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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Profile picture for slkanowitz @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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Profile picture for smn1 @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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Profile picture for Jennifer, Volunteer Mentor @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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Profile picture for mcoffee @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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Profile picture for sbraden1234 @sbraden1234

My symptoms improved after surgery. The sciatica pain prior to the operation was excruciating. I think that was the key change. My hip pain and stabbing back pain did not go away.
The last nerve test showed a lack of reflexes in the back of the ankle and a lack of sensation at the side of the right foot. He never tested the upper limbs.
The drop foot appeared after surgery. He has gotten somewhat better over the past year.
I have wondered many times if something was injured during surgery. I was very surprised two weeks after surgery to see lab test results for soft tissue removed during surgery. After reading the surgeons report of the surgery there was a cyst deeply embedded that added an hour to the surgery to remove since its position could have impacted nerves. My right leg has never been right after surgery.
I took Gabapentin for a few months after surgery. It really was not helping so I stopped taking it.
I have not had injections at the L2/L3 site or the right S1. I am now scheduled to see a physiatrist in early December.
I have not tried the pain patches but I will on your recommendation. Thank you for the suggestions.

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@sbraden1234 It sounds as though they are avoiding your issues from the complex nature of what was done during your surgery with the cyst. Your symptoms are similar to mine and scans as well except for the foot drop which may be due to the excess handling of nerves in surgery. Can't remember who said it but you should definitely go to a surgeon not affiliated with this hospital or associated with that doctor. I hate sounding paranoid but I truly believe their money and careers are way more important to them than your suffering or their integrity and moral standing. Thank you for the post as it has inspired me to be proactive too, The dismissal of our pain and the exhaustion of driving to appointments when we can't afford to live cause we can't work is defeating at the least. I'm hoping you catch a good doctor soon.

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I'm having neurological symptoms and ongoing headaches which made me go to 3 doctors. Recently, I went to a Neuro and Spine Specialist, on physical examination he diagnosed me with C6 Radiculopathy. I did a brian MRI (screening only), routine blood work, and Cervical spine MRI.
Both brain and blood tests were normal, cervical spine MRI showed only Straightening of the cervical lordosis, mild disc desiccation from C2-C3 to C5-C6 levels and my cervical spinal dimensions are quite narrow ranging 11mm - 11.3mm. No compression, herniated disc or bone spur.
I am really having a hard time dealing with pain everyday which does not correlate with my reports.
Can anyone suggest?

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Profile picture for palei1997 @palei1997

I'm having neurological symptoms and ongoing headaches which made me go to 3 doctors. Recently, I went to a Neuro and Spine Specialist, on physical examination he diagnosed me with C6 Radiculopathy. I did a brian MRI (screening only), routine blood work, and Cervical spine MRI.
Both brain and blood tests were normal, cervical spine MRI showed only Straightening of the cervical lordosis, mild disc desiccation from C2-C3 to C5-C6 levels and my cervical spinal dimensions are quite narrow ranging 11mm - 11.3mm. No compression, herniated disc or bone spur.
I am really having a hard time dealing with pain everyday which does not correlate with my reports.
Can anyone suggest?

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@palei1997
Going through the same type of thing for over 2 1/2 years and no answers. Wish I had some suggestions for you. 😞

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