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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heisenberg34 | @heisenberg34 | Jun 21 8:40am

I can't help but notice the number of commenters who say that they made a particular movement (bending down. picking something up, twisting, etc.) when "suddenly" something popped, tore, or some other kind of relatively simple simple thing happened. In my own case after seemingly have recovered from a bad fall (about 7 months), I was out weed whacking. You know how you sort of twist your torso back and forth. Well, I finished up and went into the house. About and hour or so later all this pain came rushing in... lower back, buttocks, down my right leg to my foot. All the pain that I thought had been resolved. I had not felt that since my accient. With all that said, I am curious as to how many of you had any kind of accident or something else that brought you pain, but then subsided until that "sudden" return.

dlydailyhope | @dlydailyhope | Jun 22 2:34pm

In reply to @dougs72 "Hello- Is it appropriate in this forum to ask for Neurologist recommendations in a particular area..." + (show)

@dougs72
I don’t see why not. Let people know the region you live (no address/personal details) and the distance you are willing/able to travel and what you need help getting diagnosed by a neurologist.

dlydailyhope | @dlydailyhope | Jun 22 2:42pm

In reply to @heisenberg34 "I can't help but notice the number of commenters who say that they made a particular..." + (show)

@heisenberg34
It sounds like your weed whacking movements/twisting and vibration of the tool aggravated nerves that haven’t been irritated in a while. I have this happen to me when I do something new or when I do something I haven’t done in a while. I aggravate everything and pay a price for a while until things calm down again. The best you can do is stretch/strengthen core and limbs and warm up before doing any activities and not do too much at one time. Take regular breaks and work in smaller chunks of time. It may help to pre-apply nerve pain medication or patch and back brace to help control wide ranging movements.

heisenberg34 | @heisenberg34 | Jun 22 2:52pm

In reply to @dlydailyhope "@heisenberg34 It sounds like your weed whacking movements/twisting and vibration of the tool aggravated nerves that..." + (show)

Unfortunately, my pain has been nonstop for three and a half years and getting worse. Tried waking short distance for a couple of days. Awful pain for more than a day. Tried riding my bike, 1 mile day 1; 1.3 miles day 2. Excruciating pain that took a full two days to subside. For the past few days waking is extremely difficult; balance is not good. I guess I will have to be crawling into the ER in order to get any treatment.

dlydailyhope | @dlydailyhope | Jun 22 3:18pm

In reply to @heisenberg34 "Unfortunately, my pain has been nonstop for three and a half years and getting worse. Tried..." + (show)

@heisenberg34

Did anything show up at all on your EMGs/nerve studies? Did you have an MRI of your hips/pelvis? Have you ever had small fiber neuropathy skin punch biopsy for sensory nerve pain? Have you seen a neuromuscular specialist in addition to orthopedic specialists?

dlydailyhope | @dlydailyhope | Jun 22 3:23pm

In reply to @heisenberg34 "Unfortunately, my pain has been nonstop for three and a half years and getting worse. Tried..." + (show)

@heisenberg34
P.S. Did you have an assessment and MRI of your brain to see if something is behind your central nervous system registering pain signals?

heisenberg34 | @heisenberg34 | Jun 22 4:37pm

In reply to @dlydailyhope "@heisenberg34 P.S. Did you have an assessment and MRI of your brain to see if something..." + (show)

I was supposed to have a pelvic mri Monday but they just canceled it due to having a pain pump. It’s supposed to be mri compatible, so I’m ready to give up.
Trying to find an empathetic doc here is just about impossible.

dlydailyhope | @dlydailyhope | Jun 22 4:51pm

In reply to @heisenberg34 "I was supposed to have a pelvic mri Monday but they just canceled it due to..." + (show)

@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.

dlydailyhope | @dlydailyhope | Jun 22 4:56pm

In reply to @heisenberg34 "I was supposed to have a pelvic mri Monday but they just canceled it due to..." + (show)

@heisenberg34
P.S. I would call them and talk to the supervisor about your model of pain stimulator, year implanted, MRI compatibility and if they can schedule you on a lower powered machine (1.5). If you have had MRIs of lumbar spine, etc. with the pain pump in and no problems, let them know.