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

Posted by sbraden1234 @sbraden1234, 5 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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@sbraden1234 Where is your pain? I might be able to offer some experience. Did you have any other issues at other spine levels such as cervical? Have you sought other spine surgeon opinions?

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I hope you will see another doctor. Maybe an ortho who does not do surgery, or pain management.

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@jenniferhunter

@sbraden1234 Where is your pain? I might be able to offer some experience. Did you have any other issues at other spine levels such as cervical? Have you sought other spine surgeon opinions?

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When I walk it hurts in the right lower back, across the hip, down around the very top of my leg, in my lower leg it hurts under the knee and down the right side on the front of my leg. On the left side it hurts in the same way but does not travel down the leg.
When I bend over or move laterally it hurts in the back at the waistline and to the left down into the buttocks.
The aching seems to encompass my whole leg but feels predominantly focused on the upper thighs, side of upper leg and ankle without a sharp distinction.

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@jenniferhunter

@sbraden1234 Where is your pain? I might be able to offer some experience. Did you have any other issues at other spine levels such as cervical? Have you sought other spine surgeon opinions?

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I have not seen another spine surgeon yet, however, I am thinking that I should gather my scans and seek another opinion. It just seems weird that I can have so much pain and it does not have a matching cause. I do not have issues at other levels as far as I know. The only thing I will say is that when my back starts hurting, like when I walk, or it just hurts across the lower back my neck hurts on the left side mostly although it also has hurt on the right side. As I write this I feel like I must sound like a hypochondriac. I used to be a marathon runner, century bike rider, hiker, pickleballer, golfer. The pain in my back has stopped all the things I loved to do.

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@sbraden1234

When I walk it hurts in the right lower back, across the hip, down around the very top of my leg, in my lower leg it hurts under the knee and down the right side on the front of my leg. On the left side it hurts in the same way but does not travel down the leg.
When I bend over or move laterally it hurts in the back at the waistline and to the left down into the buttocks.
The aching seems to encompass my whole leg but feels predominantly focused on the upper thighs, side of upper leg and ankle without a sharp distinction.

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@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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@sbraden1234

I have not seen another spine surgeon yet, however, I am thinking that I should gather my scans and seek another opinion. It just seems weird that I can have so much pain and it does not have a matching cause. I do not have issues at other levels as far as I know. The only thing I will say is that when my back starts hurting, like when I walk, or it just hurts across the lower back my neck hurts on the left side mostly although it also has hurt on the right side. As I write this I feel like I must sound like a hypochondriac. I used to be a marathon runner, century bike rider, hiker, pickleballer, golfer. The pain in my back has stopped all the things I loved to do.

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@sbranden1234,
do get a second and a third opinion. I agree with @jenniferhunter; your scans indicate the sources of your pain. Work on two things at the same time. Send your scans to another surgeon (or two) meanwhile see a pain specialist.
You feel like a hypochondriac because you've been gaslit.

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I have sometimes found surgeons to be very quick and even brusque, if they determine you don't need surgery or as @jenniferhunter says, don't want to do surgery for your case.

I saw an orthopedist who does not do surgery, who spent 45 minutes with me and explained a lot about the source of my pain, even offering that I could take photos of the scans on his screen. I don't know is someone like that is available to you. Mu neurologist has been helpful. I have also found that PT's are often better at diagnosing the source of pain that the surgeon I saw.

Once it is determined that I do need surgery. a surgeon is of course needed. I would get at least 3 opinions before anyone goes near my spine! I am so sorry you felt dismissed. Your pain is real and deserves help.

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@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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I Have compression of nerve for L4-L5 L5 S1. stenosis arthritis in same areas. Orthopedic dr wanted to do a spinal fusion. ( I’ll have spondelethosis L4-L5 since 1986 and have avoided surgery by steroid injections. ). I still want to avoid surgery until last resort. I saw a pain dr last week I will have a shot in the nerve going to my feet if it works she will do radio frequency I think on the nerve to help. (From others it hasn’t worked, but it it just worked for my friend that had it last week. I posted a video that show where issues on nerves coming fro. L4-L5 impact our body. She also told me a lot of supplement people take for tingling and burning won’t help me. I hope the video helps everyone to understand The compressed nerves and stenosis impact.
I am not sure the video is allowed on this site. If not Google lower “spinal nerve anatomy chart” that will show you exactly what spinal area impacts your nerves
https://www.spine-health.com/conditions/spine-anatomy/all-about-l4-l5-spinal-segment

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@windyshores

I have sometimes found surgeons to be very quick and even brusque, if they determine you don't need surgery or as @jenniferhunter says, don't want to do surgery for your case.

I saw an orthopedist who does not do surgery, who spent 45 minutes with me and explained a lot about the source of my pain, even offering that I could take photos of the scans on his screen. I don't know is someone like that is available to you. Mu neurologist has been helpful. I have also found that PT's are often better at diagnosing the source of pain that the surgeon I saw.

Once it is determined that I do need surgery. a surgeon is of course needed. I would get at least 3 opinions before anyone goes near my spine! I am so sorry you felt dismissed. Your pain is real and deserves help.

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Thank you for the suggestion and support.

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