Chiari and Seizures

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?

[selmaS]

Hi and welcome to the forum. Below I have copied and pasted info I found on the web.
It is very important to get a chiari specilaist to see ur daughter.And it may prove beneficial to remove the braces to do the correct studies on the MRI.
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[ In children with cerebellar fits and Chiari I malformation the presentation is an extreme manifestation of brain-stem dysfunction. The most feared consequences of cerebellar fits in this population are respiratory arrest and sudden death. This outcome may be avoided by early diagnosis. Thus, it is important to remember that cerebellar fits in patients with Chiari I malformation can mimic other paroxysmal events such as epilepsy and cardiogenic syncope. The diagnosis of tonsillar herniation can be confirmed using MR imaging. The response of these patients to decompressive surgery is gratifying.]
******************************************************************************************************
I hope you find this info helpful and please post updates on ur DD's progress.
"selma"

[JameeWM]

Thank you so much for the welcome note and your time spent researching my question.  You are very sweet.

This paragraph was what made me feel very anxious initially and focused my efforts on trying to find out more.  It's a small study that seems to be cited a lot online, so I'm not sure whether there is more quantitative medical data that supports the notion of being misdiagnosed with Epilepsy, when in fact the Chiari is the real diagnosis.

We have an appt with a Ped Neurosurgeon Wed am, but our insurance is not cooperating, so we may have to postpone.  In speaking with a Nurse Practitioner at another Ped Neurologist's office, he explained it as if the Chiari was causing the seizures, then the pressure from the Chiari would be so bad that it would cause projectile vomitting.  For now he felt that we should treat the Primary Generalized Epiliepsy (diagnosed after her abnormal brain wave activity all over her brain on the EEG) and the 10mm (or 1 cm) Chiari (diagnosed via the MRI's), as separate medical conditions.

Thank you so much for your kindness and concerns.  What conditions do you or your family have that brings you to the forum?

[selmaS]

Hi Jamee,
First let me say I do not know how I would have handled this had it been my daughter.And I applaude ur efforts to find out as much as you can about this and related conditions.

I am here bcuz I too have these wonderful issues. I was dx'd Feb. '08 after yrs of searching at the age of 48.....I finally was to see a chiari specialist last Monday and Tuesday ( 2 day event) at The Chiari Institute in NY.
My list of conditions are:
chiari,tethered cord,ehlers danlos,DDD,cervical spinal stinosis,cranial instability,restricted CSF flow.

I am one that believes in looking for everything and then decide which needs attention first.I have seen where as soon as someone has a chiari dx they get a decompression and then when it fails then look and find they had tethered cord and that is why it failed.

I was told my TC would be addressed first and then my chiari re evaluated prior to a decesion of surgery. I am happy with that .

I hope you continue to use this forum for info and support....and in ur quest ur posts may help others as well.

Godspeed
"selma"

[JameeWM]

Hi, Selma:

Wow!  That is very interesting.  I applaud you for really becoming your own medical advocate and pushing the docs to expore all conditions before making a decision to move to surgery.  It's my impression, just starting down this path, that Neurosurgeons are exactly that - Surgeons - and move pretty quickly to a decision to perform surgery.

My husband is a Chiropractor and is very hesitant when it comes to these specialists for exactly that reason.  I remain open to all input, but want to make sure we don't jump to surgery before it's needed.  Right now we need a good flow study done, given that her braces are impeding the ability to do such on an MRI.  I am reading a lot about how the first steps seems to be decompression surgery.  I don't want to move that quickly unless it is medically necessary.

Selma, how did they find/diagnose your tethered cord and other conditions?  Also, can you tell me more about the Chiari Institute in NY?  That sounds really interesting!

Thank you so much for your support, Selma!  It means a lot.  

We have an appt w/the Neurosurgeon tomorrow am.  I'll let you know how things go.  In the mean time, I'm fighting our insurance company - United Healthcare - to make sure it is insured, even though the docs are out of network (there are extremely few NS's in network with UH).

[hawkfan]

Hello!  My 3 year old daughter was born with sleep apnea.  After 3 years of several different hospital visits and tests she was diagnosed last year with Chiari 1.  She had decompression surgery last August.  The surgery was a success in that her apnea episodes are less fequent and less severe, but we are now dealing with potential seizure issues.  We have a great Neurologist that specializes in chiari.  When she was a baby she had several EEG and they all came back fine, so we are just trying to see if something new with the chiari is causing this.  I do know from our experience that they doctor's may be experts in their fields, but you are a mother and therefore an expert on your daughter.  They do not know your daughter as well as you do so make sure you follow you instincts and get the tests and treatment necessary.

God Bless!

[JameeWM]

Hi!
Thanks for writing.  I am so sorry you are dealing with this.  Your poor little girl.

We visited the Neurosurgeon this morning, and he is the third doctor that swears that there is not a correlation between Chiari and seizures.  I am still unsure.

So your daughter has never had any abnormal EEG results?  My daughter had one EEG, and they immediately saw abnormal brain wave activity coming from various parts of the brain, which lead to the immediate diagnosis of "Primary Generalized Epilepsy".

Tell me more about the potential seizure issues.  Has she had a seizure?

[cornczech]

I was just dx with Chiari and was specifically told by my Neuro doc that this was NOT the cause of my seizures. He doesn't know what caused my seizures. Hmmmmmm.....He also seemed to give me some kind of impression that this was "no big deal"...his exact words were, "don't even think about the Chiari..." I demanded to know how low my tonsils were or whatever....."no big deal...6mm"....but yet I have all these wierd symptoms that I just told myself these past years and months were just me getting older.....me paying for a LOT of surgeries.....medicines....abusing my body in various ways....me being a HYPOCHONDRIAC...yet now I am told I have this condition that explains a LOT......so...I wouldn't be surprised if seizures can be caused by a Chiari!

[JameeWM]

Hi,

How confusing, hah?  I would highly recommend you get a second Neurosurgeon opinion, and if you aren't already seeing a Neurosurgeon, go see one.  A Neurologist does not treat a Chiari.  A Neurosurgeon does.

My daughter has a 10mm (which is 1cm) Chiari, but doesn't have symptoms.  What are your symptoms?  I would push hard for an MRI with a "flow study" to make sure the flow of your cerebrospinal fluid is not being hindered due to the Chiari.  That is the most important thing to assess, I believe.  It could also explain your syptoms (symptoms).

What area of the country are you?

[cornczech]

Yeh, pretty confusing! I am in Chicago. I have to admit, I have abused the heck outta my poor body and have had so many surgeries in the past, that I push most of the symptoms off as being nerve damage from surgery, drug use, (I was addicted to painkillers for about 3 years in my late 20's/early 30's), and alcohol abuse, (I went rhough rehab in Feb. of this year after 8 years of daily heavy alcohol use). I am ashamed of this, but I have to take this as part of my life and it is what it is....however......I write this because I don't go to doctors too often as I just don't like the looks and treatment I get when I admit to being a messed up wreck....despite this fact, I am a human being under this wreck and know that this Chiari diagnosis might explain certain aspects of my medical complaints that I had BEFORE I became a wreck and that are remaining after I have gotten "help"....headaches that feel like the contents of my head are gushing to the back of my head and my skull is going to blow off....strange twitches and numbness of the face and extremeties....I walk like a drunk, (and this is when sober!) and I will sometimes just start to slur. I've had two unexplained grand mal seizures and am going nerve deaf, especially in my right ear, (probably from that neuroma)
Anyhow.....my husband and I agree that I need a break from doctors right now. in 2002, I was having diverticular attacks....gut surgery for an intussusuption of the small bowel in 2004....am hysterectomy in 2005...and a hernia to repair the hole left from the previous two surgeries....so as you can see...I don't need any of this caca right now.....
I am going to wait until my regular neuro guy returns and then ask HIM what he thinks I should do. At 6mm...what is there TO do? My symptoms are a pain in the butt and can be kinda scary at time, but not life threatening, (with the exception of the seizures, but I don't think I'll ever have another of those).
Thanks for your response and good luck to your daughter with her issues.

[chiarigirl11]

Hi everyone im elle and i just got diagnosed with chiari  6 months ago. I had headaches all my life but they were very mild and didnt come that often. about a year ago i started saying what alot and i used to have reallly good hearing so i didnt really think much about it. but then my mom noticed me talked wicked loud. so i went to the ear doctor and got a hearing test and turned out i was deaf in my right ear...the doctor did tons and tons of tests why i might have become deaf..after trying everything she accused me of faking it! so my mom took me to another doctor and she didnt know why i couldnt hear either! the ear doctor ordered an MRI and found out that I had chiari malformation. this came to a big shock to me and my family because i never really got sick or had anything wrong with me, other than ADD and Asthma, but they never really bothered my life lol. i never ever heard of chiari.....noone in my family had heard of it either! lol. the doctor blamed my deafness on chiari. so i was sent to a neurosurgeon and explained everything and he said that all my symptoms popped up all of a sudden because my head grew a little which cause it to be even more tighter in my head.when i had headaches when i was little they werent that bad. but i did go to the doctor for headaches when i was little and my primary doctor never went any further than saying it was just a migraine and that was it. when i went to the neurosurgeon he explained the surgery and my mom was like OMG noooooo. (im an only child, and me and my mom areveryyy close) and my moms a nurse so she knows about surgeries and all that. so we went to go get another opinion and this other doctor said it wasnt that bad and i was like woahh it is bad, the headaches are terrible!!! he didnt even listen to my symptoms ! i was very mad. so now he sent me to a headache specialist.. i have to go in june and i dont know why hes sending me to one  because no medications help chiari and i these headaches are really killing me here....its awful...my symptoms are... bad headaches on the lower right back side of my head and i get pain in my neck and down my spine, i have trouble swallowing, i get very dizzy when i walk, and my singing voice changed completely!(does anyone know why chiari changes your voice???? cuz ide really luv to know!) but yeah i guess well see wat happens wen i go to the headache specialist. and i get soooo mad wen people call me a hypochondriac or wen people say oh it cant be that bad.. because they honestly have no clue how bad chiari really is. even the doctors dont know how bad the headaches are! I wish everyone the best.
~~Elle~~  =)
(i hope i helped haha i dnt know if i did cuz im only 15 but yaa i really enjoy reading everyones stories)

[selmaS]

Welcome Elle...I am glad u accepted the invitation to join our forum.

What u described above in getting family members and drs to understand what is going on...I am sure most here can relate to.

If u haven't read the poem at the top of the forum by Dr Oro, please do...it gives us all hope that we can and will find the right dr.

I hope u continue to share with us ur chiari experiences and please ask ur mom to stop in and read thru the threads as well.

"selma"

[chiarigirl11]

yaaa i did read the poem it was amzzzing!!!!
my mom understands totally its the drs that dont haha
go figure?? haha
but me and my mom are looking into the chiari institute
so thats good =)

[selmaS]

I am glad u liked the poem.....and that ur mom understands what u r going thru.

TCI sounds like a good option...that is where I am going as well.

"selma"

[Smurphy2]

Hi, I just had a seizure less than a week ago and then found out that I have CM1 but they didn't think it was realated to my seziure, from reading a ton about this I'm starting to see more and more people that have had this happen to them. I thought I would just share that because I feel like I was getting a bunch of BS from the ER doctor and other doctors out there. I don't think there is enough reasesrch about this to difinitively rule out that seizures aren't related to CM1. This is just my opinion and I'm only a nursing student but sometimes common sense should be used!

[selmaS]

Hi and welcome to the Chiari forum.

I hope u investigate further by sending ur MRI's and the reports to a true chiari specialist....med schools are not sharing updated research on chiari let alone chiari and other issues like seizures.

The drs that make chiari and related conditions the focus of their practice and do their own research are the ones to see.

I hope u continue to share ur concerns with us as well as ur chiari journey.....we r happy to have u join us here, but not happy for the reasons that made u seek us out.

"selma"

[jacmurphy]

Hi
My son also got his Chiari diagnosed after he had 2 Tonic Clonic seizures. They have always said that these 2 conditions are not related.. but I too have my doubts.
Regardless of his symptoms they only treat his Epilepsy. The word Chiari is Taboo with our NL!
As we are also Murphy's I'm thinking maybe it's a Murphy thing. You know.. Murphy's Law! lol

[bntlstep]

my 20month old daughter started with fainting spells three, then had a grand mal seizure that led us away from her cardiologist and to the neurologist.  With 2 CT, 2 abnormal EEG, and a MRI. right frontal lobe focal epilepsy was diagnosed and Chiari 1 malformation on the MRI. . This has not even been mentioned to me yet. I got a copy of her MRI and read it there.She is on Keppra and we have had to increase the dose with the increase in seizures. I am scared and without words.  I am not stopping but I could use some information to calm my fears anyone know of any resources that are reliable. Any specialists I can contact?  Does anyone know of anyone that works solely with chiari and recognizes seizures? I am confused why the doctors don't connect the two since they are both related to the brain.  Why isn't it talked about either? Help.  

[selmaS]

  Hi and welcome to the Chiari forum.

I saw u posted a thread so I will respond to ur questions there, just want to welcome u and let u know u r not alone....we will try and help u calm ur fears.

  "selma"

[jacmurphy]

HI.
My son's journey started with the Tonic Clonic  seizures. (Grand Mal seizures) He was given a CT scan and apparently the Chiari showed up in that.. but they didn't tell us about it for months. Not until he started having a lot of other sympthoms. And even then they said it's not chiari symptoms.
I still believe that even though they say the Epilespy and the Chiari are not related ( and I kind of believe them) I do believe that one thing triggered the other. He was having headaches and back pain for a few months before his 1st seizure.
I would say you educate yourself on both of your daughters conditions so you know the difference between Epilepsy and Chiari and also the side effects of the meds she's on. My sons meds has just been changed from Epilim Chrono to Keppra and last week he had his 1st seizure in over a year. I'm devastated.
Lastly.... not everyone with Chiari has symptoms. Many live a perfectly normal life with little or no symptoms. Your daughter may well be one of the lucky ones.
I know exactly how you are feeling now. The shock of your baby having these seizures and then this diagnoses. As the others will tell you.. If you are in a position to get a Chiari specialist then do this. We're not so lucky here in Ireland.
God Bless.
Jackie.

[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!!  :)

[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

[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"

[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"

[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...

[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!!!

[selmaS]

  Hi, I am well aware that TC does not always show on a MRI, but other things like the brain stem do, and an elongated brain stem is a tip off to TC as well as a  neurogenic(sp) bladder....the urodynamics testing will help determine that as well....and then there is the sacral dimple.

I was lucky in that my TC was visible on MRI...and have all the other factors as well.....

I know just what u mean with Drs blowing u off, but it is bcuz they have no idea how to help...u need a Dr that is well experienced like those at the centers u mentioned...that is what I had to do, I traveled out of state when traveling from city to city didn't help.

  Some one may be worse off then us, but we still need to push for answers so we may feel better.

  Do look at the list of Drs and do some research on them.

  Thanks for sharing ur story

      "selma"

[SkitzoSuzy]

I was diagnosed with Chiari (8mm herniation) because I started having seizures. I was pregnant with my 4th child & had no family history of any seizures at all and just started seizing one day. I had multiple seizures and was unconcious for aprroximately 45 minutes. I was rushed by ambulance from the nearby hospital to the Erlanger Teaching Hospital in Chattanooga, TN. My EEG (which the main dr on my case, Dr. Sonny, told me not ALL seizures will not leave a trace) and everything was clear except for my MRI & MRA. I had 4 other DRs on my case all of which said it was unrelated. When I went to my NL (who is wonderful and takes an intrest in treating Chiarians & quite to my surprise knew quite abit as opposed to other drs of which I had to tell THEM what it was) about 4 months later she said that it was. She said any time there is a disturbance (such as an obstruction of CSF or an abnormality) in the brain it can cause seizures. So I would deffinately search out a good ped specialist. ( I apologize if I my post is just a repeat of anyone else's, I did ot read  all of them.)

[net72]

Hi there!! Thanks so much for your support!! i am pretty much internet and computer illiterate here ..but im getting the hang of it a little..i will look up your dr lists!!i was great with the computer at work..hee hee!! any how. if i seem like a dunce for spelling errors or scattered in thought, its because i am trting to hurry and communicate while im on wii-fii at mcdonalds as we cannot afford the internet due to medical expenses...i was a rad. tech and ortho. surgeons right hand man for 15 yrs,.. not the front desk... noooo typing skills!!lol.  any how, as you can imagine, my son is my main concern,  and i only use my experience to help him... and i  pray that its enough.. so far  it has not been the most positive experience, and i pray real hard that the Neurosurgeons and neurologists stop playing pass the buck and get  the research horse already!! DOCUMENTATION!!! if you dont know what to do..stop trying to fit it in this little box of what you know and try to figure it our...but wait...first you have to listen to your patient...you cant just not document because your not seeing it...it will end in mis use of the wrong drug, or end up making hyour patient give up..and thats not what being in medicine  is supposed to be about... if you dont listen to your  patient..how you supposed to help them???  I had a dr tell me my gait was off...and in his documentation..he wrote nothing about what i was experiencing, and had the audacity to dictate "gate-normal" ??? what???  ok get with the program here, you cant help your patient if you cant even bother to notice things and write them down!!!   no wonder patients in neurology end up on antidepressants!!!   stop telling them their crazy!!!   any how,  my son...i have no dbt that his szrs are a direct effect from the pressure of his herniation..same as those szrs caused by cerebellar tumoor..hello doctors???  now i know not all chiari pts have szrs, just like ot all have tc symdrome etc.  but its the only thing that makes sense her for my son..they are treating him for frontal, temporal, etc epileply which come from the outer cortex of the brain, and all his eegs show nothing to this nature!! you can oly effectively treat a szr if you find its origin..hello?? check the cerebellum??? compression can cause irregular neuronsignals too.. anyhow..im looking into a neurosurgeon at rainbow clinic in cleveland  thats supposed to be working hand in hand with a neurologist..go figure..(new concept..no passing the buck!!!) to address the corrrelation between chiari and szrs, which i wholeheartedly believe. i will get you the name on my next log in.   we are trying to sell our home due to me not working due to my symptoms and now having to be home for my son..and my husband got pay cuts to boot so..i will continue to log on when i can.

p.s.  selma..i have to go..but can you plz let jenshead know that i too saw an eye dr that saw increased vessel etc, heart condition was suspected  , had the tests..nothing really evident, however, i do have painfull palpitations often, which i found was very common with symptomatic chiari pts.   as well as ony other organ function..your sp fluid feeds all your organs, and whe blocked, you can range form any symptom from breathing difficulty to skin rashes,to muscle atrophy, and no, i dont believe the dr. little box theory of having to have a syrinx or cyst to have these symptoms...it only makes sense that with excercise, lifting, etc that the brain can drop down more than what they see on mri as does increase sp flow whn you "do too much"  all of which will not show on mri until they have a breakthru with upright ccj junction along with excercise or hold breath techniques.. until then, the Drs MUST get over the little box theory and open to the idea that that makes sense and is possible..  i had several mris, and not til i demanded a NEURORADIOLOGIST read it was my 5mm herniation found.  and when i went to the e.r. for dibilitating mind twisting pain..my mri then showed 7mm....conincidence??? i was excercising and lifting boxes all day..
i also suggest seeing a NEUROOPTHAMALOGIST to take a better look at the eye thing.. and no..shes not crazy for putting chiari on her lost of possibilities..i had  3 LPs each one triggered increase symmptms.. one was horrible.. and if you have chiari, this  is very possible and not unexpected..it can also allow for the herniation to drop more due to the extra loss of fluid?? any how thats what one of my drs said...hope it helps  good luck ..and BELIEVE IN YOURSELF!!

[selmaS]

  Hi Suzy, thanks for sharing ur experience with this topic...this is more typical with children with chiari then adults, but I know of a few, and most developed it post op...u r one of the few that had it develop pre op, and pre dx.

   Thanks : )

  "selma"

[Sammimae55]

Hi, My name is Samantha, i have chiari malformation and a list of other things that come along with it. I also have epilepsy and have been on meds for it since I was 7. Im now 18 years old and havnt had any trouble with my seizures until now. It has been a year since my cervical fusion that was done by Dr. B of the chiari Institute, and all has gone well until about a month ago. I started getting headaches that i dont get too often, then two weeks ago I had a grand mal seizure. Ive had some more almost every other day since then. My symptoms are not getting better, I am weak, sometimes dizzy and am getting blurred vision. Any idea of what could be causing all of this?

[selmaS]

  Hi and welcome to the Chiari forum.

Did Dr B just do a fusion or did u also have a decompression done at the same time?

Have u contacted Dr B to let him know?....Netime u have a change in symptoms u need to call the Dr and let them know....

Not being a Dr  can only guess and at this point and I do not know what all u had done....what meds u r on ETC...