very concerned!! please help

[klynn005]

Hello i am 21 years old and I was diagnosed with chiari 6 years ago. I recently had a sleep study done (I go Thursday to find out results) but during my daytime sleep study the nurse said that she was told I also had seizures. I have never been diagnosed with seizures, but I was wondering if the nurse during my night time sleep study had seen something but wasn't able to tell me. I've been freaking out ever since. I have all the symptoms after waking up of nocturnal seizures. I have an appoimtment with a NS sept. 30th to discuss surgery. I just need someone to talk to that understands what's going on but I guess I was just wondering if anyone else has had this happen to them.

[selmaS]

  No worries....do let us know how your next Dr visit goes....good luck : )

[klynn005]

Thank you for all of this. I will most definitely bring up all of these things  during my appointment with my neurologist. Also I want to thank you for talking to me about this. It has helped more than you would know.

[selmaS]

  Well do push for them to rule those out, as they can affect how you feel and heal both b4 and after surgery.....it is very important to know should surgery be an option for you.

Yes, it is hard on our families and friends and especially our partners....my hubby did better with things after he started to do his own research....I could not get him to read the info I brought up.....but he did some research on his own and he was great when we went to Dr visits he had questions and came up with scenario's I never would have...Men by nature want to protect us....this is something they can not protect us from....they have to watch and that is very hard and they feel helpless and at times feel they failed us.....all we can do is let them know we feel protected and know how much their just being there helps us.....just one way to help them thru this.

[klynn005]

No my neurologist never ruled any of that stuff out. And I'm trying to stay positive. My boyfriend tries to help me but I know its hard on him as well.

[selmaS]

  Did your Drs rue out Syringomyelia, ICP, POTS, CCI, tethered cord, and Ehlers-Danlos?

  It is very important that ALL of these as well as lymes, lupus and MS were ruled out...

Depression is something we all deal with on this journey as it seems to be a never ending path we are on....but try to fight to keep from falling too deep into that pit...as it can slow your chances at feeling better....

  There are a few Chiari specialists in Ohio.....not sure where you went..or if you are close to the ones we have on our list.....

[klynn005]

Thank you for replying and I only have not been to this NS before and I do believe he is a chiari specialist. I have had multiple MRI's and a sleep study done. But none of the medication seems to be helping. I get dizzy very easily have a fullness in my ears almost 24 hours a day a the pressure is constant in my head and I have a migraine from the time I wake up to the time I'm finally able to go to sleep. The neurologist that I see is not a specialist and I am not aware of any close to where I live. I am getting more and more depressed everyday because I am 21 and should be living my life right now, but all I do is sleep and try to deal with my migraines that brings me to tears everyday.

[selmaS]

  Hi and welcome to the Chiari forum.

I saw you posted this same question twice, I decided to answer on this the new thread....

As for having seizures, we have had a few members get this DX both b4 and post op....and sleep apnea issues are also common among those with Chiari.

I believe the nurse should not have given any indications as to the results and could be why the other nurse did not do so.....keep in mind a nurse is not a Dr or able to give you that info as it is not part of their training or position.

Try to be patient to see what the Dr feels is going on.

I did not have the sleep study as my oxygen levels appeared fine.....so I did not have the full sleep study done....

Do you have an appointment with a true Chiari specialist or just a NS?

Have you been to this NS b4?

What other testing have you had? Were ALL related conditions ruled out?