Seizures/chiari relation and CSF flow question

[JessicaHensarling]

Okay people, talk to me about seizures and chiari. My 4 year old son had one last week, his pedi referred to it as a absence seizure. He checked out, stopped breathing and his eyes crossed and then rolled back. The whole thing only lasted a couple seconds but it was scary considering everything else neurolgoical going on with him these days. He is unable to chew on his left side anymore and I was trying to get a video of him chewing a piece of gum and coincidentally, he had the seizure in the process and I was able to get the whole thing on camera. What kind of seizures are commonly seen with chiari, if any?

I showed his pedi the video and he had me take him to the ER to be admitted and run some test. They did a 30 minute EEG and it came back abnormal and said he "may" have seizure tendencies. The neurologist there at the hospital came to see him right before they took him down for the MRI of his spine so she was unable to do a full exam on him, there was just time to briefly talk to me but said she was going to come back the next day. Well, his MRI showed no syrinx or tethered cord which they were considered about with his legs and toes issues but it did show he has minimal CSF flow and needs to be decompressed. I didn't consent to the neurosurgeon doing it there at the hospital we were at so we were discharged and the neurologist said her office will be contacting me to work my son in within the next week. But in the mean time, you guys know the drill... I am curious to hear what all you know to hold me over.

Also, what complications could arise from him having minimal CSF flow? I know syrinx form in the spinal cord but is that something that forms quickly or overtime? What other risks and symptoms come with an obstructed CSF flow? We are not sure how long he has had minimal flow because he was originally scanned in February when we found out that he has chiari and the neurosurgeon he saw at the time insisted that his symptoms were not related to chiari so she wouldn't bump up the MRI of his spine and CSF flow (we were originally scheduled to wait a month and half before all this happened last week). We have seen three neurosurgeons within that practice and they all sadly seem to be pretty clueless as to what chaiari actually is and the symptoms that come along with it. One of them even tried to tell my my son's neck pain was not related. The struggle is real you guys, I had no idea it was this complicated to find somebody that is actually knowledgeable about chiari. Thankfully we are already on the books to see an actual chiari specialist at the end of the month so hopefully my sweet boy can get some relief soon.

[selmaS]

  I was dealing with Drs that did not believe Chiari was an issue and it was in 2007.....so less was known and even less Drs with experience accessible to me in my area....I eventually went out of my area to find a Dr and that is when I got my CINE done.

Since I had the drop attacks I can only tell you what my daughter has told me and what my family said for other events I had....

When I was young  my family thought I had passed out...they said my eyes were open and I could hear what was being said but could not respond...it was very strange...I could hear the TV on so my thoughts were I fell asleep while watching TV....but I was not in the room with the TV so that was not possible...I did not see a Dr after that event...

When I had my event with my daughter...she too thought I just fell....then said she was talking to me and I was not responding...again my eyes were open but moving oddly....I do have  a clearer memory of this one since it was in "07,, we were on a street corner and looking for landmarks to find where we parked the car....I mentioned a few landmarks and then saw a crack in the sidewalk and waited for my daughter to pass so I could avoid the crack....next thing I knew I was mid fall and wondering why...but I could not react to stop the fall...it was like being awake in a sleeping body....I heard myself hit the pavement...and I thought I was going to be very dirty as I had on white pants....my daughter asked if I was ok...and I thought I replied...but she said I did not.....

Once I was able to reply I felt very nauseated....and my head hurt like crazy as well as my right knee and left ankle.....turned out I had a very sprained ankle and a torn meniscus in my right knee....

[JessicaHensarling]

I can send you the video if you want. Do you know what a "drop attack" looks like? The pause in CSF flow would make sense for him since it is minimized right now. I have noticed that he sometimes takes a bit to respond and I can be sitting right in front of him and it is like he either doesn't hear me (impossible) or is ignoring me. I will sometimes have to repeat my attempts to get his attention and then he finally responds which he never did before lately. Oh and another thing I forgot to mention is that he had a little drizzle of pee in his pants after it happened. I have been noticing that he has been having drizzling accidents every now and then for the past couple of weeks and he can't explain what happened. I will see him with new pants and I ask what happened but he can't tell me what or when it happened, just that he had a little pee in his pants. Which concerns me that he has been having these seizures or whatever it is for the past couple of weeks. This was never ever a problem for him, he has been potty trained for over a year with no accidents, ever. I'm going to do some reading about the related drop attacks. I think I briefly read about them before but didn't really do much research on them specifically.

Really?! I cannot believe they made you wait that long to check the flow. Is that the normal process of them checking? I would assume that they would want to check somebody's CSF flow as soon as possible once chiari is confirmed.

[selmaS]

  Hi...I will try to get each of your questions but if I miss one just repeat it again in this thread.....

Seizures....they can happen...sometimes they are short lived...and sometimes the person with Chiari may develop epilepsy .....some b4 while others post op.

It is not something everyone with Chiari will have.

I also wonder if it was an actual seizure or what Drs ( Chiari Drs) refer to as a drop attack...when CSF flow is stopped for a moment, everything shuts off like a light switch was flicked off then back on...but it may take a while for the person having this episode to react or respond.

I know about these as I had them....it can appear the person passed out or had some other medical event....so, do not be too quick to think it is an actual seizure...have more testing done to rule it out.

A syrinx is just as strange as Chiari....as for how they grow it can change person to person and even within one person....it can grow very slowly and then for no reason have a rapid onset of growth....so, with out constant monitoring there is no way to really know....

From the time my Chiari was found and I had a CINE MRI it was over a yr, so time wise you are doing better then I did....