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

Posted by sbraden1234 @sbraden1234, 6 days ago

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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@dlydailyhope

@sbraden1234
Are your symptoms worse after surgery than before? Have you gotten a 2nd and 3rd opinion? It sounds like you have adjacent disc/spinal cord/nerve root issues at L2-L3 and L5-S1. Have you had updated EMG and nerve conduction studies by a neurologist (upper/lower limbs)? Did you have a foot drop before surgery and do you think you had injury during surgery?

I had L3-L5 decompression and fusion surgery in August 2024. I was told it could take a full year to recover. I am dealing with pain similar to you and especially hip/hip flexor nerve pain.

Have they prescribed any pain medications like Cymbalta or Gabapentin? Were your injections in L2-L3 or just above this level to benefit all levels below? Have you tried lidocaine pain patches or creams or CBD topicals? Lidocaine pain patches like Salonpas brand place just above the pain have helped me. I place them on my spine area and stretch the extra large patches to the side a bit which relieves temporarily my hip/hip flexor pain.

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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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@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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That dermatome map seems to truly reflect my areas of pain. I am so perplexed as to why he does not think it represents the MRI finds.

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@sbraden1234

That dermatome map seems to truly reflect my areas of pain. I am so perplexed as to why he does not think it represents the MRI finds.

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@sbraden1234 He knows, but I don't think he wants to admit to a result that is a problem. He considers it a finished case. It's hard to accept this as a patient. I was getting wrong diagnoses when I was trying to get help, and I found medical literature with a case like mine right after I had been dismissed by a surgeon who told me surgery wouldn't help all the issues I had and it may be an inflammatory problem like MS. No doctor at that facility would help me with the new information because he made a mistake, and you don't point that out to a colleague who is at the top of the ladder. I had other doctors who had seen me as a patient for years there, and their advice was get another opinion and they recommended Mayo. That's what I did, and presented the medical literature with my request to be seen. It was the correct answer, and surgery solved all the problems. I had found my correct diagnosis that had been missed by 5 surgeons.

Where do you think you should look for another opinion?

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@jenniferhunter

@sbraden1234 He knows, but I don't think he wants to admit to a result that is a problem. He considers it a finished case. It's hard to accept this as a patient. I was getting wrong diagnoses when I was trying to get help, and I found medical literature with a case like mine right after I had been dismissed by a surgeon who told me surgery wouldn't help all the issues I had and it may be an inflammatory problem like MS. No doctor at that facility would help me with the new information because he made a mistake, and you don't point that out to a colleague who is at the top of the ladder. I had other doctors who had seen me as a patient for years there, and their advice was get another opinion and they recommended Mayo. That's what I did, and presented the medical literature with my request to be seen. It was the correct answer, and surgery solved all the problems. I had found my correct diagnosis that had been missed by 5 surgeons.

Where do you think you should look for another opinion?

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I have been thinking of who I might get a second opinion from. 1. Prestigious university hospital - has second opinion services, 2. An orthopedic spine surgeon that has very high ratings although he operates at the same hospital as my current neurosurgeon 3. I will be submitting my application to be a patient at the Mayo Clinic

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@sbraden1234

I have been thinking of who I might get a second opinion from. 1. Prestigious university hospital - has second opinion services, 2. An orthopedic spine surgeon that has very high ratings although he operates at the same hospital as my current neurosurgeon 3. I will be submitting my application to be a patient at the Mayo Clinic

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@sbraden1234 as I wrote before, consider consulting an MD who does not do surgery. There are orthopedists who don't do surgery, as well as spine specialists. PT can be helpful with diagnosis as well. I would vote for #3!

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@sbraden1234

I have been thinking of who I might get a second opinion from. 1. Prestigious university hospital - has second opinion services, 2. An orthopedic spine surgeon that has very high ratings although he operates at the same hospital as my current neurosurgeon 3. I will be submitting my application to be a patient at the Mayo Clinic

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@sbraden1234 To request an appointment at any of the Mayo campuses, you can get started with this link. http://mayocl.in/1mtmR63

You'll need a copy of your imaging on a CD, and they will ask you to send it in for review to determine if they can help. Mayo will return your imaging discs, but it may be out of your hands for awhile. You may want to get several copies if you are also contacting other specialists.

What I've seen when you see a second specialist at the same place is that they just agree with what your surgeon says. You may waste time waiting for that consult as well. I wasted 2 years trying to get a surgeon to help me. I wish I had come to Mayo first. My patient experience at Mayo exceeded my expectations, and they are very efficient at getting any testing done that they need. Cleveland Clinic is also good. I was researching surgeons and reading their medical papers to see if their interests were a good match for my case.

You may also get recommendations from your other doctors, neurologists, and physical therapists usually know some good surgeons because they are rehabbing patients after surgery.

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Jennifer,
Is your surgeon at Mayo whole spine or is his practice cervical?

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@gently

Jennifer,
Is your surgeon at Mayo whole spine or is his practice cervical?

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@gently My surgeon at Mayo is Jeremy Fogelson. He is a spine deformity expert neurosurgeon who also had fellowship training in orthopedic spine deformity. He does very complex surgeries for issues like scoliosis and correcting spine curvature. My single level cervical fusion was one of his simpler surgeries.

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Thanks, Jennifer, I looked for the profile with the painting you created but couldn't find it.

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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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