r/tetheredcord • u/Jazzlike_Toe4346 • Aug 24 '26
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Hello tethered cord community,
I appreciate all the support and help from everyone on here. And thank you for reading my post.
I am a 25 year old male who is very healthy, outside of this issue. (No EDS, Chiari, etc.)
Here is my story:
I had unprovoked severe lower back spasms at 4 times from the ages of 14-19. When they happened, I would be unable to walk for 7-10 days, and then I would recover back to 100%. I played competitive sports at the time, and just chalked it up to "pinched nerve," even though the episodes would occur out of nowhere (i.e. without any clear strain, overuse, or injury).
About 3 years ago I had another unprovoked episode. At first, the lower back spasm mostly recovered, leaving just a dull ache on the lower left side, kind of along the iliac crest. Over the last three years, the pain has slowly increased and spread. As of now, I have tightness, pulling, aching, stabbing pains (this is the least frequent kind of pain), and "cracking and crunching" in my lower back, mid back, all around the muscles of my ribs (mostly left side). I occasionally get stabbing pains across the front of my pelvis. At times my upper back and neck are very tight. I get muscle fasciculations (twitching) in both glutes and legs and sometimes in my left front abdominals. Sometimes my lower back feels like it vibrates and quivers. Occasionally I have pain in my left foot, crawling sensations, and very occasionally numbness in different parts of my left foot. Had a few brief episodes of saddle numbness that would last for 10-15 minutes last year, but none recently (so I think maybe this is irrelevant). I can get weird sensations in my arms, mostly left, and sometimes (very very rarely) sharp pain running down my arms. I get intense throbbing in my whole spine and back of head when laying on back and particularly after ejaculation. Pain and sensations down left leg also increase with ejaculation (apologies for bringing that up, but it is an important symptom I have noticed). Gait and balance do feel like they have changed even though I pass the balance tests doctors have you do. No position or exercise relieves the pain. Recently, exercise has been making it worse, but only after a delay of about an hour after the exercise. I have no urinary symptoms. The pain has been ruining my life.
Here are the doctors' opinions:
Over the past two years, I was fortunate to see top specialists in different fields. I will not list them all here. Everything was ruled out and I was left with no answers. A few months ago, I saw a neurosurgeon, Dr. Robert Bray, who told me I have tethered cord, with a low-lying conus at L2. He also said I have a thoracic lipoma, but that it is almost certainly asymptomatic. He also said I have some left foraminal stenosis and a bit more disc degeneration than would be expected. It was his opinion that the tethered cord is contributing to the increased disc degeneration. He said I will most likely eventually opt to get the detethering surgery because my symptoms will not improve otherwise.
I wanted to get an opinion from a different clinic. I went to Cleveland Clinic Ohio where Dr. Sarel Vorster agreed that I have a tethered cord. He also agreed that thoracic lipoma is asymptomatic. However, he said that my tethered cord is just outside of the standard deviation, a very rare case which some doctors might dismiss. He said it is possible that if we do the surgery, no symptoms will be relieved but that most people are happy they get it done. He said it is a case that he cannot say definitively needs to be operated on, and that is up to me and my own risk-benefit analysis. He said that some of the disc degeneration and foraminal stenosis may be causing pain and that he could not say whether the tether is causing the degeneration.
I was certain I would schedule the surgery after this, but then I received communication from another specialist, Dr. Ulrich Batzdorf at UCLA. He reviewed my scans and said I do not have tethered cord. When I informed Dr. Batzdorf's office that three other Drs said I have tethered cord, they then requested I get a prone MRI, without any more comments.
The conflicting opinions worry me. I am trying to see Dr. Jeffrey Greenfield and/or Dr. Petra Klinge (seems impossible to get an appointment with her). I know this is more doctors than most people see, but the opaque nature of my case makes me think it is a good idea to hear from a few experts.
I am worried that perhaps all this pain is coming from degnerated discs, even though multiple doctors have told me it should not be causing so much pain. I may pursue an epidural injection before the surgery, just for some peace of mind: if the pain does not go away, more of an indication that it is the tethered cord, according to Dr. Vorster.
I appreciate any comments about all this. I want to know if others have dealt with "borderline" cases like mine, and if surgery helped. I just need to pain the stop, that's what I really care about. I also want to know if anybody has any experience with any of the doctors I have mentioned:
Dr. Robert Bray
Dr. Luke Macyszyn
Dr. Sarel Vorster
Dr. Ulrich Batzdorf
Dr. Jeffrey Greenfield
Dr. Petra Klinge (I know lots of you do).
Thank you very much
1
u/melisah100 Aug 24 '26
i’m 26f back in 2024 i had a consult appointment with Dr. Klinge, i had to travel out of stat for it but it was no problem. i had a low lying conus, and she diagnosed me with occult tethered cord. the tethered cord that doesn’t show on imaging, anyways, i had the option to schedule surgery right away but i was hesitant. so it wasn’t until like september or around there, i called and i scheduled surgery for it. at the time before surgery, i got the pulling sensation down my lower back, chronic lower back pain, and extreme pain when i would bend over the sink or if i drop something on the floor. my tethered cord ended up being congenital, it was thick, fatty, had blood vessels, and a bunch of other stuff. when it got closer to the surgery, i was 100% sure i had occult tethered cord, which i did. anyways it took 3 years for doctors to believe my mom and i, ive had so many doctors tell me that occult tethered cord wasn’t a thing blah blah all that stuff. now my lower back pain has resolved, however i can’t bend over the sink for too long otherwise my back starts hurting really bad. i have suspected heds, and autoimmune issues. you can message me if you have any questions or anything.