Anyone here have knowledge/experience with this horrible pain and how to get it diagnosed?
Interested in more discussions like this? Go to the Osteoporosis & Bone Health group.
@lesb0298, welcome. I've added your discussion to the Spine Health too. I think members like @mfratt @basslakebabe19 @loyal @kimberlynitz66 @jenniferhunter can share some tips and thoughts with you.
I think you might appreciate the helpful posts shared in this related discussion:
– Sacroiliac joint, piriformis, or sciatica? https://connect.mayoclinic.org/discussion/sacroiliac-joint-piriformis-or-sciatica/
Les, it sounds like your first stumbling block is to actually get a diagnosis. You believe your symptoms might be Piriformis Syndrome, but you haven't been diagnosed yet or able to get this confirmed. Is that correct? Have you been able to see a spine specialist?
@lesb0298 mine turned out to be rheumatoid arthritis together either a labrum tear plus trochanteric bursitis all in the same hip! It wasn't piriformis after all. I didn't know that I had RA until I had an MRI. So now treating the PMR with predn as well as the RA with methotrexate. Once the methotrexate starts to work, hopefully I can reduce the prednisone,
@lesb0298 I have found a website with lots of good technical articles about physical problems. There is a lot to read, but it may help provide details about different issues that can have similar overlapping symptoms.
This article discusses issues related to the lumbar spine and pelvis, and there are many others at this site.
– How to identify and treat lumbar plexus compression syndrome (LPCS)
A good physical therapist may be able to help narrow down some of this and make recommendations. Have you seen an orthopedic doctor about these symptoms? Colleen's suggestion of a spine specialist is good too because a spine problem can cause similar symptoms.
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Thank you Colleen, I was diagnosed via an ultrasound guided injection back in 2017 “ish” with piriformis syndrome. It was never that bad that I could not walk. One year ago I had spinal fusion surgery which went well (totally different issue). My piriformis was not bothering me at all. Then went for a vein scan due to swollen foot and they had to twist my left leg (where this is) and I cried all the way home; almost like they pulled something out of where it should be. From that day I’ve been in this wheelchair, did PT specifically for piriformis syndrome which should not have been done honestly. Right now I have to see if Mayo does specifically a “diagnostic ultrasound” for the piriformis muscle. After many calls there is not a hospital or imaging center that does this specifically for a muscle; apparently it required a specific machine. That’s where I am right now.
Thank you Kimberly, I’ve found out that an MRI cannot diagnose piriformis syndrome. I need a “diagnostic ultrasound for this specific muscle”… and I’ve not found a place that does this near me, I’m sending a note to Mayo today if I can remember how to do that to see if they have a machine that does this,
Hi Jennifer, many thanks. I’ve been to 3 ortho’s. I’ve done PT specifically for piriformis syndrome which I later found out is not good to do. You don’t want to stretch the piriformis at all. Piriformis Syndrome is an issue where the spine is resting on the piriformis muscle and aggravating it, thus pain so great I can’t walk. An MRI cannot diagnose this so I’m sending a note today to Mayo to see if they do this “diagnostic ultrasound” specifically to diagnose piriformis syndrome.
I'm confused. When I had piriformis syndrome, the treatments were PT, walking & x-ray guided steroid injection. As far as I can see, everywhere I look, that is still the recommendation.
In over 5 years of struggling, none of these therapies was successful for more than a few weeks for me because the underlying cause was a hip badly deteriorated by severe osteoarthritis. At 54, the surgeon said I had the hips of an 85 year old. The problem was that the unstable hip was causing the piriformis to repeatedly press on the sciatic nerve. The solution was hip replacement, and 17 years later I have not had a recurrence of the piriformis issue.
I think you mentioned in another discussion that your ortho diagnosed osteoarthritis in your hip, and suggests it is the cause of your pain. The doctor should be able to show you the x-rays that show the damage, and compare them to a normal joint.
What exactly makes you question the arthritis diagnosis? Where did you learn about a specific MRI to diagnose piriformis syndrome?
I understand reluctance to undergo unnecessary surgery, but if you have exhausted the "usual" treatments without success, maybe it is time to consider the joint replacement. Has this been recommended by more than one of the orthopedists you saw?
Thanks for all this Sue. I have done massive extensive research on piriformis syndrome. I can’t walk; in a wheelchair and sleep in a recliner. I’ve been through PT and then was told that was the worse thing I could have done; the piriformis should not be stretched; it just causes more pain, PT never relieved me of any pain, I’ve also done numerous injections; none of which helped the pain for more than 2 days. That’s what the piriformis syndrome is, but in reverse of how you stated; the sciatica nerve actually presses on the piriformis muscle. The doctor did show me the X-ray and the MRI and it’s not that I don’t agree that I could have a bad hip, but no one is looking or has the ability (right equipment-which is “diagnostic ultrasound”) to focus on what I need to know. I’m on a FB forum for piriformis syndrome and have gained a lot of knowledge about this muscle from that page. There are only 5/6 doctors in the US that have experience in removing it, and they don’t take my insurance. If a “release” is needed, I think Mayo may do that which is what I’m trying to find out. Yes I’ve been to 2 ortho’s. I’m not a bit reluctant to undergo surgery again, I just want it to be 100% the right surgery.
Interesting, here in acanada I was told that MRI could diagnose piriformis as it is why I had one done!
I’m not surprised Kimberly… I don’t really trust doctor’s anymore; from the MRI is clearly told me (ortho) he could not tell if the sciatica was resting on the piriformis. Just said, “you need a hip replacement; you have osteoarthritis.
Did your doctor tell you from the MRI that you had piriformis syndrome?
No they thought I had due to symptoms. Turns out it is RA and a labrum tear, and bursitis. As well as the PMR. 🙄
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