Harrington Rod and lower back pain

I too had Harrington rods inserted in my back, when I was 10 years old, back in 1980. My entire spine is fused, except for L4 and L5. I didn’t have any pain until I became pregnant. Now I live with pain 24/7.
I still have 2- 90+ degree curves, between my shoulder blades , it’s concave.
I had some nerve blocking done in my neck years ago and it helped tremendously.
My pain just keeps getting worse. I’m only able to stand at the kitchen sink for about 3 minutes before my low back hurts so much I have to sit down.

Hello, I hope you are feeling better now. Unfortunately, I, like many others, am a scoliosis patient having problems with my lumbar discs and vertebrae below my T2-L2 Spinal Fusion w/ Harrington Rod. (degeneration, stenosis, spondylisthesis, lateral listhesis,2 bulging discs, etc.) I am looking for a surgeon that has considerable experience in patients like me. I live in California, but I know how important it is to find a top surgeon. It would be greatly appreciated if you would share the name of your Mayo Clinic surgeon. (If anyone else was happy with your surgeon, info would be greatly appreciated, too,)
Thank you!

@nlback22 Hello! I want to welcome you to Connect. I can provide some information about my Mayo neurosurgeon, Jeremy Fogelson. He is a spine deformity expert and does some extensive cases with deformity and scoliosis corrections. My surgery wasn't for that, but I had unusual symptoms for spinal cord compression that other surgeons misunderstood, so that is how I came to Mayo in Rochester.

Dr. Fogelson was trained at Mayo in neurosurgery, and also did an orthopedic spine fellowship at another medical center, and came back to Mayo to work and teach in the neurosurgery program. He is an excellent surgeon and is very kind. That is why I help here on Connect, because his surgery changed my life. I talk about him a lot, and he is in demand, but is worth waiting for and he loves his job. There is a lot of information here about his complex cases.

Here are some links and his profile. If you wish to request an appointment with him, you may use this link to get started: http://mayocl.in/1mtmR63

Profile
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is a video about scoliosis
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/adult-scoliosis-diagnosis-and-treatment-options/vid-20527937
https://www.mayoclinic.org/medical-professionals/news/point-of-care-additive-manufacturing-provides-complex-scoliosis-models/mac-20509966
https://www.mayoclinic.org/medical-professionals/orthopedic-surgery/news/vertebral-column-resection-multidisciplinary-approach-to-complex-spinal-deformity/mac-20507694
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/specialized-expertise-for-spinal-deformity-surgery/mac-20469055
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/combined-neurosurgical-and-orthopedic-training-facilitates-complex-spinal-surgery/mac-20528545
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/spondylolisthesis-individualized-approach-for-optimal-outcomes/mac-20509911
Patient stories
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-spinal-surgery-saves-teen-swimmers-mobility/
My patient story
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Thank you so much for responding and sending the helpful and informative links. Dr. Fogelson's area of expertise, and that of the Mayo Clinic sound amazing.

Hi Jennifer,
This is Nadine again. Realizing the importance of choosing a physician that is part of a high-volume center for spinal deformity care, such as Mayo Clinic, that may be what I do.
But as you are so knowledgeable, I wanted to see if you know of a high-volume center for spinal deformity care on the West Coast as I live in California.
Thank you!

Nadine,
I don't have specific information about high volume spine surgery centers, but in checking with US News and World Report, there are some highly ranked centers specifically for neurology and neurosurgery. For California medical centers national rankings, #2 is UC San Francisco Health, #7 is Cedars Sanai, #12 is UCLA, #21 UC San Diego, and #36 UC Davis. When there is a medical school connected to the facility, there are likely good surgeons there teaching and who present cases and teach at spine conferences.

If you go to the websites for those medical centers, you can start looking up surgeons and their background and areas of interest. You have to research everything you can about them to figure out if they are a good match and look for literature they authored or any videos about them. I understand not wanting to travel, and initially, I thought that was too, but I spent 2 years and struck out with all the surgeons I saw in the closest major Midwest city. I considered both Mayo and Cleveland Clinic, and tried Mayo first and chose to have spine surgery there. Mayo was a 5 hour drive through some pretty countryside for me to get there, and it was well worth it. I returned to Mayo again for surgery after an ankle fracture. When you have a face to face consult with a surgeon, you'll get a much better idea if you feel they are right for your case.

You need a good spine deformity expert no matter where you go, so find the best surgeon you can, and if they happen to be close to home, great, but if not, it is worth traveling to get world class care because you don't want a surgery that isn't successful and doesn't solve the problem you have which now needs revision. I would recommend getting several opinions because it's important. You will likely wait a long time to see a good surgeon, maybe 3 months or more, so you can request appointments with a few now. If you wait to see one, then start with another, it could draw out this process for a year.

Good luck in your quest!

Jennifer

Hi Jennifer, Thank you for the insight.😊

@nlback22 I didn't think of this before, but if Phoenix isn't too far from you, there is a Mayo Clinic campus there, and also Barrow Neurological Institute. You may find spine deformity specialists there too.

I will check out Mayo Phoenix more closely. During a cursory look, awhile back, it seemed like some of the surgeons in Mayo Minnesota have more experience in issues like mine.
Fortunately, next year I will be going on Medicare plus a supplement which will allow me a lot of flexibility.😊

I am 7 weeks out of l5s1 interbody fusion first week was good each week I get worse I can feel some thing on a nerve surgeon says all still as he placed it he turned me over to another Dr a retired surgeon I have appointment Jan tried to call to see what I. Need to do would not return call I am ready to get out of this pain my dad committed suicide and now I know why he did