L5S1 Radiculopathy in left foot

Posted by jorgy20 @jorgy20, Oct 15, 2022

I’ve recently been accepted for a medical exam and surgical consult at Mayo on Nov 8 after sending my mri and emg results for review. I’ve been dealing with severe nerve pain in my left foot for 7 weeks now. It had started to get better after second week but emg test made it really fire up. I had a bilateral transforminal steroid injection as week ago now with only minor relief.

Is anyone else dealing with this and how do you cope with waiting weeks to be seen? I haven’t been able to work since it began. I am doing PT and very light chiro with cold laser treatments.

Does this pain ever go away on its own or is surgery the only option? My mri shows my age (45) deterioration but no spinal column compression, minor bulges on l3 and l2 with some l5 forminal narrowing on my right side with no obvious signs of compression. My pain is in my left foot and some minor muscle spasm above the outside of left ankle. What could be causing this and if Mayo is scheduling a surgical consult does that mean they saw something my docs in Des Moines didn’t see and I likely need surgery? If so, how do I keep going like this for another 3 weeks prior to seen? Thank you all!

Interested in more discussions like this? Go to the Spine Health Support Group.

@jorgy20

@jenniferhunter following up on your comment here. We went up to Mayo and neither person I met with saw anything in my mri where they would offer surgery. So they referred me to neurology. So waited a week and came back up to get the suggestion it might be plantar fasciitis…. I saw my podiatrist the next day and she could not believe that was even suggested…. It’s not. It’s nerve pain and follows the L5S1 nerve root. I let the Nero know and they referred me back to surgery. Surgery in our meeting said no need to try injections again as they didn’t believe it was back related pain. Now they say to shoot the nerves again apparently. Met the injection doc today and he can’t believe this was mayo’s response either.

While I’m glad it’s not something like a neurological disorder, I know what I’m feeling and I know the answer is not to pump me full of gabapentin and hope it goes away (as the Mayo surgeon suggested sometimes these just go away) but no idea if in a year or two or tomorrow….

I went to NE Spine as it is the group my alma mater uses and they really couldn’t believe the Mayo response either. Yes my mri isn’t horrible, but it’s not great either. There’s also more to looking at a picture. My symptoms largely go away when I lay down on my back. Mri was taken from on my back. It fires up when I stand and when I sit (when my foramen are under pressure) and I have significant weakness in my leg with a lot of muscle mass lost and stretching my legs can cause serious shooting pain. They suggested it’s foramen narrowing. Suggested an ALIF L5S1. A doc in iowa and in Nebraska suggested Mayo won’t operate if they don’t see it as textbook in the imaging. So now, based on my experience, why they even accepted me up there in the first place?

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@jorgy20 Thank you for following up here. Did anyone suggest a standing or seated MRI? There are places that do those. Sometimes a full spine standing X-ray is done. Was there any comparison on imaging like an X ray in different positions looking for slipping of vertebrae that may only happen in the positions that gives you the pain? When you stand, what is your posture like? Are you stooped over? Have you tried any physical therapy? I remember, you were seeing a 6th year neurosurgery resident at Mayo. Those clues about how your pain changes with your posture and body position are very important to communicate to the doctor.

Mayo does have an Office of Patient Experience that you can contact and it does result in a review of the records if you feel the visit was unsatisfactory. They may assign a different doctor at Mayo.

There was also this document about how other problems can mimic a spine problem. I don't understand this well enough to comment on that, but you could show this to your doctors, or even the doctor at Mayo and ask if your issues are similar to what is explained in this document. You could do that on the portal.

"How to identify and treat lumbar plexus compression syndrome (LPCS)"
Posted on March 30, 2017 by Kjetil Larsen
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

The author, Kjetil Larsen, is also on facebook and posts this regularly about patients he sees. You could ask him a question and see if he comments. Obviously no one can diagnose over the internet, but you can learn how problems like this occur.

Surgeons do have to figure out exactly where the pain is coming from, because, otherwise, if they operate, it might not solve anything, and they wouldn't want to put your through unnecessary surgery.

I know this is frustrating. I went through stuff like this because surgeons kept missing my diagnosis and coming to Mayo made all the difference for me. There were 5 surgeons before Mayo who all got it wrong and wouldn't help me. Get as many opinions as you need from expert surgeons. My Mayo surgeon was Jeremy Fogelson who was trained at Mayo and teaches in the neurosurgery program. He is a deformity specialist and does some big surgeries and simpler ones like my cervical fusion. Will you be asking your current specialists about the changes in your symptoms with standing and sitting?

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@jenniferhunter Dr Kumar was who suggested planter fasciitis in neurology. Yes, I’ve asked the question about sitting or standing mri to all 3 and it was shrugged off. No other imaging offered. I spent a lot of time discussing what I was experiencing, and asking questions. Still don’t have anyone offering an answer to if I continue to wait it out, will permanent damage occur. No one will say.
Yes on PT, for over 3 months now. They couldn’t believe Mayo (of all places) suggested not doing anything or that it could be planter fasciitis, and really haven’t given me any indication of what it could be.
I just don’t know why they even offered to see me in the first place when they had my imagining etc and didn’t see anything. Could have saved me weeks, travel and hotel by just saying so if they are only going to go off of mri and it’s not enough for them to offer anything. Beyond disappointing.

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@jorgy20

@jenniferhunter Dr Kumar was who suggested planter fasciitis in neurology. Yes, I’ve asked the question about sitting or standing mri to all 3 and it was shrugged off. No other imaging offered. I spent a lot of time discussing what I was experiencing, and asking questions. Still don’t have anyone offering an answer to if I continue to wait it out, will permanent damage occur. No one will say.
Yes on PT, for over 3 months now. They couldn’t believe Mayo (of all places) suggested not doing anything or that it could be planter fasciitis, and really haven’t given me any indication of what it could be.
I just don’t know why they even offered to see me in the first place when they had my imagining etc and didn’t see anything. Could have saved me weeks, travel and hotel by just saying so if they are only going to go off of mri and it’s not enough for them to offer anything. Beyond disappointing.

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@jorgy20, this sounds like a situation that should be shared with Mayo Clinic's Office of Patient Experience. I encourage you to contact them.

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Staff are available to discuss cconcerns you have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon.

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Hi Jorge-
I read with interest your post and subsequent thread of responses and follow-on discussion…see my post earlier regarding neuropathy in my left foot.
I have had the condition since I think 2008 or maybe 2009….subsequent to my fusion of L5/S1 in 2007. Docs tell me the condition is due to scar tissue, which of course they say can be removed with additional surgery!?!?
Yes, it is uncomfortable to live with, but in my case tolerable (age 78)…up until I developed the blister and subsequent sore on my ankle bone.
Prior to that it bothered me mostly in the evening hours while watching tv…my foot gets “freezing cold”, probably due to the lack of circulation.
I find it uncomfortable to wear socks and anything that confines the foot. I am truly concerned with the current condition however…a wound that won’t heal!
In any case, I will avoid additional back surgeries at all costs!!!
Best of luck to you with finding a non-surgical solution!
Bill

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@colleenyoung

@jorgy20, this sounds like a situation that should be shared with Mayo Clinic's Office of Patient Experience. I encourage you to contact them.

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Staff are available to discuss cconcerns you have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon.

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Thank you very much. I did ask the same to neurosurgery and they are going to have another doc look at me in their group.

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@burrkay

Hi Jorge-
I read with interest your post and subsequent thread of responses and follow-on discussion…see my post earlier regarding neuropathy in my left foot.
I have had the condition since I think 2008 or maybe 2009….subsequent to my fusion of L5/S1 in 2007. Docs tell me the condition is due to scar tissue, which of course they say can be removed with additional surgery!?!?
Yes, it is uncomfortable to live with, but in my case tolerable (age 78)…up until I developed the blister and subsequent sore on my ankle bone.
Prior to that it bothered me mostly in the evening hours while watching tv…my foot gets “freezing cold”, probably due to the lack of circulation.
I find it uncomfortable to wear socks and anything that confines the foot. I am truly concerned with the current condition however…a wound that won’t heal!
In any case, I will avoid additional back surgeries at all costs!!!
Best of luck to you with finding a non-surgical solution!
Bill

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Hi Bill,
I’ll see if I can find your post. I know everyone says to avoid fusions and I really hope I can, but I have nerve pain in my feet and numbness in my leg and that’s been keeping me from my job and being a dad. I’m 45 and have been out for over 3 months.

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@jorgy20

Hi Bill,
I’ll see if I can find your post. I know everyone says to avoid fusions and I really hope I can, but I have nerve pain in my feet and numbness in my leg and that’s been keeping me from my job and being a dad. I’m 45 and have been out for over 3 months.

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U can find my post under neuropathy group…I have always been told it is neuropathy…guess it’s really what you called it as it is being caused by scare tissue from the surgery wrapped around the nerve…at least that’s what the neurosurgeon told me…he wanted to open up the back, go in and remove the scar tissue…said it would be like when I was a child and had to have bubble gum removed from my hair…one slip of the knife and he cuts the nerve making me an invalid…no thanks - I’ll live with the discomfort although at times it’s not fun…frustrating!
Good luck!
Bill

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I had very simialr symptoms due to a large synovial cyst pressing on the left S1 nerve root. Very obvious from the MRI. Based on past experiences (I'm 72), I wanted to get it removed. Talked to 2 back surgeons and went with the one who recommded fusion of L5/S1. Had cyst removal and fusion on 10/31. I am now significantly improved - much better muscle strength and balance. Can walk 3 mi insted of just one. HOWEVER I still have lots of tingling and numbness in my left outside toes and ankle. Had this before surgery and its starting to look like permanent nerve damage- won't really know for 10 more months.

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