Chronic pain buttocks region

Hi, I was wondering if anyone had any insight or experience with the pain i am feeling.
Years ago I had posted about my problem, but not much has changed since then.

I am currently 18 years old and have suffered from this pain for 4-5 years.
In this time, i have been through 5 physiotherapists and two Rheumatologists, all of which have been baffled by the problem.
Most recently a spinal specialist who had involvement in physiotherapy had ruled out piriformis syndrome, and any inflammation or swelling in the region (as shown by scans) Which therefore have left him and the rest of his team, baffled as to what it could be.
He understood the hassle as this has been years of being referred and passed from doctor to doctor with no avail, which can be quite disheartening at times as this pain is almost daily and has been for years.

Symtpoms of the pain:
-A dull ache in the buttocks region, more central can be either side
(Piriformis syndrome, si joint disfuction and inflammation have all been ruled out by examination, the si joint dysfunction through the test where they apply pressure when lying down at the hips and whether you feel any pain)
-Can last for multiple hours, most cases have to wait for it to fade away which it does after a number of hours, normally to usually come back the next day
-I have noticed over the years if i have had the pain for hours and it starts to settle, it WONT come back for a minimum of 10 hours, as in i am ‘safe’ of the pain for a short while after
-Symtoms not really helped by prescription ibuprofen etc, the pain almost feels too concentrated

NOTE: Can feel reasonably strong activation of the pain when doing an isometric exercise (Where you lie on your back, put your knees in the air and put your hand on your kneecap, and push into your hand with your knee)

Never any ‘sharp’ pain, just a predictable constant ache for a long period of time.
Interestingly if i am bending over and i nod my head i almost feel a ‘tug’ in the pain region in the buttocks, as if the movement of my head is pulling on the pain location/activating it.
Lying down only sometimes helps as it can sometimes calm the pain down, but i would have to lie down for a while before getting up otherwise the pain would come back (almost like it needs a while to settle)

Apologies for the legibility of this post as I am just trying to get as much information as I can out, and see if anyone has any insight.
Thanks
Jack

Hi Jack:
“Tethered spinal cord syndrome” comes to my mind when reading your post and narrative.

Thethered spinal cord syndrome is most often associated with Spina bifida but can also present in otherwise normal people with patent fetal neural tube development. In these cases, symptoms of tethered spinal
Cord often first appear during adolescence where rapid growth places stretching tension on the lumbar and sacral spinal nerves.

Symptoms include localized low back pain and radiating pain to the buttocks, hips, and groin. Bowel and bladder dysfunction may be present as anal/urinate voluntary sphincters are innervated by the cauda equina.

Your age span (onset at age 14 to current age of 18) and presenting symptom profile certainly do give suspicion of tethered spinal cord syndrome. Heightened symptoms when you flex your head also give credibility to tethered spinal syndrome. An MRI or dye study of the lower thoracic/lumbar spine and cauda equina would provide informative information.
Karen

Jack:
A routine MRI with you lying supine in the scanner could easily not detect tethering of the lower spinal cord and cauda equina. Tethering is usually caused by errant soft tissue that anchors/attaches along a nerve fiber. Symptoms arise when there is tension/stretch to the anchoring tissue, which tightens around the nerve causing intermittent impulse transmission.

Tethered spinal cord is most often seen innindividuals with spina bifida (incomplete closure of the neural tube during fetal development) but is also seen in individuals without spina bifida.

You would want to meet with a neurosurgeon who has experience with spina bifida or other cauda equina based injuries. Your age (adolescent/young adult) coincides with heightened symatology, where growth spurts place greater tension on the lower lumbar nerve roots/cauda equina.

Bowel and bladder symptoms can accompany as these nerve roots innervate the voluntary anal and urinary sphincters. Example: Bladder leaking or fecal leaking.

An injected dye study with dynamic positioning that places stretch tension on the cauda equina would be informative.

More and more, it is incumbent on the patient to present to the physician a list of possible diagnoses for assessment. I would specifically bring up tethered spinal cord (lumbar/cauda equina) to your provider. You can research and read reputable internet sites to gain knowledge about tethered spinal cord.
Karen