Went to Iowa University today and.....

[Southpaws3]

I saw Dr Menezes today he said the chiari was affecting my gag refelx in terms  of i dont have one , also my balance the positional sleep apnea and choking so he would do the surgery but.... The memory problems and cognitive problems were not related and i have to see a behavorial and cognitive psychologist before the surgery to make sure those problems dont get worse. I just wanted him to say yes u have chiari dont do this this and this and you will be ok .. So I am surprised  but understand what he meant after he tried to gag me and it didnt work plus my balance and refelxes are a complete mess i do believe my memory problems are related also but even though i from oklahoma we will drive back to see those specialists he wants me to see , he wants ro hear that the surgery willcnot make my orher problems worse is what i understood him saying .. Any thoughts?

[selmaS]

  There are several ways...some  can be thru questions, then the Beighton scale and depending on which type they do a skin biopsy.

My Chiari Drs did it...I wasn't that aware of it then...had heard it could be a factor but from what I read didn't think I had it.....I was wrong !

It is very important to rule this out b4 surgery is considered.

[Southpaws3]

How do they test for this and can we request it ?

[selmaS]

  EDS = Ehlers-Danlos Syndrome...it is a connective tissue disorder some specialists believe is the reason many if not all of us have Chiari....it can also be the reason for surgical failure.

Many with EDS have issues with meds....sometimes they work and other times we feel allergic to them or they have no effect at all....

Things like the anesthesia used t the Dentist to numb your gums may take 5 injections b4 you begin to get numb......

We can also experience rejection to any foreign matter such as a dura patch made from anything other then our own tissue....rejection of a patch can lead to a CSF leak, infection...and even overproduction of CSF resulting in mimicking   ICP.

There are many other possible scenarios.... but it is important to know if we have EDS B4 surgery.

[Southpaws3]

Not  familiar with eds  ?

[selmaS]

  Was EDS ruled out as it can cause cognitive issues as well.....??

[selmaS]

  How long since your surgery? I didn't get it back right away..in fact I forgot to check it for some time.....but I do have it back now....

[KerriC1]

Selma, I still don't have my gag reflex back. Just though nerve damage maybe? Or some residual issues. Who knows at this point!

[selmaS]

  Hi...I  had lost my gag reflex too...but I have it back post op.....so, I know it was Chiari related.

I also feel my memory and cognitive issues are better too and I have not been treated for anything but Chiari.....so, not sure I understand that....but it is one way to document what is going on.....

[KerriC1]

No problem at all!

[Southpaws3]

Thanks kerri for your input i sent a message for more detailvon the surgery if thats ok :) have a good one :)

[KerriC1]

It's so strange,, because I am 3 months post op and having issues and I was gonna call dr menezes tomorrow to see if he could evaluate me and perhaps give some insight. I wasn't sure if he was still seeing patients, but you answered that question for me!

I personally think however that the memory issues are connected, only from a patients perspective, since I'm clearly not a dr! Maybe he just wants to be extra thorough? I know so many of us suffer memory and thinking difficulties so it seems reasonable to me!