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My doctor doesn't find a spine problem; what else could it be?
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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Have you been to PT for pririformis stretching?
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1 ReactionThanks so much, I really appreciate help like this. . The 2 SI shots in my mind weren't effective as the lidocaine didn't offer relief but the steroid offered some improvement after 10 days. This is why I'm not convinced it's that, but it did help.
Also there's this connection to the upper part of my back (underneath my shoulder blade down the right side of my back to the side of my waist gets a numb tingly feeling (the pain starts at the waist/hip area on down) that always coincides with the main nerve pain of the lower right lumbar/buttocks issue and back of legs symptoms. This has always been there for 5 years, it's just that the recent leg symptoms are new and the increased back pain. My PCP back then told me these things shouldn't be connected but they have to be in some way as it's one long connected trauma from under my shoulder blade to the back of my leg. Up to now I/we have been concentrating on the back/leg symptoms,. I did get a thoracic MRI almost 2 years ago, that showed mild multilevel thoracic spondylosis, with degenerative disc disease from T6-T11. No evidence of spinal canal or neural foraminal stenosis. T6-T7 small right paracentral disc protrusion. Multilevel endplate Schmorl's nodes, including mild edema associated with T7 inferior. Endplate Schmorl's node, and this it said, could represent a recent defect. Also Mild thoracic kyphosis. At the time my PCP just said it didn't seem significant, but I'm not sure
Frankly I have not talked about this with recent doctors because the pain I'm having seems unrelated, but now I'm wondering, as it seems connected in some ways. Not sure your thoughts on that?
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2 ReactionsI have not but pain DR. did press on it prior to my SI shot, and he didn't seem to think it was that, but I'm unsure
I have had injections of all kinds in just about every conceivable place in my lower spine and pelvis. Only the very first epidurals helped, for about 2 weeks. Even then, the feeling in my buttocks was there, just not painful. That pain?feeling in the buttocks has always been there... for eight years.
MRI here, there, everywhere,. I've had aeveral over the years. I tell the doc where the pain is and she orders the MRI. That's all I know. Thanks for checking in.
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2 Reactions@dougs72
You seem to have a lot going on in your thoracic spine. Have you gone to an orthopedic spine specialist who has high patient ratings to get their opinion about your symptoms and look at your MRIs? Did you have your lumbar MRI show anything?
i've had multiple lumbar that do not show anything, I always assumed that since my pain is mostly right hip, lumbar buttocks, with symptoms back of the leg, that that's the area of concentration. Can thoracic stuff like this even be connected to that?
I do believe spinal cord impact at the thoracic level can cause problems below the level. For example, I had C5-C6 cervical spinal cord flattening due to spinal stenosis and degenerative disc disease and it affected my bladder and walking.
You may have some radiculopathy. I also looked up a spinal map and symptoms and noted that the T12 nerve root is linked to buttocks.
@dougs72
Did you say that you already had a pelvis/hip MRI and did it show anything?
Any autoimmunity in your family? Even small things like psoriasis.
I don't know if you mentioned in a previous post your age.
Are you familiar with dermatome maps? If not, you can find a million images of the map with a basic Google search.
All areas below the skull are connected to major nerve roots that are connected to the spinal cord, to the left and the right of the cord.
A lot of times you can look at the map and based on where your pain is, you can match it to a nerve root and vertebral level. This indicates nerve compression or displacement. If you then look at your radiology reports, if you see that particular disk is bulging or there is spondylosis, you can ask your doctor about it.
The crummy thing is that an MRI is a snapshot of one particular moment in time. I make it a point to push myself the before a scan. That way I'm in pain and inflamed. Staying away from anti-inflammatories for a couple of weeks before a scan helps too.
Something to consider: insurance companies have a long list of requirements that need to be met before they will pay for various therapies and treatments. Your doctor knows this. He might be running through these requirements to not only satisfy your insurance company, but also as a way to rule things out and reach a diagnosis. He's running a differential in his head. If yes here, then go here. If no here, then this is ruled out.
It's incredibly difficult to share all my knowledge in a forum. I have a ton of questions that make giving my thoughts difficult.
You obviously have osteoarthritis in your spine. Age related? You are probably irritating your back with basic and daily activities because there is weakness there. This is causing intermittent swelling that then presses on nerves which also get irritated and cranky. It becomes a vicious cycle.
OR you have an underlying inflammatory disease process going on and the wrong type of specialist is treating you based on the wrong differential to begin with.
Not very helpful, I'm sure. If nothing else, I hope the dermatome map opens up new dialog with your doctor.
It might be worth getting a new set of eyes on your case. A second opinion.
Last thought: in some people, Schmorl's nodes can cause pain. Especially if there is edema in the same area. That swelling is actually being caused by the node. Swelling=pain.
Keep me posted on how you're progressing. I'm sorry I can't make this easier for you.
It took from 1990 to 2022 before I was correctly diagnosed. In the meantime, a heck of a lot of irreversible damage has been done. I get it.
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3 Reactionsyes, only a couple small hernias noted , but not the bad kind. They are not linked. At this point, I'm getting an abdomen CT scan next week, a hip xray, as that's been a few years since the last, an EMG on 7/11 (also been 3 + years since the last one) , and a shot next week to rule out facet joint syndrome. I'm also going to present the thoracic results at my next appt, to make sure there is no correlation.
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