Jumpy reflexes and severe lower lumbar pain

@jenn1969 Welcome to Connect. I can appreciate that you are waiting for answers on imaging your spine, but I’m wondering why they are not imaging the lumbar spine also to get a full spine picture since you are having lumbar back pain? I had cervical spinal cord compression and they did image my entire spine. I had a cervical fusion at C5 C6 several years ago.

@jenniferhunter Hello!
I already had a lower lumbar MRI last month, but he wasn’t overly concerned about anything on it needing surgical intervention. He thinks it could be referred pain from cervical or thoracic. Now, has me worried about ruling out MS.

Right before my "first" lumbar surgery, the surgeon ended up doing MRIs on my cervical and thoracic spine areas.

@bajjerfan , That is good to know! Was there any issues in those areas?

@jenn1969 One of my consulted spine surgeons was mentioning possible MS, and my neurologist explained that MS will make lesions in the brain and spinal cord that do show up on MRI imaging. There was none of that in my images. When they don't know what is wrong, they will look to another diagnosis like MS and he even wanted to do a spinal tap. I objected. Here is what a lot of surgeons get wrong, and this happened to me with 5 of the surgeons I saw. They could not connect the pain symptoms I had all over my body including my legs and gait disturbances with the spinal cord compression in my neck. All 5 missed the connection and correct diagnosis.

There is a condition called "funicular pain" caused by spinal cord compression that can send pain anywhere in the body below that level of compression of the spinal cord. Your surgeon mentioning referred pain may be suggesting this. If you have compression of a nerve root, that is predictable to exactly where pain would be felt, but the spinal cord moves and floats in fluid changing position and it may get contacted in different places at different times if you have cervical stenosis. There isn't a diagnostic test for this, but if you have a spine steroid injection that takes away all the pre-existing pain, that suggest this is possible. The proof is after surgery decompresses the spinal cord and it resolves this pain, that is the proof that it existed. That is what confused 5 surgeons before I came to Mayo.

If you want to ask your surgeon about this, it's best to do that before he makes a diagnosis that could miss it, because they don't want to be wrong and have a patient point it out. If you can give them this literature before a decision is made, that would be best and simply ask if it's possible your case could be like this? That puts them in charge of the decision. If they don't understand this, you'll also find that out and you may want another opinion. My only recourse to finding this after surgeon #5 missed it was to seek another opinion. No doctor at that medical facility would help me approach the surgeon with the new information. It wouldn't change what they decide to do surgically at all because they will remove structural issues of compression affecting nerves and the spinal cord. They do need to have confidence in understanding the problem completely before going forward to surgery. and you should expect that too. Here is the study.

"Cervical cord compression presenting with sciatica-like leg pain"
https://pmc.ncbi.nlm.nih.gov/articles/PMC3111492/

@jenniferhunter, Thank you so much for this info!! I am also shocked that he mentioned MS because I had hyperreflexia when he checked my patella. That’s it!
MS is normally unilateral and not bilateral. I have no vision problems, double vision or any of the other true symptoms. My entire lower lumbar is in pain with bulging discs and a 6mm herniation with nerve involvement, L5 pars fracture (chronic) with bilateral sclerotic pseudoarthroses.
I am definitely not the expert, but I have nothing remotely hurting like this in my thoracic or cervical area whatsoever.
Ugh!! It is frustrating

@jenn1969 I had hyperreflexia too because of mild spinal cord compression. I had diagrammed my pain on a body drawing of a dermatome map and there was a dot for pain in every dermatome. This is when surgeon #5 announced I must have an inflammatory condition something like MS for example and it scared him right out of helping me. Not true of course. I found that medical literature because the term "funicular pain" was a term in a paper co-authored by a Mayo surgeon I was researching. I knew I had found a doctor who would understand my condition. He is an excellent surgeon, and also kind and compassionate. If you need another opinion and can go to Mayo Rochester, his name is Jeremy Fogelson. He is a spine deformity expert.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Yes it is so frustrating to be in pain and get a run around. You wonder how many hoops you need to jump through. I was always looking for another surgeon to consult in case things didn't work out. Mayo was the 6th consult after 2 years trying to get help while my condition worsened. I wish I had gone there first. If that may be an option for you, there is always a wait for the good surgeons, so apply as soon as you can. Check if they take your insurance first.

@jenniferhunter, You are amazing!! Thank you so much!!
We live outside of Houston in The Woodlands, and have another appointment with the surgeon I really wanted on the 7th. 🙏🏻

@jenn1969

Nothing with the thoracic, however they did decide to do the cervical after I was on the table and under for the lumbar procedures. Frankly, if there is an issue with one area they should check the other 3 of the cervical, lumbar, thoracic and sacro.