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I was just given a bomb shell to deal with..I am almost 50, been having rt. side arm pain, tingling from finger tips up arm to neck, up side of face to temple and headaches, so my dr. FINALLY after 6 months of this gets a CT done of Head/spine and I get news,I have to have a MRI of BRAIN...Tells me, WAIT for Dr. to read results BEFORE LEAVING HOSPITAL!!! SCARED TO DEATH!!! I waited and I am ADMITIED!! I am Diagnosed as having Chiari Malformations... 2Mri's in same day. Then thye let me go with a list of what NOT TO DO's. Go in for ANOTHER MRI..Dr. says it's good news, no surgery needed at THIS time!! Wants me to see neuroscience Dr. that spec. in HEADACHES!!! Looked up Chiari and I have EVERY SYMPTOM ON LIST!!! Have had them since I was about 10-12 years old. How RARE this diseae is and only 100-150,000. Americans have it. Who do I talk to to get help that is useful, Is my life doomed to the house now? I lived to hunt, fish ride horses and my husband and kids and grankids..Now this!!! Man, this is hard not knowing whaat is next or what to do... Any help is appreciated..Cindy ;-)

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hi cindy, i'm very sorry to hear that you got such terrible news that freaked you out so badly. i can sort of relate to how scary all this is because i've been told i have a chiari I malformation and have had a distressing ordeal myself.

i'm assuming you've read up on it, and i hate to say any of this like i know all about it. i'm NOT a doctor, but it's been explained to me like this as was what was happening with my case. i had headaches, the dizzyness, and the pressure, but none of that lead to a chiari I diagnosis. as far as the rarity of this defect, it's my understanding that not everyone with a chiari I has life-altering symptoms that lead to seeking medical help, meaning that just because you have it does not guarantee you'll get "sick". everyone's case is different, so i can only lend my experience with it and hope it may give you some insight.

my problems with having a chiari I malformation started as a sort of symptom of a symptom. explaining that at it's most basic in terms of me:

i have the chiari I malformation where the base of my cerebellum is longer/bigger than usual, and because it sticks down so far it crowds the base of my skull where the cerebral spinal fluid (csf) tries to flow around my brain, there's less space for the csf to get through, so a symptom of this is a back-up of csf in my spinal column (i believe it's termed syringomyelia).

a symptom of the build-up in my spinal column was that i experienced tingling in my side, which didn't seem really serious, just odd, sort of weird, but i wasn't having a lot of pain. i'm an athlete, so i'm kind of used to just brushing stuff off, but i went to the doctor after that seemed to spread and the tingling started to fade to a numbness. i got an mri which showed the chiari I, but that wasn't the cause for concern so much as the build up in my spine.

the build-up in my spine was what was causing the numbness in my side, and because mine seemed to be causing neural degeneration, and, i think i'm remembering this correctly, the blockage was so big/so much that had i been hit the wrong way or been jarred in just the right way i could have been paralysed (which i do not say to alarm you in any way. again, this is just my experience, and i was lead to believe it was somewhere on the more extreme side of the scale. a scale that only refers to chiari I malformations, there are chiari II's, III's, and IV's which are considerably more severe. as far as chiari malformations go it's good to be a I) it was recommended that i have surgery.

the idea was that if they make more room at the base of my brain for the csf to get through, the flow would regualte, and the blockage in my spine would resolve itself.

the surgery was very basic (as far as neurosurgeries go), not really invasive since the area of question is right there at the back of your head. they removed some bone at the base of my skull, not much, a semi-circle about the size of half a quarter, and a little of the very top of my spinal column. the incision's relatively small, maybe 3 inches, at least as far as i can tell, it's a bit hard for me to see the back of my head! i was only in the hospital for 2 days, and as soon as i proved to them i could walk and everything, they sent me home. my neck was sore for a few weeks while the incision healed, but that was the worst.

i got an mri a few weeks later, and since everything looked okay he cleared me to play ball again.

i was 17 when all this happened, i'm 21 now. i've since started having the symptoms again. whether i just wanted to believe it at the time or i was lead to it i don't know, but i assumed the surgery was a quick fix and that afterwards it would never be a problem again. whatever's going on with me now could be something, or it could be nothing; i won't really know until i go see the doctor again (which i plan to do as soon as i can), but my point is that some people do get a quick fix; they have the surgery (if it seems their condition warrants it), and symptoms go away, but it's not a guarantee. i think in my case i'll have to just get regualr mri's (something i've failed to do since my surgery cause i didn't think i needed it), and make sure that no more problems arise.

do your own research, but make sure you understand what you're reading, so ask doctors, plural, get more than one opinion, as to what your symptoms may mean. again, i'm NOT any sort of expert on this subject, but some of the questions you have i've already had to ask. do you understand what exactly you were told? after you've had time to deal with it go try and talk to the dr again. i think if you've had these symptoms this long the mri's are maybe just a precaution.

i'm not sure of the quality of the hospital you went to, but i'd suggest doing some research about the best one in the area (just how broad the area is up to you). it shouldn't be hard, the goods ones usually want to let you know it, and usually just word of mouth. check the neurological staff, the way i figure it the more they have on staff for a certain area, i.e. neurology, the more specialized the staff is, so you may find someone who's had experience in chiari malformations. in my experience, if you know your stuff it takes away a lot of the what if's my crazy imagination likes to come up with. that might help you can understand your fear a lot more and come to terms with it.

here's a good starting point: http://conquerchiari.org/index.htm

i really wish you the best and hope some of this can help.
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I have Chiari, it will be 1 year on 2-19-09 since I had surgery. First don't worry too much about this, yeah it is scary, but you have been living your life this long DO NOT STOP!! The horse back riding I however will have to say be careful. Ask your doctor to be put on diamox, it will help the fluids in your brain flow easier, hence less headaches. Be very happy about not needing surgery at this time. it is a real pain in the neck. lol This may sound crazy but a regular exercise routine will help with the headaches to, it keep oxygen flowing.
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I am trying to learn more about this condition. I was going through my medical records and I saw the Dx of Chiari type I. I have a very complicated story. In August I found out that I had hydrocephalus. Two weeks later, I found out that I also had a cystic mass at the base of my skull (It was on my brain stem). I had to have a craniotomy 4 weeks later. Due to other complications, I had to have 8 additional surgeries over the course of 7 weeks. But my doctor never told me I had Chiari...I only found out from my medical records. Granted, I had other issues going on, but why wouldnt they tell me? I was told however that it was rather urgent that I have surgery.

BTW, I had it done at Duke.
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I think each person you talk to their story will be different. I am 34 yr old mother of two. I got told fall of 07' that I had a chiari malformation level I that hangs down 13mm , but i also have a peneal cyst that is 1.5mm that is in the middle of my brain.. After seeking advice from two different DR's in Georgia and being told if I did not have it fixed I would no longer walk by myself b/c the malformation was cutting the flow of spinal fluid off to my body. When ever I would sneeze, cough, laugh, turn my head to the side, or get excited I would have black out symptoms. I finally had my surgery 2/16/2009. I was in surgery for almost 4hrs, in ICU for 4 days and in a regular room 5 more days. My incision is about 7inches long.. I am about 3 weeks out I still have bad days and good days.I have no idea when I will be able to go back to work b/c the is no light duty or part time at my job. I go back to the Dr in about 2wks. I really hope this fixes my problems b/c I do not know if I can go through having my cyst fixed. Ask your Dr how big your chiari malformation is... BUT DO NOT STOP LIVING YOUR LIFE. THERE IS NO TELLING HOW LONG YOU HAVE HAD THIS AND DID NOT EVEN KNOW IT .......
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My 17 year old dau. was just told she has a 5mm chiari malformation, I look at her medical record from 1998 and it was a 4mm. Doctors never said a word, now they are telling us about chiari malformation, this was also done at Duke Medical Center.
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I am 49 year old female and was diagnosed with Chiari I Malformation In Mar 09 with cerebral tonsils measuring 7-9mm. I had been experiencing weakness and swelling of my right forearm, leg pain, headaches and some right side numbness. I had arm surgery on my right arm in Oct 08 to remove a ligament and when the symptoms did not improve the surgery order a C-Spine MRI which lead to the MRI of the Brain. I underwent surgery for the crainectomy and laminectomy on May 1, 09 which went very well. I was able to be released from the hospital on May 3, and truly the worst part was the IV before surgery and the constant morphine drip. I noticed some immediate improvement but it's been slow since. I think since everything went so well in the beginning I expected my full recovery to go just as quickly. I have not returned to work and will not see the doctor again until June 23, 09. My surgery was in Methodist Hospital, San Antonio Texas under Dr. Karl Swann.
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My 18 old dau. was just told 3 weeks ago she had Chairi 1 and yesterday we scheduled her surgery for the 10th of Nov. What is hard and scary is she is also a div 1 soccer player on a soccer scholarship. She is so scared her soccer playing days are over.. Also the thought of her losing her hair and being in college also does not tickle. Her anyone else have this surgery and returned to a high level sport?
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I'm a 20 year old astronaut cowboy millionaire DJ and I'm still able to do all of those things lol.

But seriously I've just turned 20 had no symptoms ever but a week after my birthday I just got very sick and we decided I should see a doctor I had been vomitting heavily was very unstable and dizzy and my left arm was numb like as if you woke up having slept on it all night etc.

Anyway what started out as a possible ear infection turned out to be a Chiari Type 1 malformation so the friday of that week I had surgery to be honest I was not worried at all because the way I saw it was I wanted fixing as soon as possible by any means and this was it.

So it's been a month and 3 days since the surgery and i'm better but still not uber (great/excellent).

At this moment I still have double vision although very mild and it's not quite double it's more like stacked e.g if I look at someone out the corner of my left eye they appear to have a overlapping ghost coming out of them so another set of eyes in their forhead etc.

I'm wearing an eye patch over my left eye and my only concern is people don't go look that poor young man has lost an eye lol.

I also still have a numbness in my left arm though I'm not having spasmodic movements out of my control like I had before surgery.

I'm holding my food down more consistently but I still occasionally feel ill especially when I get hiccups which were painful at first but milder now.

I have a long way to go retraining my body and getting my balance back etc but I'm looking at the positives.

Parents at beck and call
Lots of lazing around in bed
Playing video games
watching tv and movies
Lots of tasty snacks and treats
No work or lectures

so it's not all bad your daughter shoul be looking forward to it lol as for the hair thing there is no reason why they would shave it all off if anything wear it up then after where it down to cover it.

There is basicly nothing to cover anyway my hair has almost grown over the area completely (I had it cut relatively short days before I became ill)

As for the soccer thing firstly it is called football :p you cannot take an existing sport and change the name even if you already have a sport you call football which is actually a wussier version of another sport called rugby lol you americans and your name changes.

Seriously though she will be able to play again I would think though I myself get tired easily at the moment that will pass as I move around more and get my strength back.
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what dr. did you see in GA?
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Hello everyone
I am a 20 y/o female. I have been recently told that I have a Chiari 1 malformation. Since I got my results, i have no been able to get in to speak with my neurologist, so I dont really have a lot of information. All i have so far is what I can gather from the internet and these pots. I am very scared! for the past few months I have been having horrible pain/pressure in my ears/jaw/face and non stop pressure under my chin and in my throat. The Chiari was found by accident while trying to figure out all of these problems. Do these symptoms soundl ike they would be coming from the Chiari? Also, I am a atv/dirtbike racer. I am afraid that this disease may put a stop to my racing... does anyone know.. do physical activities affect the Chiari? Am i thinking too far ahead? I would really appreciate someone giving me answers if you have any. I am waiting to see the neuro but i really dont like waiting! especially now!
Thanks to anyone who responds!

Jenn
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hi jenn, i too have acm1. i was told this when i completed an mri sept 7th 2010. have you had the surgery yet? i have a specialist here in colorado by the name of dr john oro, who i will be speaking to soon. i have daily migranes and neck is really messed up. i have researched this acm for awhile, and at onetime decided to not take the route of surgery, but then i read the horror stories of folks that didnot take that chance and ended in a wheelchair, and i don't want to go out like that. i hope you can keep in contact with me, i don't know when you will be on this site again.
take care
stephanie
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Hi, My name is Kayla Reading and i am 25 years old. About 20 years ago I was diagnosed with Arnold-Chiari Malformation...which over the years has just been called Chiari Malformation. Back then they didn't know a lot about Chiari Malformation, but i recommend if you have questions to contact Dr. Oro who is now located in Colorado or Diane Mueller, they are excellent resources.
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HEY THERE KAYLA, I HAD MY SURGERY DONE WITH DR. ORO ON MARCH 3 OF THIS YEAR, I AM SO HAPPY THAT I GOT A DOCTOR THAT I REALLY LIKE, AND CARES ABOUT MY SITUATION. I HAVE FAMILY SUPPORT AND THAT HELPS ALOT. DON'T BE SCARED, THERE IS ALOT OF US WHO HAVE BEEN THRU WHAT YOUR GOING THRU NOW. I LIVE IN COLORADO, AND ITS GREAT WHEN YOU HAVE A SPECIALIST THAT HAS HIS BUSINESS A FEW MINUTES AWAY..
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jenn07, you may have to give up your dirtbike atv machines...it can damage your head and neck worse if you happen to have an accident. and when you, if you have surgery, then they will tell you your limits, and you may just be mad......
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