MRI results and Pain symptoms not matching. Dr says nothing he can do.

Posted by sbraden1234 @sbraden1234, Nov 9, 2024

I had decompression and fusion at L3-L4-L5 one year ago. Throughout this year I have had lower back pain, leg pain, a drop foot, numb toes, heels and lower leg. Walking and bending are so painful. I wake throughout the night from pain and lately both my legs also ache so bad, it is impossible to get back to sleep.
The MRI and CT scan for my year post op appt says I have a broad based disc bulge and significant foraminal stenosis at L5-S1 compressing the exiting nerve roots and a disc bulge at L2-L3 with canal and foraminal stenosis and compression of the exiting nerve root.
My neurosurgeon said where I report pain does not match the MRI or CT scan and he can't do anything further for me. I feel like I am going absolutely crazy, being in this much pain every single day and night and being told this is it. I have had injections in the joints that have not helped. The surgeon said this is indicative that surgery would not help. I did 6 months of PT and now work out with a trainer and exercise 6 days a week. Does anyone have any advice? Do I just stop thinking there is a way to become pain-free and suck it up so to speak?

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@slkanowitz

Sbraden, please also get evaluated by a neurologist ( a dr who diagnoses medical neurological problems that aren’t treated surgically), as you could have both the spine issues and a peripheral neuropathy, which needs sorted out. An EMG test can help with that. Mayo will likely get neurologist involved as part of your workup. PN is very common and causes numbness, tingling, foot drop, aching leg pain, weakness in muscles, gait disturbances. There’s a lot of overlap between PN and the symptoms from bulging discs and compression of spinal nerve roots. They are treated differently once the situation is clarified. Good luck! You have been dismissed and a second opinion away from any connection to your current Dr is a must!

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Thanks, I am working on finding doctors who are not associated with the health system I am in. Luckily, I have insurance that lets me choose who I see. I had not thought of seeing a neurologist. I have an appt with my PCP this morning and I will ask for a referral. I have found out that some specialist regardless of insurance will only see you if it is a referral from another doctor.

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I have gone to various doctors and neurology is the only one that has been helpful even though he doesn't really do anything (since I can't tolerate meds). I feel I have a partner in assessing when surgery will be needed. PT has been good too (massage).

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Hey Sbraden Did U have the drop foot, numb toes. Prior to Your decompression and Fusion? Also Feel like your going crazy. Is about how Ya describe it am there doing that. Do U take anything for the pain.

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@smn1

Hey Sbraden Did U have the drop foot, numb toes. Prior to Your decompression and Fusion? Also Feel like your going crazy. Is about how Ya describe it am there doing that. Do U take anything for the pain.

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I did not have a drop foot or numbness in legs, toes or feet prior to surgery. I was in a lot of pain and the surgery fixed some of it but not all. I did not feel like I was going crazy prior to surgery - it took me three years to finally get an accurate diagnosis. It was my back that was jacked up not my hips and glutes. A lot of wasted time. I feel like I am going a little nuts now because the way my back hurts is so sharp and consistently painful and it hurts to walk - I just can’t believe that my back does not have something very wrong that could be fixed. I have a prescription for Percocet but I only take it when I can’t sleep at night due to the pain. When I am not sleeping I suffer the pain so I can go out and about and try to live in the real world.

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@jenniferhunter

@sbraden1234 I think your pain does follow and match up where you have spine issues. This is a dermatome map. It shows you where nerves end up that leave the spinal cord at each level. If you circle or shade in where your pain is, it should match the imaging descriptions for where your issues are. These spinal nerves exit at the nerve roots which are a predictable result. The way you describe your symptoms, it does follow the dermatome map.
https://www.ncbi.nlm.nih.gov/books/NBK535401/figure/article-29335.image.f1/
When you have a disc bulge into the central spinal canal, it can compress the spinal cord, and can affect any nerves below that level. This is very hard to predict exactly where pain will be felt because the spinal cord floats and moves in the spinal fluid, and it all depends on how you move or bend, and pain can change locations. If by chance, you have any bad discs compressing the spinal cord in either cervical or thoracic levels, that will confuse the diagnosis because those can generate pain that is hard to predict. This will not correlate to the dermatome map.

When your neck hurts, this may be confusing your surgeon because that wouldn't be involved in any lumbar pathology. If you do have some neck disc issues in addition to lumbar, it will confuse things, and the spinal cord in the neck can generate pain in the legs. These are the same nerve axons (cells) as they travel to lower body parts that pass through the neck.

I had this situation call funicular pain, and because surgeons could not correctly map my pain, I was refused 5 times. I came to Mayo to a surgeon who understood this. I have a bulging lumbar disk, but it is asymptomatic. I had a cervical fusion which solved all the pain that I had all over my body and legs.

It's also possible that you surgeon doesn't want to consider a possible bad result on his record of his surgery, and it is easier to send you away than confront a possible failure. I think a second opinion is a good idea, and do that at another facility not connected with your current surgeon because doctors don't want to challenge the opinion of a friend and colleague.

Do yo have another surgeon in mind at a respected institution?

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Jennifer, how can I find a Mayo Dr to help me. I have extreme right side butt pain into hips with numbing in foot last 3 toes so either S1 or L5. No local doctors have been able to help. MRI doesnt show really much. I do have fusion L5 S1 2023.

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@mcoffee

Jennifer, how can I find a Mayo Dr to help me. I have extreme right side butt pain into hips with numbing in foot last 3 toes so either S1 or L5. No local doctors have been able to help. MRI doesnt show really much. I do have fusion L5 S1 2023.

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@mcoffee The first thing would be to check if your insurance is accepted at Mayo. Here is the insurance information page. https://www.mayoclinic.org/billing-insurance
You can also call them to be sure.

To request an appointment, you can use this link. They will ask to have records and imaging sent in, so have that information collected. You should also write a letter describing your history and symptoms.
http://mayocl.in/1mtmR63

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