Neuropathy from lumbar stenosis?

@westcom I am a spine surgery patient for cervical stenosis. I wanted to share some information with you. Consider the possibility that along with your lumbar spinal stenosis and symptoms related to that, there can also be a muscular syndrome that mimics a spine problem adding more symptoms and confusion in your diagnosis.

I like to refer patients to this website with very detailed articles related to physical problems that is written for physical therapists and there are several spine related articles.

Please see this link:
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
for the article, " How to Identify and Treat Lumbar Plexus Compression Syndrome (LPCS)"

Here is an excerpt which describes a similar issue to what you have described.

"This case report describes a 46-year-old female who experienced symptoms of low back pain with pain radiating into the right gluteal area. The thoracolumbar junction is described as a predominant contributor to the symptomatology. Its complementary role to the lumbosacral junction is enumerated. – Sebastian, 2006

A frequently overlooked cause of testicular and buttock pain is irritation of the T10-L1 sensory nerve roots, the genitofemoral nerve, and the ilioinguinal nerve. – Doubleday et al., 2003"

Does this sound like something familiar to you? Perhaps you may want to share this information with your medical provider or physical therapist.

Jennifer: Thank you for the information and suggested related possibilities. I will check them out. I also have a T11-12 compression of the spinal cord which is causing balance instability and will require surgery. My neurosurgeon ( who did his residency at Mayo Rochester) is unsure about laminectomy of L4-5 with fusion ( I have a spondolithesis there) because symptoms don’t correlate with MRI findings. No leg pain, just intermittent low back pain and the PN that is debilitating.

@westcom I was a patient that surgeons couldn't correlate the imaging with my symptoms, and 5 of them got it wrong before I came to Mayo. The spinal cord compression in my neck was causing pain all over my body. It's called "funicular" or referred pain. My Mayo neurosurgeon knew about this, and if fact, I found out about it because of one of his papers. Here is a link to medical literature that describes it.
http://europepmc.org/article/PMC/3111492
I think that if you have something happening at a couple different levels at the same time, it might bring this on. I have a bulging lumbar disc, and I had cord compression at C5/C6. After cervical fusion, it stopped all the pain. When you have listhesis, and one level is slipping over another, essentially that makes the spinal canal smaller at that location and it could put more pressure on the spinal cord if there is no fluid space left around it. I had 2 mm of slipping and when muscle spasms moved that, it caused me to limp with an uneven gait. I couldn't get any surgeon to help me until I came to Mayo. I sent a copy of this literature when I applied to be seen at Mayo.

Do you have surgery scheduled now?

Jennifer: This is so helpful. I didn’t mention that I also have stenosis at L1-L3 just not quite as bad as L4-5. They would do a laminectomy of those levels as well. Hence, the lumbar plexus complex you mentioned makes sense as I also have constant genitourinary pain and that is a nerve in the complex. I also have a history of referred pain in other instances. I do not have surgery scheduled yet. The neurosurgeon want to review the results of an upcoming EMG on my left leg. I have left knee weakness 9 months post-op TKR which could also be caused by the lumbar issues. I’m going to raise the lumbar complex and referred pain suggestions up to the neurosurgeon; I feel confident that he will consider. I’ve had other consults who wanted to do surgery and really didn’t address the nerve pain; the current neurosurgeon is concerned. Very glad your problems were eliminated with surgery.

I pass on this information as much as I can because so many surgeons missed it with me. The best time to show them something new like this is early in your relationship with the doctor before they come to a decision about your care. Once they have formed an opinion, they wouldn't want someone pointing out a mistake or error of omission. In my case, after I found the article on funicular pain, not one single doctor who had evaluated me (and some for 10 years as a patient of theirs at that facility) would help me address this with the spine surgeon who missed it. He was a department head, and none of his colleagues were willing to tell him he'd made a mistake in judgement. That leaves a patient looking for a new doctor. Always make sure to introduce this as a question such as, "Doctor, I found this literature about a spine case that seems to be similar to what I am experiencing. Do you think this is part of what is wrong?" Let them be the brain in the room. Saying "part of what's wrong" leaves room for whatever else the doctor was thinking.

With funicular pain, there is no diagnostic test for it ahead of surgery, and when decompression surgery fixes the problem, it confirms that funicular pain was present. A clue would be if you have a spine epidural injection that takes away ALL the pain you're experiencing, it suggests the possibility of funicular pain. That was true in my case, and because the surgeon didn't understand the results, he ignored them or didn't believe me. I think it was meant to weed me out as a surgical candidate because ultimately, he suggested I may have MS and suggested testing for it. There was no indication of MS on my MRI images, and he denied surgery because he didn't know if it would be worth it because "it would address so few of my symptoms." The only truth in that statement was that he didn't know. I knew surgery would help me and it did, so I presented that information first with my request to be seen at Mayo.

Would you be willing to share how well your doctor receives this information?

@westcom I was a patient that surgeons couldn't correlate the imaging with my symptoms, and 5 of them got it wrong before I came to Mayo. The spinal cord compression in my neck was causing pain all over my body. It's called "funicular" or referred pain. My Mayo neurosurgeon knew about this, and if fact, I found out about it because of one of his papers. Here is a link to medical literature that describes it.
http://europepmc.org/article/PMC/3111492
I think that if you have something happening at a couple different levels at the same time, it might bring this on. I have a bulging lumbar disc, and I had cord compression at C5/C6. After cervical fusion, it stopped all the pain. When you have listhesis, and one level is slipping over another, essentially that makes the spinal canal smaller at that location and it could put more pressure on the spinal cord if there is no fluid space left around it. I had 2 mm of slipping and when muscle spasms moved that, it caused me to limp with an uneven gait. I couldn't get any surgeon to help me until I came to Mayo. I sent a copy of this literature when I applied to be seen at Mayo.

Do you have surgery scheduled now?

@lewin Hello, and welcome to Connect. When I came to Mayo, I had already been turned down by 5 spine surgeons elsewhere. At Mayo Rochester, I saw Dr. Jeremy Fogelson who did a single level cervical fusion without hardware. I elected to stay in a neck brace for 3 months until the fusion process began. That was worth it and the time went by faster than I thought it would.

Dr. Fogelson is a spine deformity expert, and he teaches other surgeons not just at Mayo, but at spine conferences. He does both cervical fusion and disc replacement. Here is his profile and my patient story (and another)
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
If you did want to seek an appointment at Mayo for any of their campuses, please use this link to register, and someone from Mayo will contact you. It will walk you through a few simple steps and ask what you main concern is. Dr. Fogelson practices at Rochester.
http://mayocl.in/1mtmR63