Scoliosis

Good Morning,

I am turning 67 tomorrow and will be having spinal surgery and Bilateral S.I. Joint fusion on May 13th and May 14th.

I was first diagnosed with slight Scoliosis when I was 9, and began physical therapy. In addition to PT, from approx.13 to 16 years old, I wore a Milwaukee Back Brace for 3 years. The Orthopedic doctor released me from his care and I thought everything would be fine for the rest of my life.

At the age of 19, my older sister was working in a physical therapy office at a local hospital and observed many Scoliosis patients that were in severe pain. Although I had no pain and was loving life, at the suggestion of the head of the PT department, I saw Dr. John King, the top Scoliosis surgeon in So. California at that time.

In looking back at my prior x-rays, Dr. King observed that my Scoliosis continued to worsen over the years without being detected by the prior Orthopedic doctor.
At the age of 19, my thoracic curve was 74 and my lumbar curve was 46. Dr. King, stated that if I did not have a spinal fusion, by the time I was 24, I would be confined to a wheelchair due to pulmonary and cardiac problems resulting from the anticipated progression of my Scoliosis.
I decided, along with my family, to proceed with the surgery.

At such a young age, they were able to place me in traction to straighten out my back as much as possible, before surgery. (12 days) The upper curve was reduced to 47 and I don't recall the number for the lower curve. I was fused from T2 to L2, and a Harrington Rod was implanted. The fusion was a success and still is. I have not had any problems in that section of my spine.

Unfortunately, as the years passed the vertebrae below the fusion have taken a lot of wear and tear I have a multitude of issues under the heading "Adult Spinal Degenerative Disease". (Bulging Disc, Stenosis, DDD, arthrosis, spondylolisthesis, lateral listhesis, many perineural cysts, Bertolotti's, etc.)
Up until 2022, I was able to manage my back pain with physical therapy exercises. What use to help, doesn't help now. In addition to back pain, I also began to have sporadic nerve pain, which is now constant.

I am having my surgeries at Mayo Clinic, Rochester. On day one, Dr. Cross will be doing a Bi-lateral Sacroilliac Fusion, and, on Day two, Dr. Fogelson will be doing a Lumbosacral Spinal Fusion.

Post Surgery, once I am able to, I'll try to let everyone know how I am progressing.

My word of advice to you "paltavilla1," is to seek out the best Scoliosis specialists in your area and get a second opinion. Always ask how many cases like yours the doctor has treated? What is their success rate? What is the risk of paralysis? Other Risks and their rate of occurrence? What should you expect? What are your options? What does success look like for you? (Teaching universities are a good place to start. The Scoliosis Research Society has a listing of doctors that concentrate at least 20% of their practice on patients with spinal deformities.) Although I live in California, given the complexity of my case, I chose to go to Mayo Clinic and to two doctors that have seen many patients like me.

My T2 to L2 surgery did not restrict me from the things that I love to do--hike, bike, and swim. In contrast, after my next surgery, as I do not want to risk the consequence of falling, I will not be biking and hiking. Fortunately, I live near the beach, and will be able to do plenty of beach walks.

Best Wishes to you and all of whom are experiencing Orthopedic challenges.
Nadine

Surgery is one option. My wife (69 years old) attended the Scoliosis Chiropractic Center in Celebration Florida in January. On arriving her scoliosis curve was mid 30%. After 2 weeks treatment including getting fitted for a brace, her scoliosis curve decreased to 23% and her pain symptoms decreased measurably. After wearing the brace for over 2 months and following the exercise regime daily, she looks great, has excellent musculetal bone and spine structure with bulging shoulder, back and hips muscles. Her movement and agility is at least 45% improved - a completely different person. In another month she will be measured again and my money is on the curve being decreased to 15% to 18%. For us, this alternative makes great sense as opposed to being laid up for over a year and stiff for the rest of her life after the insertion of a metal rod in her back with the old fashioned spine surgery.

@nlback22
Nadine, you have quite a story. I am so glad you are having surgery at Mayo, and yea for Dr. Fogelson! How did you find him? I have to tell you, I think he is the best and my opinion is biased because he did my cervical fusion. He does a lot of spine deformity cases, and he is a kind surgeon with a lot of compassion. I also traveled to get to Rochester and it was worth it.
Do you have your hotel reservations worked out? Did you find him from the Scoliosis Research Society?

Sharing your story here helps a lot of patients. I found Dr. Fogelson by looking at surgeons at Mayo and reading their research papers. In doing that, I found a path to medical literature that explained why my case had been misunderstood by several local surgeons. I had spinal cord compression that was causing loss of coordination in my arms among other problems and pain all over my body. Dr. Fogelson gave that all back to me. He is a gifted surgeon. I am happy for you.

Jennifer

@nlback22
Nadine, you have quite a story. I am so glad you are having surgery at Mayo, and yea for Dr. Fogelson! How did you find him? I have to tell you, I think he is the best and my opinion is biased because he did my cervical fusion. He does a lot of spine deformity cases, and he is a kind surgeon with a lot of compassion. I also traveled to get to Rochester and it was worth it.
Do you have your hotel reservations worked out? Did you find him from the Scoliosis Research Society?

Sharing your story here helps a lot of patients. I found Dr. Fogelson by looking at surgeons at Mayo and reading their research papers. In doing that, I found a path to medical literature that explained why my case had been misunderstood by several local surgeons. I had spinal cord compression that was causing loss of coordination in my arms among other problems and pain all over my body. Dr. Fogelson gave that all back to me. He is a gifted surgeon. I am happy for you.

Jennifer

Surgery is one option. My wife (69 years old) attended the Scoliosis Chiropractic Center in Celebration Florida in January. On arriving her scoliosis curve was mid 30%. After 2 weeks treatment including getting fitted for a brace, her scoliosis curve decreased to 23% and her pain symptoms decreased measurably. After wearing the brace for over 2 months and following the exercise regime daily, she looks great, has excellent musculetal bone and spine structure with bulging shoulder, back and hips muscles. Her movement and agility is at least 45% improved - a completely different person. In another month she will be measured again and my money is on the curve being decreased to 15% to 18%. For us, this alternative makes great sense as opposed to being laid up for over a year and stiff for the rest of her life after the insertion of a metal rod in her back with the old fashioned spine surgery.

Good Morning, Jennifer,

I have been meaning to contact you.
I first heard about Dr.Fogelson, in Fall 2023, from you and want to thank you for the recommendation.
He is amazing!

After consultations at Cedars Sinai, and the University of Calif. Irvine, I had a consult with Dr. Fogelson in April 2024.

During my various consultations, it was recommended that I go on generic Forteo to build up my bone density prior to surgeries--Spinal Fusion and Bilateral Sacroilliac Fusions. ( age 67 ) My endocrinologist recommended that I go on Forteo for 1 to 2 years prior to the surgeries.
Managing my back and radicular pain has been a challenge, but the delay has allowed my bone density to get stronger and should improve my surgery outcomes.

I am definitely ready to proceed!

Jennifer, thanks again!

Nadine

@nlback22 Thank you so much Nadine! I am excited for you to begin your healing journey to better functioning. I think your patience with bone building will pay off. My functional medicine doctor has me on bioidentical hormone replacement and hopefully that will prevent osteoporosis. My mom has this and has had fractures because of it, and with spine support and spine surgery requiring hardware, it makes a difference.

I also want to say happy birthday! You are very close to my age. Having had scoliosis as a child must have had a huge effect on your life. I do hope this revision will be a big improvement and I will be looking forward to your updates. You may want to connect with @sherrym25 , a scoliosis patient who had recent surgical treatment at Mayo in Phoenix. You can find her in this discussion:
Spine Health - "My journey with a T11 to L4 spinal fusion - 40 degree scoliosis curve"
https://connect.mayoclinic.org/discussion/l4-to-t11-spinal-fusion-for-scoliosis/
It really touches me that meeting me on Connect helped you find what you really needed. That means a lot. Thank you. So many members move on without making a commitment to advocate for themselves or when they no longer need support. I wish you the best!

Jennifer