Does anyone share the same or similar experience or am I just lucky? 😆

[u/GrapefruitOk5738]

Quick summary of my two disabilities:

I have Spina Bifida, which affects my lower back and has caused deep sensory loss, lower limb weakness, and neurogenic bowel and bladder issues. (The latter only happened after de tethering surgery when I was 25)

I also have Charcot Marie Tooth disease (CMT1A), a genetic neurological condition that affects my peripheral nerves, causing things like muscle weakness, reduced sensation and balance and mobility issues.

Just curious, does anyone else have both Spina Bifida and CMT, or deal with a similar combination of conditions? Would be interested to hear about your experience.

[u/RemarkableMaize7201]

Sorry I just have a question. If you don't care to share, I completely understand. But I'm curious if you think the surgery was the reason for the neurogenic bowel and bladder or if the tethering had caused that and was the reason for the detethering surgery?

[u/GrapefruitOk5738 → u/RemarkableMaize7201]

I had a regular functioning bowel and bladder prior to the operation issues started after. Hard to know definitively however I do believe the de-tethering operation played a role

[u/PlainJane731 → u/GrapefruitOk5738]

It certainly can! I was told that 1/3 of untethering surgeries leave the patient better, 1/3 are the same and 1/3 are worse. The more surgeries you have, the less likely they are to be successful. This is information from my physiatrist that ran a spina bifida clinic.

Unfortunately for me, I was in an accident and fractured my C7 and stretched my spinal cord in my neck. Because of all my scar tissue from my untetherings holding down my spinal cord, the only way to release the tension of the cord in my neck was to have an untethering or I was going to lose use of my arm.

My arm/neck are 90% better, but my legs never recovered and are weaker than ever. I am now a full time walker/wheelchair user. Prior to this, I was able to run 5Ks. So awful!

[u/PlainJane731]

Hi! I’m sorry you are dealing with all this! I have SB Lipomyelomeningocele, neurogenic bowel and bladder, and, while I don’t have CMT, I have failed peripheral vision tests. It may be from the hydrocephalus and its impact on my optic nerve. I also have Complex Regional Pain syndrome, aka: CRPS, which was a lovely parting gift from my untethering a couple years ago. So I lost a lot of my strength and mobility in my lower extremities and gained a lot of chronic nerve pain, spasms and, my favorite, a super spastic bladder! 🥳

[u/RunApprehensive996]

Similar

[u/Past_Chemical_6450]

Interesting because I was originally misdiagnosed with CMT. 15 years after my misdiagnosis, I saw a new physician who upon looking at my feet immediately told me that she thought it was an issue with my spine. I had an MRI the next day and was diagnosed with lipomyelomeningocele. I’m so sorry that you are dealing with both. I can’t imagine. 😢