My doctor doesn't find a spine problem; what else could it be?

Posted by dougs72 @dougs72, Jun 12 3:53pm

About 5 years ago 2 events happened:
1) I picked up a cooler and felt something rub together or shift in my lower right back/buttocks. The pain went away after being in bed a few days, but I had an odd sort of vibration feeling in the front of pelvic area.
2) 3 months later I came down hard on one side of my body while playing frisbee. This created a bad pain in lower right back and back of thigh. The leg pain went away for the most part, but the back pain and hip cramping, groin pull pain,nerve pain never did. Over the following 3 years I' had:
-2 lumbar MRIs- degenerative disc disease is only thing of note
-EMG- negative
- 2 epidurals with little to no effect.
-2 failed PT attempts
-2 otho Dr. and a neurosurgeon visits. They don't know what's wrong

3 months ago, It became really bad and then I reached down to my right to pick up a pick of paper on the floor, and bam, that shifting feeling again...and now, it never got better, especially the back of the leg pain while walking and groin pull pain. I decided to go to a new pain management Dr. who thinks it SI joint. 2 steroid shots later and it's a little better, but I still can't walk more than 10 steps without pain in my leg and back. I'm scheduled for lidocaine injection in the facet joint next week to rule that out, but I had that a couple years ago, and it didn't work. Also have another EMG scheduled next month.

Things that help with pain: Generally sitting forward somehow stretches the nerve compression, so that's tolerable, especially bending forward. That's about it.

I cannot twist to the right at all, without major back cramping/pain feeling, into my hip and back of thigh.

I'm crying all the time and fell helpless cause I cannot get an accurate diagnosis, and the tests are not showing things that would cause this. Also, I feel like there might be 2 things going on at once. It doesn't seem like piriformis, given sitting is ok, especially leaning on my left side.

I apologize for this long post, but man I'm struggling with this. My daughters wedding is in 2 months.

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@dlydailyhope

@heisenberg34

What level is your pain pump implanted? See the following information about MRI questions with pain pumps. My understanding is they can reduce the strength of MRI to 1.5 rather than 3.0 if anyone has metal (I need this because I have a metal cage around C5-C6). The link also mentions something about model/year/battery concerns.
https://mriquestions.com/spinal-cord-stimulators.html
Do you know the model of your pain stimulator and when was it put in? Has it helped you manage pain at all? If not, have you asked about getting it taken out? Did your pain get worse after the pain stimulator was installed? Have you had EMGs/nerve conduction studies before and after it was installed for comparison? It could be compressing nerves/nerve roots or moved causing worsening pain.

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Ha, ha! That's a lot of questions. Let's see. The pump sits in the right front of my abdomen. I hope to find out from the imaging centeer what the problem is on Monday am. I originally had a Medtronics scs, but not sure what model. When it stopped working in early 2021, I had the battery replaced with a NEVRO scs battery, which also did not work. I had my pain pump implanted last year (2023). It has never provided any pain relief. Are you confusing pain stimulator with pain pump? I had the SCS removed last month. EMG was done back in 2017. I am hoping to get an updated one in July. You have to wait a long time for some of these appointments. You would think that there would be some sort of triage in place in case you were in desperate need of an appointment.
Thanks for you input. Much appreciated.

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Thanks to everyone who repled to my post. I am in limbo right now. I will update when I find out omething definitive.

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@heisenberg34

Thanks to everyone who repled to my post. I am in limbo right now. I will update when I find out omething definitive.

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@heisenberg34
Wishing you the best on getting answers and help. It seems like your pain pump/spinal cord stimulator are not really helping you. They should check if placed correctly, using the right medications, and narrow down the source of your pain to ensure you are being treated appropriately. The EMGs/nerve conduction studies should help provide information on how well your CNS is communicating with your PNS and muscles. It might also help to see if you have small fiber neuropathy via punch biopsy to know if adding to your pain sensations. You are not alone…we are praying 🙏 for you.

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@dlydailyhope

@heisenberg34
Wishing you the best on getting answers and help. It seems like your pain pump/spinal cord stimulator are not really helping you. They should check if placed correctly, using the right medications, and narrow down the source of your pain to ensure you are being treated appropriately. The EMGs/nerve conduction studies should help provide information on how well your CNS is communicating with your PNS and muscles. It might also help to see if you have small fiber neuropathy via punch biopsy to know if adding to your pain sensations. You are not alone…we are praying 🙏 for you.

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Thanks. This has been a very frustrating journey. Always good to have prayers.

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