Doc recommends spinal fusion from T12 - S1.

@ardeecor That’s quite a compliment! You made me giggle! I didn’t go to medical school, but I was a premed biology major and later changed my mind. I worked in research at a university for a neuroanatomist for a few years. When I became a spine patient, the surgeons I consulted missed my correct diagnosis. I spent 2 years trying to get a surgeon to help me and I was looking up everything on my imaging reports online and watching a lot of videos of spine surgeons presenting cases at conferences so I learned a lot about what they were looking for and the differential diagnosis that could be something else. I was also looking for the next surgeon to consult and reading their papers. That lead me to my correct diagnosis that 5 surgeons missed because I looked up a term in that paper. From my education, I understood most of what I read in research papers and I looked up what I didn’t understand. I was also in physical therapy for my cervical issues and getting direct feedback and discussing it with my PT. I knew when surgeons were dismissing the clues in my symptoms because they didn’t understand why. I was dismissed by 5 surgeons. When I looked up that term, “funicular pain” I found other similar medical cases like mine described as “rare.”

Some of my understanding of medical issues is my science education, also art school and a 3 dimensional understanding of anatomy and caring for aging parents and advocating for their care. I have copies of my imaging and have been able to find the issues with spinal discs and bone spurs. When you scroll through an MRI you are looking at a series of slices of a 3 dimensional image.

It’s all of that and creative out of the box thinking always asking why something happens and its relationship to what I was doing and my body position at the time. I was tracking all of that on body diagrams and drawing my pain pattern. That was enough to scare a surgeon out of helping me because he thought I had an inflammatory problem causing the symptoms. The medical paper with the term was coauthored by a surgeon at Mayo. I knew he would understand that condition and with my request for an appointment, I included a copy of the case reports I found. At last, I found a surgeon who understood my case and I hired him. That’s why I share my story because it is so difficult to be a patient dismissed by medical specialists.

That might be more than you wanted to know. If I had gone into medicine, I probably would have been a surgeon. I forgot to mention the fellowship I received from the American Cancer Society when I was in high school. I studied along with resident doctors in the pathology labs at a hospital for a summer. That let me see actual diseases in organs which was very interesting and learn tissue processing with the electron microscope. That experience led to my lab assistant position later at the university.

@rwdixon4 This was not Dec 2, 2023 it was Sept 29 2025 ? ? ? I am now scheduled for Jan 7th at Mayo Phoenix.

I'm a 59 year old woman with scoliosis. I had my back fused from T4 to S1. My surgery was done over three days, an 8 hour surgery through the abdomen, a rest day, and a 10 hour surgery through the back. My surgery was May of 2022. I was also scared of not being able to be active again and it was hard to find anyone that had a long fusion to give me perspective.

My restrictions of no bending, lifting, or twisting were in place for one year. All I was allowed to do was walk. Within 2 months I was able to walk over 3 miles and after 5 months I was able to walk 6 miles, pain free. Prior to the surgery, my back would have started to hurt after about 2 miles. The only thing now that prevents me from long distance walks is time. I also went snowshoeing. That's walking, right?

After one year my restrictions were lifted. I'm now in the rehabilitation stage. This past summer, I was able to ride my bike again. The longest ride was 20 miles. Not as far as before, but it is improving. I didn't have back pain, but I was struggling a bit with shoulders aching and my seat not hitting me correctly. I'll be riding more next summer after I have some adjustments made to my bike. I'm not yet willing to get an e-bike.

I was also able to hike in the mountains (I use hiking poles to help with stability), I'm starting to jog (slowly for short distances), and I'm back at the gym. I also played a few rounds of golf this summer. I can't hit far because I can't twist, but I hit straighter. I've purchased a season pass for downhill skiing, but haven't tried yet...waiting for snow! I'm confident I'll be able to ski, but I know I'll need help getting my boots on and getting up if I fall....don't fall, right?!?

This is a long way of saying, anything is possible. I'm determined to do everything I did before, but it may look a little different. This has been the most difficult and frustrating thing I've ever experienced. Those around me keep telling me I'm doing great. Personally, I'm disappointed that I let the frustration take over at times and I didn't progress as fast as I thought I should.

I have no back pain. I have some discomfort and still feel a little like a spine patient and my shoulders get a little achy and tired.

If you move forward with the surgery, set realistic goals....walk a little more than the day before. I set a goal of walking a 5K under an hour at three months, riding my bike for at least a 20 mile ride, and hiking. I did it!

My goals for the next 5 months are downhill skiing, cross country skiing, jog a 5K, and do 50 pushups the day of my 2 year anniversary.

I wish you luck and encourage patience...something I lack.

Kelly

Hi
Yes, I am almost one year post surgery and doing very well! I walked 3 miles today and provided massage for two clients! What a year, but i have a new lease on life. Definitely still feel
like a recovering back patient but better every month. I am looking forward to bicycling and traveling this Spring. Prior… it was difficult to stand in line at Target or cook dinner.
Feel free to ask questions. I relied on two like spine patients as I went thru my procedure

@klsteffes Thank you for sharing your fusion story. My husband is already fused T9- S (don't remember the number) with wires attaching to his pelvis. This was a total redo from 4 prior surgeries plus higher. He now has T7-8 and T8-9 with issues and is considering fusion. He is concerned with restrictions - being able to move, drive, bend etc... He is as active as he can be but is in pain. He is now 79 years old. The surgery of 12 hours was done at the Mayo Clinic in Rochester and we think very highly of the surgeon. He has DDD, was in 5 helicopter crashes in VietNam. When he was 60 years old he was told he had the back of a 90 year old.