Possible S3 nerve damage

Posted by gravey @gravey, Mar 7, 2017

I am new to this site, I have been experiencing pain in my left buttock cheek for over 2 years, that cannot find a cause, despite having had all of the available diagnostic tests, ( MRIs, EMG, Ultrasound, X-Rays ) does anyone out there no of any other tests? I am currently undergoing PT, it has not been much help, they are starting to consider that it might be an S3 nerve issue, as I bruised my sacrum about 2 years ago. Has anyone had an S3 issue?

Liked by SISTERLOVE

Yes tried everything

REPLY
@annette50

Hi I am suffering at the exact same thing as gravey to every detail.I have severe pain in my rite buttock which makes it difficult to sit,walk,stand anything.Every morning I can barely get out of bed.After pain meds I can usually function for awhile.The pain is unbearable.And no one has been able to help me.I have had MRI and X-rays,physio,etc no one has helped they says they can’t find anything.The excruciating pain wouldn’t be there if it was nothing everyday.
Thanks
Annette

Jump to this post

@annette50 I have recently been diagnosed with symptomatic Tarlov sacral cysts. They are a type of spinal cyst. Specifically, These are also sometimes called perineural cysts or sacral nerve root cysts They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum. The sacrum is a fused triangle-shaped bone comprised of the five sacral vertebrae forming the base of the spine. The five lumbar vertebrae are located just above the sacrum, and the four coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone.

If you do not already have a copy of your MRI reading — I would obtain that. See if it mentions Tarlov or perineural cyst. They are often underreported and poorly understood by much of the medical community. If there is no mention on the reading — you can ask your radiologist to re-review the MRI and specifically ask if there are any Tarlov cysts present. Many radiologists were taught that a Tarlov cyst is a clinically insignificant finding. For many people that is the case. About 5% of the population do have asymptomatic cysts of this type. Only 1% of us have symptomatic Tarlov cysts. An excellent source of information to learn more about symptoms is: https://www.tarlovcystfoundation.org/faqs/

REPLY
@annette50

Hi I am suffering at the exact same thing as gravey to every detail.I have severe pain in my rite buttock which makes it difficult to sit,walk,stand anything.Every morning I can barely get out of bed.After pain meds I can usually function for awhile.The pain is unbearable.And no one has been able to help me.I have had MRI and X-rays,physio,etc no one has helped they says they can’t find anything.The excruciating pain wouldn’t be there if it was nothing everyday.
Thanks
Annette

Jump to this post

Request your medical records and read through all of your imaging reports in the lumbar and sacral areas. See if there is any mention of Tarlov cysts also called perineural cysts. I have multiple Tarlov cysts and they are causing cauda equina syndrome. Look up The Tarlov Cyst Foundation.

REPLY
@annette50

Hi I am suffering at the exact same thing as gravey to every detail.I have severe pain in my rite buttock which makes it difficult to sit,walk,stand anything.Every morning I can barely get out of bed.After pain meds I can usually function for awhile.The pain is unbearable.And no one has been able to help me.I have had MRI and X-rays,physio,etc no one has helped they says they can’t find anything.The excruciating pain wouldn’t be there if it was nothing everyday.
Thanks
Annette

Jump to this post

I know this thread is a bit old but have any of you had your MRI discs checked for tarlov or sacral nerve root cysts?

Many of you have the telltale symptoms of this disease.

It’s a rare and highly misunderstood disease that radiologist ignore and highly underreport on diagnostic reports.

I’ll attach a picture of mine.
They are debilitating and extremely painful. They cause symptoms similar to a herniated disc. They are usually found in the sacrum.

Good luck to you

1317B0CA-0958-48AB-836F-ABA3CB875245

REPLY

I would highly suggest to all of your doctors and PT's to check for Tarlov cysts also called perineural cysts. Most doctors refuse to acknowledge them because they are normally just an incidental finding and are rarely symptomatic. Come to find out there are lots of people that have symptomatic cysts. I would be willing to bet that a large number of "chronic pain" patients are undiagnosed with these cysts. Also, request copies of all your MRI reports to see if they were ever mentioned. If you have an MRI coming up soon be sure to tell the MRI tech. that you want all incidental findings included in the report as some radiologists don't even document these cysts. I spent 16 years with issues after falling in my kitchen and then in 2018 the symptoms started snowballing. I am currently pretty much bedridden. My insurance co. is denying my surgery so I'm in the middle of arguing that out. I live in WI but recently went to see Dr. Feigenbaum in Dallas, TX. There are only a handful of doctors in the U.S. that specialize in these cysts. You are welcome to read my other posts. I think you will find that the symptoms you are having sound all too familiar. Also, check out the Tarlov Cyst Foundation. There you will find the best initial overview. Good luck to you & take care!

REPLY
@lowth21

Thank you for replying to my post. I did not respond immediately as I was fortunate to obtain a referral to a top Neurosurgeon who also teaches neurosurgery at university. I was very interested in your response as regards “inflammation of the sacro-iliac joint”. I read the results of my pelvis MRI which stated “No accute sacroilitis is demonstrated”. I spoke to the neuro surgeon and he has ruled that out at this stage.
My Nurosurgeon has now ordered a new MRI from a new MRI machine which apparently provided a much clearer picture of the nerves. He has ordered:
– MRI – whole spine and GAD
-MRI of the pelvis
-MRN of the sacral neurography PLUS
-Nerve Conduction test of LL inc Perineal
The surgeon mentioned he has been involved in some research of PFCN (involvement of the posterior femoral cutaneous nerve (PFCN), including its perineal and inferior cluneal branches to the symptom of “sitting pain.) which he believes “could” be a cause of my pain possible caused by the epidural durin my prostatecomy some 4 years ago.
I will continue to post here when I get further results.
Thank you so much for your reply to my post
John

Jump to this post

Have you gotten relief for your sitting pain? I think I may have PFCN issues.

REPLY
@cake

Have you gotten relief for your sitting pain? I think I may have PFCN issues.

Jump to this post

Hi @cake, while you wait to get a response to your question from @lowth21, I wanted to welcome you to Mayo Clinic Connect. Can you share a bit more about the pain you experience with sitting? Have you been diagnosed with a specific issue with the posterior femoral cutaneous nerve?

REPLY

Hi GRAVEY, from Georgia in Australia Yes, I have a S 1 to 4 called a Sacroiliac Joint degeneration. It was diagnosed by all the same things you had. MRI, CT and various exploratory procedures (needles in the lower back) I stayed on high dose of pain meds while "they poked around". Pain was in the lower buttock and down the hamstrings –it got to about 10/10 "excruciating" at times but the meds stopped the pain.
Three choices to stop it : PRP, RFA or FUSION of the 4 nerves of that "S joint" will stop the nerves from sending pain messages. I selected Radio Frequency Ablation. (sort of burning of the nerve !!" because it was least invasive. Fusion for someone my age is not preferred. The other PRP I could not have because I have a very high platelet production. (technical- they put in your own platelets and try to regrow the damaged cartilage in that area. ) .!!
I am having this done next month.

REPLY

Hi gravey. from Georgia in Australia . Yes I have at present an S 1 to 4 Sacroiliac joint degeneration. Wow pain is 10/10 at times. Had all the scans you named, also. But the "blocking injections" to the S1, 2,3,4 nerves told then where it was exactly. These are rather mild injections done in outpatient surgery in your lower back under mild anesthetic. Then you go home and they ask you to keep a diary. How did it feel after one hour, two hours etc. If they blocked the "hurting nerve" they can tell from this.
So I was offered three solutions.
So I was offered PRP, RFA or FUSION. PRP (50% chance of success, newish treatment ) is an injection of platelets to see if it will heal the damaged cartilage etc. RFA is Radio frequency Ablation where they kill the affected nerve with heat. And FUSION is where they fuse the joint so it will not move and cause pain.
I selected RFA which I will have shortly. As soon as C-virus is lifted.

REPLY

Hi @australia. I know what you mean. I have degeneration that has caused a scoliosis and my T-4,5 and S1 has stenosis. I did have the Ablation, but it only helped for about a week or 2. I am now going to have a fusion from T-10 to my pelvis. It's a big surgery, but I am so ready and looking forward to it. Seems funny to look forward to a surgery like the one I'm having, but I'm hurting too much. I hope Your RFA works for you. It's a good choice. I'm still waiting for Mayo Clinic to do elective surgeries. The stupid Covid-19 really messed things up. I live in Iowa and Mayo is in Rochester, Minnesota, so it's a 3 hr and 30 minute drive, but it's worth it. Best luck and let me know how you come out. If I don't respond you know I'm recovering from my surgery. Take care of yourself!

REPLY
Please login or register to post a reply.