I'm still lurking around here!

[Mazie1209]

Hello! Just thought I would check in and update! I actually read posts everyday, but dont reply much since I have not had surgery!
Quick background for those who dont remember, or are new!  I have chairi (12mm herniation) and a wide syrinx. BUT I am an lucky, I feel pretty good my pain is managed by meds, and tingling arms/fingers dont bother me! I have seen three ns 2 of the 3 say I should have surgery because of my syrinx (I'm hyper reflexive, so they said there is nerve damage) the third ns said he is slightly uncomfortable with me not having surgery, and thinks I should have it, but totally understands given I feel pretty good!

[Mazie1209]

I def. Know and understand what ur saying Selma, and you very well might be right, I believe one of my ns said the same thing about lack of pain isn't always good. They say I have some nerve damage because I'm hyper reflexive, and have minor nystagamus. Pretty much all three think I should have surgery because of my darned syrinx, it may not be long, but is pretty wide in their opinion, and of course I have blocked csf flow!  I ponder surgery all the time!  Thank you for all ur thoughts and opinions, I truly appreciate them alot!!
Mazie :o)

[selmaS]

  All I will say is I am not sure ur pain is controlled if u have nerve damage, it may be u can not feel it...and u did say the drs said u had nerve damage....and that is y they feel u should have surgery....as it can lead to paralysis.Not having pain is not always a good thing....and surgery is no fun either and not always a solution...but, many times we can not avoid it either.

Again, this is ur choice, but u may want to talk to another chiari specialist that may be able to explain that to u in more detail.

  My only concern is u may not have all the right info, or mayb I don't....

[linnielou232]

I understand completely about your decision, you will know when it is time.  I am glad you stopped by.  This forum was a life safer for me even before having surgery.  It's nice to talk to people who understand what are days are like.  Wish you the best in your decision.
Linda :)

[Mazie1209]

Thanks Selma! :) I do feel bad because so many are, in so much pain, and struggling for a diagnosis and someone to do surgery, and I dont have those issues, my pain is controlled, and I have 3 ns who will and think I should have surgery! I'm kinda the "odd" one here! :o) I will try to post more! I enjoy this forum :o) Dont worry (anyone) about trying to change my mind, I welcome thoughts & opinions! :)
Mazie :)

[selmaS]

  HI Mazie...I remember u....and I know this is a personal choice and will not try to change ur mind...lol...

We all have to make these decisions as to what is best for us.

I am glad u r still around and reading the threads....just know if u feel the need to vent...we have our Monday rant thread...or if u have a good day u want to share...Tuesdays Treasures...etc...

  Just bcuz u have not had surgery does not mean u can not use this forum and post...lol...but I am glad u r still reading : )

[Mazie1209]

Oops, posted too soon! Anyhow, thats where im still at...still dont want to have surgery, although  at the same time, worrying that may be the wrong choice...the 3rd ns said, I may regret it :(. (my mri pics are on my profile!)
Hope everyone is having a pain free day! I wear purple and pray for those in surgery and always reading your posts!,:)
Mazie :)