Aa
Seizures Caused by Arnold Chiari?
My mom is 41 years old. She got diagnosed with Arnold Chiari Malformation 1 in 2004. They found it when she had a seizure at her job & she had an MRI. At first, they said they were stressed related. Since then, weve been told a bunch of different things. She had the decompresion surgery in October of 2008 & right after the surgery, she didnt experience any headaches, dizziness, or seizures for about a month. Then they came back. So tonight, she just got out of the hospital after being life-flighted from our local ER. The doctor told her that her seizures were not caused by the malformation, but stress. They said there was no point in giving her surgery. She has been on various seizures medications & none have been sucessful. He said all the medicine she was taking was poitnless. They want her to see a doctor that treats non-epileptic seizures & he wants to treat her with meditation & things like that. She talked to an Arnold Chiari Institue & they think her seizures are caused from it. I would like to hear from some people that have dealt with Arnold Chiari, does it or can it cause seizures?
I take Amitriptyline for my seizures and I also have Chiari and I also go to the institute and have yet to have the surgery. I have been seizure free for almost three months. I started with grand Mal seizures in January of 2016 and was seen by my neurologist and a specialist and she said they weren't epileptic seizures. So now I am going to see a new neurologist in about a month or so.
1 Comments
I also have to deal with having absent seizures as well and I also have to deal with having tourette's syndrome.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I saw you posted to a new thread and will answer you there....
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 guess I was just wondering if anyone else has had this happen to them.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
No, I am not a medical professional at all....just another person that has had this condition and had surgery and I am here to share my experience and what I have learned about it.
It is possible for Chiari to cause someone to experience seizures....some even develop epilepsy...and that can be post op....some have them prior to surgery and once they have surgery no longer have them...we are all different and how our Chiari affects us can be very different then it affects someone else.
Did your daughter have a CINE MRI? Have they ruled out related conditions?
dear selmas my daughter was just recently diagnosed with chiari and she is 6 yrs old. are you a licesened doctor? and can the chiari cause her to have the grand maul seizure she had?
I have the exact same thing. Mine started with my body going limp and paralyzed, and then over time it started with shaking and I can speak but its very difficult. Eventually the shaking has gotten so bad that I now lose consciousness when I have big ones, and I'll gasp for air or stop breathing. The seizures would go through cycles of being small then very big, and now when I have seizures they can last anywhere from a few minutes to half a day. I also started jerking after a few years and am having drop seizures anywhere from 15-100 times a day. I went to an urgent care unit when I felt one coming on and they said because I was speaking that it wasn't a "real" seizure and to see a psychiatrist, and then they quickly ushered me out of the building since it wasn't serious. Seeing a neurologist in April, hopefully they won't think I'm crazy...
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so sorry ur DS has been DX'd with this condition and is also dealing with seizures....some tend to have both.
Ugh....I hate when we r dismissed like that...sigh....the list can be found a few ways, going to the Health Pages, or using the search this community feature.,..how do u access this site, a phone or a laptop? sometimes the way u access u do not see all the features and it helps me understand how to direct u to them.....here is the link to the HP's- http://www.medhelp.org/health_pages/list?cid=186
Keep in mind the list is not a referral nor endorsement,....use it as a tool to research Drs and keep in mind u may also need to travel as it is not a complete list.
You mentioned a list of chiari specialists that members have have successfully used. How do I get a copy of the list? Are there any in Minnesota? My son is having seizures with his chiari and has been repeatedly told they are pseudo seizures or that he is faking them. Your list would be helpful
DonnaW
DonnaW
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Meds regardless if they would help ur seizures ...ur question should be what all do I need to look at to see if I am a surgical candidate...not all of us are surgical candidates...so u need to find out if u have a CSF obstruction and what else u may have in addition as there r related conditions...from ur post, it is not clear if that all was done to this point.
Not having surgery could make u feel worse just as having surgery could....the key is finding a true Chiari specialist to help guide u.
i was diagnosed with epilepsy in june 2012 im 37 years old never been sick had two seizures mri showed chiari malformation i get light headed headaches in the back of the neck is there any meds that can help so i do not have to have surgery keppra does not help
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
A big name hospital is not always the best place for Chiari, u need a true chiari specialist..the members have compiled a list of drs that treated their chiari for u to use to research drs....not all may be true chiari specialists, but they did successfully treat a member here for it.
The list is not a referral , just a means to help u start ur research.
Have ur mom join us here....we r pretty good in the support area...and can share our experiences and info.
Not know if ur mom can travel with her ins to get to a chiari specialist...I know of a Dr in CO....there are a few in CA....many of us do need to travel to get to the right dr.
Do u know if ur mom had a CINE MRI to see if she had an obstruction to her CSF flow?...a syrinx?, did she have a MRI of the thoracic and lumbar spine too?
It may help to know many of us r told we need to see a shrink and need zanax or prozac,....I was and was rx'd these meds.....and told it was anxiety and yada yada yada....so she is not alone, plus a compressed brain stem can cause anxiety and depression....all sorts of hyper emotions....we cry easy....and most times don't understand it.
Most of the symptoms u mention if not all of them can be attributed to chiari.
Look at our list of chiari drs and do some research.
Ask ur mom to join this forum, we r happy to have u both here, but sorry for the reason u had to seek us out.
ive had three seizures scariest thing ive ever been through but they never figured out the cause i had i forgot what its called but a test to track seizing but it was after the seizures where over so idk y but i have experienced them.
molly
molly
My mom, 60 years old, has been diagnosed with both a chiari 1 malformation and a frontal lobe meningioma measuring 2.2*1.7*1.9cm. She was in the hospital for 2 weeks with a severe thunder clap headache and while she was there developed many different neurological problems. I.E. failing the finger to nose test, left side weakness, change in gait, as well as cognitive problems. The doctors that first saw her attributed every symptom and every new symptom as psychogenic. It took me researching and finding Chiari before someone would even look for that to be the cause and when they found that she had a chiari malformation they wrote it off as being insignificant. The care got so bad that we did a transfer to a large well known medical center attached to a well known college. They were able to control the head ache and drop the pain from a 8-9 down to a 3-4 on a scale of 1-10 and sent her home. Since her visit the neurological problems have gotten better with the exception of a fogginess and some cognitive problems (she used to read 3-4 books a week and now can't manage to get through a chapter) Recently she has been experiencing an increasing amount of seizures, as others have mentioned her seizures are non-epileptic and include shaking, jaw locking, auditory halucinations, and what she describes as a flashing light sensation. The hospital and neurological staff have been a nightmare even at this large research medical center, they too have attributed all her symptoms to "stressors" and say that everything she is experiencing is psychogenic and she need a psychiatrist not a neurologist. I keep trying to reassure my mom that there are others out there who are going through the same things and that there is hope as long as we find the right dr. Does anyone know of any good resources, support groups, or anything that can help. Its sad to see my mom go from a very healthy active woman walking 6-7 miles a day, to a person suffering from 4-5 seizures a day and being told by neurologists that she is basically crazy.
Hi again!
I just read all of your symptoms and find it scarily similar to my own. I also has not epileptic seizures. I have been intibated, felt like I am gasping for air and many of the other things you have said but I am in a hurry right now so want to get this down quick. I had many eeg studies which always showed no abnormal activity. This can be kind of difficult but this is how I finally got a diagnosis and knew the seizures were from surgery. I was at work (I work for a dcotor and she knew many of the problems I was having) but one day I felt a seizure coming on seeing red flashing lights/ seeing red dots and i told her that something was not right and she hooked me up to an automatic bp machine, and an O2 saturation machine. From this we found that I would go unconscious when my O2 levels dropped to about the 50's they continued to drop they hit 27 and that was when I began seizing. The ER doctor i saw, not a chiari specialist, knew that the chiari was causing the problem my herniation was about 27mm at the time. She referred me to the chiari specialist and got me in asap he reviewed all my scans and found that I also had basilar invagination which it related to chiari and seen in very few cases and this in conjunction with the chiari was compressing my brain when I turned my head and causing the O2 sats to drop so low and cause the seizure. Maybe this would be something to ask about? I hope that you can find some answers very soon!!!
I just read all of your symptoms and find it scarily similar to my own. I also has not epileptic seizures. I have been intibated, felt like I am gasping for air and many of the other things you have said but I am in a hurry right now so want to get this down quick. I had many eeg studies which always showed no abnormal activity. This can be kind of difficult but this is how I finally got a diagnosis and knew the seizures were from surgery. I was at work (I work for a dcotor and she knew many of the problems I was having) but one day I felt a seizure coming on seeing red flashing lights/ seeing red dots and i told her that something was not right and she hooked me up to an automatic bp machine, and an O2 saturation machine. From this we found that I would go unconscious when my O2 levels dropped to about the 50's they continued to drop they hit 27 and that was when I began seizing. The ER doctor i saw, not a chiari specialist, knew that the chiari was causing the problem my herniation was about 27mm at the time. She referred me to the chiari specialist and got me in asap he reviewed all my scans and found that I also had basilar invagination which it related to chiari and seen in very few cases and this in conjunction with the chiari was compressing my brain when I turned my head and causing the O2 sats to drop so low and cause the seizure. Maybe this would be something to ask about? I hope that you can find some answers very soon!!!
Hi.
I agree. You have a wonderful son. I'm sorry you are going through so much pain.
Can I ask what your seizures are like. My son has Epilepsy and I am sure when he was diagnosed with them in January they were Tonic Clonic seizures that I witnessed him having. When they did the tests on him they found he also has Chiari.
His latest seizures he is having don't seem like Epilepsy. They last for anything up to an hour and he is fully conscious and responsive throughout it (Although he finds it difficult to speak) His whole body just shakes. No jerks.. just shaking.
Praying you get all the help you need.
Jackie.
I agree. You have a wonderful son. I'm sorry you are going through so much pain.
Can I ask what your seizures are like. My son has Epilepsy and I am sure when he was diagnosed with them in January they were Tonic Clonic seizures that I witnessed him having. When they did the tests on him they found he also has Chiari.
His latest seizures he is having don't seem like Epilepsy. They last for anything up to an hour and he is fully conscious and responsive throughout it (Although he finds it difficult to speak) His whole body just shakes. No jerks.. just shaking.
Praying you get all the help you need.
Jackie.
COMMUNITY LEADER
Hi...what is the reason behind ur decompression being bad?......I can suggest u get copies of the MRI's u have had and the reports and send them off to one or more of the chiari drs on our list after u do a bit of research.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
The eyes watering is something many of us have experienced.....
I would try to find someone to sit with u so ur DS could get to school......and I pray u find a dr that can help u feel better soon.
"selma"
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
The eyes watering is something many of us have experienced.....
I would try to find someone to sit with u so ur DS could get to school......and I pray u find a dr that can help u feel better soon.
"selma"
Hello,
I am Milan's mom. I have had SEVERE seizures, including falling thru a glass coffee table, while driving & EVERYTIME i shower/bathe. I have had several EEG studies at Cleveland Clinic & Cleveland University who ended up doing my decompression surgery. I was diagnosed with migraines in my early 20's. They began managing my pain and said it was everything from migraines to tension/stress headaches, panic attack headaches and I had over 20 cat scans. 15 years later, I was sitting at my desk at work and had a severe grand mal, which lasted over 2 minutes, I bit off a piece of my tongue and while at the emergency room, they did an MRI and that is how they discovered it. I tell all the Neuro docs that I understand my seizures are not epilitic in nature but they insisit that Chiari does not cause seizures, regardless of what they were taught. I also had trouble swallowing so they ordered a Video Swallowing Function Test, which showed that I regurgitated my food slightly everytime a ate, which was also a symptom of Chiari. My initial measurements in 2004 when it was discovered was 2 mm down into my neck. I was put on Dilantin/Depakote for over 4 years and finally University Hospital in Cleveland did the surgery. By that time, the measurement was 15 mm down into my neck. I have beeen gasping for air, feeling light headed, extrememly short of breath. Just this Sunday, I was life flighed to University. They intubated me before the flight and I never felll asleep. I was awake during the entire episode. They went down too far with the tube and had to move it up some. I am still coughing up blood and now have SEVERE chest pain. They gave me Heparin IM/stomach, over 2000 mg of Keppra IV and Lipitor while I was there, then sent me home with a recommendation for a nurse, not to bathe/shower, cook, basically just sit. 6 doctors accessed me and they all insisted that because the seizures were not epileptic, I should consult with a specialist who uses meditation, accupuncture & breathing exercisess. I tried to explain that I am not under stress or anything that could keep causing the seizures but they refuse to listen. I was on a video monitor, whwere I did have approx. 4 seizures but again, not epiletic, so I was home withing 36 hours of being taken there. I also have a heart murmur, GERD, sliding hiatal hernia, total abdominal hysterectomy(cervical cancer), 2 rt. knee surgeries, my appendix removed, thryoglosall duct cyst removal, diverticulitis, 5 endoscopies & 4 colonoscopies, frozen shoulder, torn achilles tendon, broken rt & lt wrist. My body is in such severe pain, most days I sit for over 12 hours doing nothing. The pain is so overwhelming that I cry without even knowing it. My eyes always water from the headache. The doc said I had the worst case of decompression he had seen. But to no avail, I am home, my son had to stay home from school again, and I am having aura of seizing - I see red or feel like I am about to throw up. What if anything can I do?
I am Milan's mom. I have had SEVERE seizures, including falling thru a glass coffee table, while driving & EVERYTIME i shower/bathe. I have had several EEG studies at Cleveland Clinic & Cleveland University who ended up doing my decompression surgery. I was diagnosed with migraines in my early 20's. They began managing my pain and said it was everything from migraines to tension/stress headaches, panic attack headaches and I had over 20 cat scans. 15 years later, I was sitting at my desk at work and had a severe grand mal, which lasted over 2 minutes, I bit off a piece of my tongue and while at the emergency room, they did an MRI and that is how they discovered it. I tell all the Neuro docs that I understand my seizures are not epilitic in nature but they insisit that Chiari does not cause seizures, regardless of what they were taught. I also had trouble swallowing so they ordered a Video Swallowing Function Test, which showed that I regurgitated my food slightly everytime a ate, which was also a symptom of Chiari. My initial measurements in 2004 when it was discovered was 2 mm down into my neck. I was put on Dilantin/Depakote for over 4 years and finally University Hospital in Cleveland did the surgery. By that time, the measurement was 15 mm down into my neck. I have beeen gasping for air, feeling light headed, extrememly short of breath. Just this Sunday, I was life flighed to University. They intubated me before the flight and I never felll asleep. I was awake during the entire episode. They went down too far with the tube and had to move it up some. I am still coughing up blood and now have SEVERE chest pain. They gave me Heparin IM/stomach, over 2000 mg of Keppra IV and Lipitor while I was there, then sent me home with a recommendation for a nurse, not to bathe/shower, cook, basically just sit. 6 doctors accessed me and they all insisted that because the seizures were not epileptic, I should consult with a specialist who uses meditation, accupuncture & breathing exercisess. I tried to explain that I am not under stress or anything that could keep causing the seizures but they refuse to listen. I was on a video monitor, whwere I did have approx. 4 seizures but again, not epiletic, so I was home withing 36 hours of being taken there. I also have a heart murmur, GERD, sliding hiatal hernia, total abdominal hysterectomy(cervical cancer), 2 rt. knee surgeries, my appendix removed, thryoglosall duct cyst removal, diverticulitis, 5 endoscopies & 4 colonoscopies, frozen shoulder, torn achilles tendon, broken rt & lt wrist. My body is in such severe pain, most days I sit for over 12 hours doing nothing. The pain is so overwhelming that I cry without even knowing it. My eyes always water from the headache. The doc said I had the worst case of decompression he had seen. But to no avail, I am home, my son had to stay home from school again, and I am having aura of seizing - I see red or feel like I am about to throw up. What if anything can I do?
HI and Welcome,
I had seizures associated with the Chiari malformation since my surgery I have not had any seizures. It took a very long time for the diagnosis as to why the seizures where occurring, but they finally determined that my oxygen saturation rates were dropping well well well below the normal levels, this could be maybe something to ask about. I hope that you can find the appropriate answers!
I had seizures associated with the Chiari malformation since my surgery I have not had any seizures. It took a very long time for the diagnosis as to why the seizures where occurring, but they finally determined that my oxygen saturation rates were dropping well well well below the normal levels, this could be maybe something to ask about. I hope that you can find the appropriate answers!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
What a wonderful advocate ur mom has...goodness...u r very special to be checking on all this for her...she is blessed.
Yes, chiari can cause seizures...we do not all suffer from them...some can develop epilepsy post op...some have seizures b4 surgery...it also seems more prevalent in children...but adults r known to have them.
Having the right drs is key......and there is one in Ohio...but, research all drs in the chiari area of specialty to find one that is right for ur mom.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
If there is ne way we can help, please let us know.
"selma"
What a wonderful advocate ur mom has...goodness...u r very special to be checking on all this for her...she is blessed.
Yes, chiari can cause seizures...we do not all suffer from them...some can develop epilepsy post op...some have seizures b4 surgery...it also seems more prevalent in children...but adults r known to have them.
Having the right drs is key......and there is one in Ohio...but, research all drs in the chiari area of specialty to find one that is right for ur mom.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
If there is ne way we can help, please let us know.
"selma"
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
