Can I request a TC surgery with a negative MRI?

[ImWonderWoman]

So I have CM1 and the headaches are terrible. I have terrible weakness and nerve pain in my whole body. And a hodge podge of other symptoms. Before going through with the decompression surgery is it possible to request a surgery so that my filum terminal be cut? I have been researching that many filums are not elastic like they should be and patients are getting relief from that surgery. Any thoughts? My full spine mri showed no syrinx or visible TC. I have a 5mm herniation.

[lasel22]

Hello, I had pfd surgery a year ago and due to some remaining symptoms my doctor does think I have occult tethered cord, although not bad enough for surgery.  I did ask him about tethered cord before my pfd surgery and he did point out that the pfd would be the first surgery to have, especially with a true chiari where the size and shape of the skull is too small.  Sometimes, the size of the skull is normal but the tethered cord is pulling the herniation down.  In that case releasing the cord allows the herniation to go back up, but not if you have a true chiari and there is no room in your skull. At least that is how I understand it.

[selmaS]

  Hi and welcome to the Chiari forum.....

Here in this forum TC refers to tethered cord syndrome  which is a related condition to Chiari...

[CynthiaCherise]

Hello, I was also born with Treacher Collins Syndrome which is commonly referred to as TC. We have a huge online community for personal connections and medical communications on Facebook if you are interested. I am also an advocate for the cause of craniofacial differences. We also have many events throughout the year which are amazing to meet others you can relate to. If you ever need anything please contact me directly. You can also find me via Google "Cynthia Murphy Craniofacial Awareness Advocate". I hope you are having a fabulous week thus far!

Cynthia Murphy

[selmaS]

  Hi and welcome to the Chiari forum.

I do have TC and it shows on my MRI and it was considered that I have the release...BUT the Drs decided I would benefit more from the decompression surgery and as I understand it, the PFD is easier to recover from then the release....I had my PFD in '09 and have yet to go in for the release as the decompression helped with most of my symptoms.

If you have TC occulta...hidden TC.....then after having the decompression (PFD) then it would become apparent 6 weeks to 6 months post op...if the release would benefit you.

Most medical boards and INS companies do not consider the release a beneficial surgery and makes it even more difficult to get approval for it....

Do you have bowel or bladder issues,, low back pain, leg issues? Any reason you feel you might have TC and that surgery would be the way to go?