I was diagnosed with Tethered Cord Syndrone (Occult). I was born with Spina Bifida Occulta. The doctor that delivered me saw the signs of something he was not knowledgeable about. He told my mom it would resolve itself. This was 1950. I had symptoms as a child but my parents had no clue. I was limited in the sports I was able to play. Ended up taking swimming. Fast forward to 2016, had successful surgery. Was just diagnosed two weeks ago with re-tethering! So at age 73, I am looking at another surgery because I have symptoms that are worsening.

@vivekchandrashekaru4965

4 ай бұрын

Hi I too am diagnosed with thethered cord but detethering surgery was performed around 10 yrs ago ,later after 10 yrs I found out that the spinal cord has retethered with worsening symptoms like difficulty in walking, what kind of worsening symptoms did you notice which made you to look at another surgery.

My Post Traumatic Tethered Cord Syndrome was caused by a Lysis of Adhesions procedure that went wrong.

Wow, i'm glad I found this video. I'm 43 diagnosed just over a year ago, Dr. said tethered cord & mild spina bifida. I lived a normal functioning life up to 2018, I got really sick, got better, then later that year started walking like a duck, that's what it felt like. Loss of sensation in my feet, progressed to my ankles, then my legs over time, incontinence (both), diapers, had to start using a walker in 2020, had to upgrade to one with wheels & bench. Chronic uti's, i've been on antibiotics more than not since oct? last year. The leg pain is pretty bad, some days are worse than others. No back pain. Neurologist referred me to neurosurgeon who was more than happy to do the surgery. Date set, I started digging for all the info I could because it worried me, i'm not an infant or a child , my body is mature & what he said was he was just going to make a small incision snip that fatty tissue & my cord would just shoot back up where it was supposed to be. Hospital stay, rehab ect. I talked to him before the pre-op thing again on the ph. and I asked him if he'd ever done one & he said he does surgeries like this all the time. After pulling tooth & nail he admitted he had never done this particular surgery...nice smh. So we put it on hold, which come July it's a no go after seeing this. My urologist is going to try botox, hopefully that works, have to get cardiology cleared first and be uti free for a min ugh. Some days I almost feel like there might still be hope to walk without the walker. It's def not graceful but I can make it 8/10 steps without the walker, but those days are getting fewer & farther between. Same with pain, some days aren't too bad, others are bad. I'm on 400 Gabapentin was 3x day, he just upped it to 4 because some days have been really rough lately. I don't understand how it all fluctuates like that. I'm in Ohio, disability just got approved, so if you need a guinea pig i'm more than game! Sorry for the novel.

@Wherewordsend

Жыл бұрын

I’m 28 just diagnosed and this is exactly how I feel and what I’m going through 🥺

@amandamarohl9034

Жыл бұрын

@@Wherewordsend i'm so sorry :( wish we could give each other advice lol. Crazy trying to adjust too & not even just physically...the mental aspect for everything! Sucks most of the time, but have you sat back yet and looked at the bigger picture? I'm past the grieving stage. Took a yr & half of working on myself, my relationships with family and friends. I turned back to God, i'd been gone for many years...straightened up & here I am. I don't know where you are in dealing with it, but it's "okay" once your here. It's freeing. I wish the best for you.💙..HANG IN THERE!!!💪✌🙂

These patients should be examined for tarlov cyst disease as well...symptoms can be similar and accompany each other.CSF pressure disregulation...what are the possibilities and consequences?

A great educational session!!

So much great information. Let’s me have a huge amount of questions for my new doctor after I became much worse after my surgery.

Great presentation! Loved the insights of both spine and Peds. NS on this complex topic

As a physician who has Recurrent TCS... Thank you.

@w6467

Жыл бұрын

And thanks for passing to KZread!

I was very impressed with this conference call. As a patient, who should I contact to have an adult tethered cord workup done with your department? I have current imaging. Have not had urodynamics study yet.

@PinkPanther70

Жыл бұрын

I have TC and I've studied the topic for a long time. I'm also a RN. You ask who you should contact. If you have bladder symptoms (frequent uti's or a feeling of retaining urine or incontinence) I think it would be wise to talk to a urologist. And then find a neurosurgeon who knows TC and it's symptoms. There are fb groups on TC. People can tell you who they saw or where they had surgery. Good luck.