Chiari and Seizures

[JameeWM]

Hi!

My 12 yr old daughter had a grand mal seizure three weeks ago.  Her EEG resulted in a diagnosis of Primary Generalized Epilepsy, and her second MRI resulted in a diagnosis of a 10mm (1cm) Chiari I Malformation.  She is on Keppra for the Epilepsy, and I am unsure whether there is a correlation b/w the Chiari and her seizure.  One well known Ped Neurologist in town defines Epilepsy as: A chronic neurological condition characterized by recurrent seizures that are caused by abnormal cerebral nerve cell activity.
If this is the case, it seems reasonable to think that the Chiari could be contributing to the seizure.  Given her braces, we were unable to conduct a "flow study" of her cerebrospinal fluid, so we are unsure whether this flow is being hindered.  
We want to make sure we are not treating her for Epilepsy when she, in fact, should really only be treated for her Chiari.  Is there a connection b/w her seizures and her Chiari?

[net72]

please be informed that it may be frustrating, but trust yourself!!! Be prepared for the Neurosurgeon to say its a neurology problem if you do not have the surgery, and then when you go to Neurology, they say its a neurosurgical issue!! ugh!! right? i know, its frustrating but i do believe that SOMEONE in the physician field will take heart on the matter and choose to specialize in this one issue adn we can all breath alittle easier.  hang in there and keep going until comeone listens and trusts your instincts about your own body.. tell the dr. if you are gonnna trist him, he has t trust you....unfortunately, in the dr.s defense, theres a lot of "other" pp out there that oversnesationalize, and even make things up for attention, and or drugs...u need to find the one who knows this is not true about you!!! good luck, and dont give up...youre strong!!!  no one even knows how much you put up with in a day just to get thru!!!

[net72]

i understand that not all chiari patients have seizures, however not all chiari patients have the same anatomy of symptoms...i stll firmly believe that this is the cause..  as far as tethered cord, it can be difficult to diagnose...it does not always show up on mri...i believe i have it, i have all the symptims, and my son has many too.  tightness in the back, too much sitting causes head and back pn, low flexibility, i myself even have times when it is difficult to have any force with myb urine stream, but it is not constant, so it gets ignored. honestly, since my son was diagnosed and began his journey with all of this, i gave up on my doctors, and trying to get them to understand or believe anything, and focused on my child only...as any mom would i believe.  The last time i went to one of them, he said "hmm, youre gait is off today"  proceeded to ask me q's, did his little 60 second neuro test, which by the way tells me nothing.. and when i asked that the symptoms i express be documented not only for me but for research purposes to help others, i was blown off...how do i know this??? i went and got my office notes from that day and it was uninformative, short, and even stated these ttwo words: "gate-normal"  when he verbally noted that it was not!!! ugh!! i only bring this to  mind because it sares me that my son will suffer the same fate...noe of my drs have bothered consulting with New York or other institutes that study chiari, and they NEED to!! when the surgeon i worked for had a patient with a rare condition, he did everything he could to research and learn about anything he could in order to  help his patient, and then if he could not, he found someone who could.  unfortunately, Drs like him are few and far between.  I saw another Dr., who said they treat chiari, and when i got there and told my story,  she told me i was her 1st chiari pt.  i thought, maybe this will be a good thing, she'll get excited to research and learn how best to help her chiari patient!! so i gave it a chance, and when i went back for a recheck, there was no new knowledge or suggestions to help other thatn things ive already tried and did not wish to revisit.   so then of ocurse, to cover the butt, was basically written off as non-compliant because i did not wish to go backward with things i already tried and did not work!!!  i do not wish this on anyone, and if i had the oney to go back to go back to school, i'd love to become a research specialist and advocate for chiari, as i seem to know a heck of alot more than the dr.s do about what it can do to a person,  granted not ALL, and help those who are in the same  position..i'd love to find a neuro brave enough to let his or her ego go enough to take me on as a research personell on the subject,  problem is, they'd have to be willing to take me seriously,trust my reseach, and respect wht i have to say in order to actually help someone else, or at least enlighten the dr. himself on their endeavors. its a litlle something called thinking outside the box, and it has spared many ppl pain and heartache, and even saved lives .  i will hope to find such a neuro in my area. i'd love to use my medical background, and how in tuned i am with my own body to help the de help others. i see a huge problem with the fact that if they dont know enough about it, youre either crazy, or you get passed off to someone else who knows even less because noone wants the responsibility of owning what they dont know...dont they know that when they dont know,  document, document, document until you do... it will some in handy when the research catches up!!  

I will continue on my search to find out about my son possibly having tethered cord, and pray they can think outside the box enough to care enough to listen. and then use their vast knowlege to decifer the info and the possibility without jumping to conclusions.. ppl must be careful not to jump to the wrong conclusion just because they heard it somewhere.. be am aware of this, ( i am not one of those ppl),  but the hope is that all will be considered by the dr. and taken seriously.

The Dr out of Childrens Hospital in Detroit is Steven Hamm..chief of pediatric neurosx.,[phone]. He is very compassionate, considerate, informative, and willing to listen and think outside the box. and he's not one of those who's just in a hurry to slice and dice.. so if he says he recommends it..i for one, would trust it..  heck he even finished half my sentences when we'd talk about my son and even myself and our symptoms...which ws a first. so all i can say is thank God for him and for finding him for my son...and me??? ..as long as my son is o.k.  i can wait...hopefully an adult Dr. will get on their horse about the vast differnces in every chiari patient and specialize in it...until then....l
i walk no matter how much it hurts...gave up jogging!!lol!!!
live your life the best you can, dont make excuses, stay strong, and use your arms, legs, mind and body as long as the good Lord gives it to you...even if it hurts...God will provide, and a Dr. will soon some to listen when you need it most.
My godchild has C.P. and has never walked or talked a day in her life..and i remember this every time im upset about the days i cant make it around the block when i go out for a 3 mile walk.  and on the other days...

[selmaS]

  Hi and welcome to the Chiari forum.

WOW....u r very well informed working in the field u do....and I appreciate all that u have shared with us.

I pray ur son out grows the seizures....and I wonder, was he checked for tethered cord*? Since his seizures happen with growth spurts, I automatically go to TC*.

  Please add ur son's NS to our list if his info is not on it.....or PM me the info and I will see that it is added.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

     "selma"

[selmaS]

  Hi and welcome to the Chiari forum.

Seizures r not common with everyone with chiari, but do seem to be a bit more prevalent in children. Although adults have developed epilepsy post op....and there is no reason or rhyme to who or when or even if this may occur.

  The problem is we get info from Drs that really do not have updated info on how chiari can and does affect us.

  I pray u get answers, but be advised not all NS's r well informed on chiari...so, do research drs to find the right one for u...we do have a list of drs,  it is not meant as a referral, only a means to help u start ur research.
There is a list for US Drs and Drs in Canada.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

    "selma"

[net72]

i ;have chiari i--7mm , took  them 3 yrs to find...too busy trying to fit everything into their narrow little box of things they can drug you for.  they were even trying to give me injections for m.s.  just cuz they 'thought i was getting it'.. they like to make their money..i refused this becuz i knew they were wrong and trusted my body and what it was telling me..i didnt even have lesions on my brain? why so in a hurry to treat whats not there? any how, i refused to take the injections, and then i was written off as non compliant, and my symptoms were written off as subjective because they werent SEEING them.. anyhow, when my son was diagnosed in 09', and only by my insistance that HIS symptoms were from the chiari demanding an MRI while all the drs thought i was nuts....I WAS RIGHT!!!!!  he also had seizures after his chiari symptoms appeared, the szrs followed,  and only during GROWTH SPURTS...which doesnt take a rocket scientist to figure that growing will pull and directly affect the brain stem!!! hello doctors? are you out there??? anyhow,  i have been in radiology for 20 years, orthopedic specialty for 15, and i can assure you one thing...an MRI is a study done in a recumbant(laying down) position, and CANNOT be accurate with its flow analysis all the time.. due to lack of gravity and position, which as we all know the majority of the time, we are standing or sitting, or moving etc.  the technology just isnt there yet..we are guinea pigs...hold out hope and TRUST YOUR GUT..and as frustrating as it is,,,keep going till you find a dr that will open his little box of thinking ad take you seriously..your child needs you, and the one good thing is that Drs are a lot more serious about helping children,,thank god...strike while the iron is hot...or your child could find self as an adult being blown off such as myself whil continuing to become more dibilitated.  this is not the case for all chiari ppl. drs need to look at the fact that the opening in the base of the skull and the anotomy of each person is different. some ppll can be herniated 15mm and only get headches becuz the opening allows flow most of the time..  others can have 3-5mm and have multiple disabling symptoms , like myself and my son, due to the small opening squeezing the brain,like that of a tumor, which could trigger szr also, and cutting off csf flow, which feeds all your organs, even your skin..sometime causing rashes, etc and atrophy to muscles.  how long are you willing to wait?? my son had symptoms, pain, tingling, etc all getting worse by the month..this told me that it wasnt going to get better.. we proceeded with the decompression with Dr Hamm @ childrens hospital detroit, he was wonderful!!! and very compassionate and explained so much. the MRIs never showed decresed csf flow, yet when dr came out of surgery, he told us he was so glad we trusted ourselves and him to do  the surgery, because my son had bruising and anemic tissue to the brain and stem,,,,indicating that his flow was indeed blocked .  It only makes sense to me that it was indeed blocked, and squeezing his brain and all the 7-8 nerve centers that lie there,..digestive, shoulder, speech, muscle, tongue, face etc... maybe not ALL the time, excercise, standing, lifting, etc all increase your flow and pressure..hello??? why do you think our veins swell and pop out when we excercise??? do you not think this happens to spinal fluid as well?  it is baffling to me why these drs dont get a clue.  but like Dr hamm, there are those that takethe time to study it and listen, actually listen...hope this helps...best of luck,..God bless you all.   p.s. my sons symptoms are pretty much gone, except for the seizures during growth spurts,  we are hoping that the pressure from the chiari caused the neuro response of szrs, and that it will take some time for the brain to 'bounce back',  but the drs STILL need to get it together and figure out the correlation and hell these kids

[vanpulver]

My daughter is 4 and she had a very long trance like seizure. It happened at 5:30am and I felt the need to sleep with her that night and I'm sure glad I did.  I was awaken by her tummy gurgling like she was about to vomit. I got her up and into the bathroom and she wasn't waking up.  I thought she was in a very deep sleep but her eyes were open.  I sat at the toilet with her cause the gurgling started again and she was completely unresponsive!!  I tried everything to wake her up and than I started to feel very panicked inside.  We turned on the light in the bathroom hoping this would wake her, but nothing. It was like there was no life in her she just stared off with nothing in her eyes! So finally with the lights on I could see her clearly and saw her eyes were twitching back and forth very fast and her right hand was twitching as well. I thought she was dying before the lights were turned on.  And this really freaked me out because I was there when my mom passed away and it was almost like that!  We called 911 and the lady said she was having a seizure. I was a bit releived to now know a name to put to it. While on the phone with 911 we had her on her side and than she started to vomit, it all came out her nose because her jaw was clenched tight.  This really worried me because of course right away I started thinking, "what if I wasn't there, she could have chocked on her vomit laying on her back because she was completely unresponsive and wasn't moving".  Before the ambulance came after vomiting she streched out and than curled up on her side and went to sleep.  So I have no idea how long she was having a seizure for, I was awake for 30 mins of it and when I woke she was laying there with her eyes wide open.  So it could have been an hour or more!!  I researched this and this seizure is totally not normal!  So ambulance came and stayed at the hospital till about 8:30am.  They had to wake her to talk to her and make sure she was responsive. After this she started crying so much because her right side of her head hurt sooo much!  After this now her ears are very sensitive.  It has gotten better but still happens from time to time. She had 2 EEG's and they both came back normal. Then they ordered a MRI and that is where they found the Chiari I Malformation.  It is down quite far and just like some of the stories above the Peds Doctor said the seizures probably have nothing to do with the Chiari I Malformation !!!  So we have an apt in four months time so we will see what they say!  My daughters teacher has recently told me she has seen her eyes twitching in class, so I am wondering if she is having micro seizures now??  And today her head was hurting in the back and right side!!     I have a friend in San Diego who works in the Neuro Dept and he is passing along the scan to his specialist. Hopefully getting 2-3 reviews we will have a good game plan!! We live in British Columbia, Canada.  I do hope the doctors at the Childrens Hospital in Vancouver have there stuff together!!!   Thank you for all the prev posts!!  Nice to read others experiences!!  :)