mayo in Rochester, MN would..." + (show)

Thank you for this information. I am trying to track down x-rays I had taken at Duke about 10 years ago and then will decide on follow-up options to see if there have been any significant changes since then. I do an annual lung capacity test with my pulmonologist to be sure my lung capacity is not decreasing.