No gag reflex again....

[KerriC1]

It took over 2 years for my gag reflex to return after decompression. I never got any total complete relief from suregrry but within the last 6 months or so have been going downhill.

Aside from the daily headaches, the migraines have been intense and continuous. Yesterday I had what I call a chiari fit where it looks as though I’m having a seizure but I’m not. Happened all the time before surgery and this was the first time since. For these reasons I decided to check my gag reflex today and it’s completley gone again....

My MRI is Wednesday so hopefully I’ll know something after that

Anyone heard of itcoming back then going away again?

[selmaS]

Hi Kerri...I know Chiari symptoms can cycle...come and go....and surgery does not get rid of symptoms, it is meant to restore CSF flow and slow progression.

It is possible you have scar tissue or something causing another CSF flow.

I don't recall the aspects of your surgery or related conditions....but it could be that too.....

Chiari does not go away, surgery doesn't fix it....and sadly it didn't help you as much as you would have wanted....not everyone is.....and I am not sure of anyone that is completely symptom free post op or years later....for me, I am better then I was before surgery and now better then a few years post op...BUT I still have symptoms and issues....I never got behind a wheel of a car again....I just can't.

I am so sorry you are doing so poorly and I hope you get answers with the MRI.....remember to get copies of it and the report.....and keep us posted here.

Prayers sent out to you for answers and relief.

[KerriC1]

Thank you Selma. I had decompression 3 years ago with duraplasty. I have EDS and a bovine patch (NS knew but gave the bovine anyway). Since been diagnosed with high ICP but this just seems to chiari familiar..... and not a road I wanted to go down again

I was supposed to have both brain and cervical MRI tomorrow but my ins denied the cervical at this time and depending on what the brain said they’d do the cervical one later. But trust me after 15 years of undiagnosed chiari I’ve kearned to get copies of all of it. Mine was written on the first MRI I had so many years ago and was never told. Lesson harshly learned there!

I’ll deff keep you posted! Thanks again

[selmaS]

So, this could be due to the patch......

[KerriC1]

Had the MRI and it said mostly normal but the metallic mesh obscures the nearby structures. Who knows what’s going on at this point.

I had an episode a few nights ago where I was dozed off and suddenly awoken being unable to breathe or swallow. Scared the life out of me

Hopefully the new NS will have an answer. Selma, I’ve worried about that stupid patch since day 1......

[selmaS]

Hmmm well more prayers your way....the patches are one place to look when there are issues....I pray the new Dr is able to clearly see what your issues are.