Am I destined for surgery? Anyone manage this without?

@melissa711 I know how I felt when I wondered, but when I saw the images of bone spurs pressing on my spinal cord, I knew there was only one way to fix that and it would be spine surgery. I still held out hope until a spine surgeon told me I had significant spinal cord compression and it hit me like a ton of bricks. He was very pushy and it scared me into having panic attacks. He also missed the proper diagnosis because he told me to fix the problem causing pain in my legs first, then come back for his surgery, and directed me to a rehab center. His mistake was not knowing that the spinal cord compression in my neck was causing my leg pain. I went to the rehab center for the appointment they scheduled, but they hadn’t heard of me. I never went back and found other surgeons. All of them made the same mistake until I found medical cases like mine online and found a surgeon at Mayo who understood this.

I found myself caught between my fear and having to advocate for myself in front of surgeons who missed the correct answer time and time again. My 6th consultation and the only correct answer was at Mayo. I had a fusion of C5/C6 done without hardware there and it was not as bad as I had imagined it to be. The surgeons who wouldn’t help me actually in a way did help because I feared them and was facing that with every appointment as I learned to overcome it. This surgery and overcoming the fear changed my life for the better in so many ways.

I know I’m not directly answering your question, but remember it is your choice to go forward with spine surgery. It isn’t the same for everyone and you have to balance the compromises of surgery against what function would be lost without it. There are significant findings on your report that would likely get an offer of surgical intervention from a specialist. You know what you are living with now. Nerves have limits on how much compression can be tolerated before they die and dissolve. The spinal cord can be permanently damaged and the function lost for wherever those nerves were headed. Pain isn’t always an indicator of a problem. Some patients are surprised to learn of spine problems because they didn’t have pain.

For whatever you feel as you go through all of this, we’ll be here to share your journey.

@melissa711 I know how I felt when I wondered, but when I saw the images of bone spurs pressing on my spinal cord, I knew there was only one way to fix that and it would be spine surgery. I still held out hope until a spine surgeon told me I had significant spinal cord compression and it hit me like a ton of bricks. He was very pushy and it scared me into having panic attacks. He also missed the proper diagnosis because he told me to fix the problem causing pain in my legs first, then come back for his surgery, and directed me to a rehab center. His mistake was not knowing that the spinal cord compression in my neck was causing my leg pain. I went to the rehab center for the appointment they scheduled, but they hadn’t heard of me. I never went back and found other surgeons. All of them made the same mistake until I found medical cases like mine online and found a surgeon at Mayo who understood this.

I found myself caught between my fear and having to advocate for myself in front of surgeons who missed the correct answer time and time again. My 6th consultation and the only correct answer was at Mayo. I had a fusion of C5/C6 done without hardware there and it was not as bad as I had imagined it to be. The surgeons who wouldn’t help me actually in a way did help because I feared them and was facing that with every appointment as I learned to overcome it. This surgery and overcoming the fear changed my life for the better in so many ways.

I know I’m not directly answering your question, but remember it is your choice to go forward with spine surgery. It isn’t the same for everyone and you have to balance the compromises of surgery against what function would be lost without it. There are significant findings on your report that would likely get an offer of surgical intervention from a specialist. You know what you are living with now. Nerves have limits on how much compression can be tolerated before they die and dissolve. The spinal cord can be permanently damaged and the function lost for wherever those nerves were headed. Pain isn’t always an indicator of a problem. Some patients are surprised to learn of spine problems because they didn’t have pain.

For whatever you feel as you go through all of this, we’ll be here to share your journey.

I would suggest an experienced neurologist and a physical Therapist who understands nerve issues.

Also maybe acupuncture to help cope with the flair of pain.

I have stenosis with claudification into legs. PT while slow is my answer as surgery I am a very slow healer.

@dsonderhouse Does this mean you chose not to have surgery?

@melissa711

Mine is situation is tricky. it is moderate stenosis with a ligament hytrophy at l4 l5 and claudia equina impact and dengerative changes throughout spine. On top of that I have severe forminal left stenosis at c5 c6 and bony growth ( bone spurs c2- c6) and inconvertable slippage c2 c3 and other milder stenosis at each level. Add on that I have disc degeneration throughout the spine and other instability along with inability to heal well from surgery. So, I am doing all I can to strengthen and reduce pain until there is no other option. I have done 2 ablation, multiple rounds of steroid shots and these only made things harder for my spine. I do not know what the future holds but trying this route for now. Best to listen to a neurological surgeon on your specific case.

@dsonderhouse wow that is a lot! Thank you so much for your detailed reply. I am trying to get as many perspectives as possible. I’m leery of going on just the recommendation of a surgeon as it seems it has turned into such a big business.

@jenniferhunter
This is very helpful jennifer. What kind of pain did you have in your legs and which surgeon at Mayo helped you in the end ? You are familiar with me. I had a laminotomy 3/1/24 for symptoms in my legs from lumbar stenosis, which helped for only four months. Since then I have spoken to many surgeons and they all say I need lumbar fusion, several levels.
Finally however, one surgeon looked at my cervical spine and now I have to get another MRI of that and wondering if that might be part of the cause of my leg symptoms, which are throbbing and twitching after walking only 5 minutes.
Thanks everyone on this website !

@jenniferhunter thank you so much for your lengthy reply.

I would like to hear more about your leg pain being tied in to your c5/6 as I too have something going on in my groin and sometimes all the way down to my foot. I’m afraid of thoracic or lumbar involvement.