My 16-year-old Daughter Was Diagnosed With Type I Chiari's Malformation....

....just last week.  she's been suffering from migraines (bunches of dif. kinds) for most of her life, ever since she was little.  migraines run in our family. i've had terrible ones for years.  about a month ago, she started having them WAY too frequently...everyday.  PLUS, they were accompanies with a numbness that travelled up her right arm and the right side of her face.  i've had at least one migraine with symptoms like these so i wasn't that worried, at first.  but, then she was having numbness, like every other day...then every day...and finally, the numbness/dizziness stayed non-stop.  the first day it did that (about a month ago) i took her to the emergency room to make sure she wasn't having a stroke.  i already had an appt. scheduled with a really great pediatric neurologist but, i took her to the er anyway.  she wasn't having a stroke.  we kept the appt with the neurologist and she had an MRI/MAR.

so, last week, the neurologist's nurse called to tell me that her MRI results were "not normal."  okay.  that scared the **** out of me.  but, not half as much as hearing her say, "She has a condition called Chiari's (kee-ar-ee's) Malformation, named after the doctor who 'discovered' it."  She went on to describe the "condition:"  Apparently, for some unknown reason, the person's brain actually "slides" down into the spinal canal...through the opening in the skull that houses the spinal cord.  HOLY COW!! "That doesn't sound very good," I said to her.  "I know, it really doesn't.  But, it's actually pretty common and your daughter's 'sliding' isn't that bad.  The minimum amount of sliding downward (to be diagnosed with this condiiton) is 5-8 ml. and your daughter's is at 5-6.  I promise:  it's nothing that you need to be losing sleep over.  If it was serious, we would tell you." 

i was pretty scared for a couple days.  i've been doing research but, (OF COURSE) they don't know near as much as they should...we're talking about the friggin BRAIN, here!

So, if there's anyone out there who suffers from this condiiton or knows someone who does...any information you would like to share with me would be greatly appreciated!!!

MysticWriter MysticWriter
36-40, F
9 Responses Mar 17, 2007

i will be a clinical doctor next year,but the disease your dauter had is not familliar to me. Today i met to the first one of the disease like your dauter. My director suggested it was helpfull for the patient to have a operation,and it will be not complicate

Im 14 years old . Living in Victoria , Australia . I was recently diagnosed with Chiari Malformation. Through the process of finding out i had this condition i had symptoms of Numbnees on the back of my right hand , up my right arm and under my right sholder/ my armpit.<br />
I also had headaches/Miargrains that would last days or even weeks . Before i found out i had Chiari, Early in December 2008, I was playing Dodgeball in sport at school. I was hit in the back of the head by the ball and my head went forward so fast it felt like it broken my neck or somthing. For days after this injury i couldnt play sport or even jog because the was so much pain everytime ide bend down it felt like an elctric shock went up my back and ide feel sick for a few mintues then it would go away. After a few weeks i asked my mother to take me to our family GP. When we got to the doctors we found out he was away so we went to see another doctor who i believe was scottish. She told me that it was a muscel sprain and it would go away in a few weeks. I knew it was somthing more than that but desided to let it go. After months of pain and getting bad headaches i couldnt take it anymore. I devoloped the numbness and shocking pain up and down my right arm and back worsend by sneezing or coughing. So i went to my GP who was available this time and he told me to go to the Emergency room and the childrens hospital as my familys history could be apart of what it mught be (Mother has Multiple sclerosis , Dad and Brother have Neurofibromatosis) after having Xrays and blood test and waiting for 14 hours in the er i was sent home waiting for an MRI to be done the next week. The MRI was supposed to be of my spine but when they realised somthing was rong they did another MRI of My brain and having a contrast. In two days the nurosurgion rang my mum while i was at school and told her there was an abnormality in the scans and that part of my brain was literally sticking out my skull heading down into my spine . They said i needed to go into hospital the next day . So when my mum picked me up after school she said told what was wrong and that my brain was sticking out a whole in my skull 13mm ( i know i was shocked too). The next day i went to see the nurosurgeon (who was my brothers nurosurgeon when he had his op) She told me that i needed to have it fixed where they would Take part of my skull away and replace it with a tissue graft. They said they would also have to take C1 away to let it have more room to heal and for the flued that was getting caught in where my spine was , let it start moving again. I was supposed to have this 5 hour operation the next week (wednesday) But when i got to the operating theater my temperature was 49 so hey had to cancell it because there where some riscks i was coming down with something. I was Schedualed to have The opperation in another two weeks time. The day before i was going in it was cancelled again due some emergencys they had to deal with. After another week i finally had the surgery , It went very successfull, But the morphine for the pain made me throw up alot untlil they disided to take me off it. After 5 days of being in hospital having Physio , i was sent home to recover more. It has now been a mounth and im doing great. No more Shocking pain but i still have the numbness with a bit of a tingly sensation which is good i guess. Finding out i had/have Chiari Malformation has changed my life completely. Its made me wonder what would have happend if they didnt find it? what it would lead to? i could have gotten more symptoms or even get paralysis and become paralized. So if you have Symptoms of anything like numbness or weakness in ur body, Shooting pain agrrivated my coughing or sneezing i advise you to go to Your GP before it could be too late. Im glade i found it as a teenager and not in later life. Now i can live life to the fulest noing i concured Chiari Malformation . Going through this was tough at times . I was off school for three mounths. Couldnt do sports for a long time. My role model through this stage in my life has got to be nick jonas. As he has diabetes , he hasnt let it slow him down. Im not going to let Chiari Malformation slow me down.I support Chiari Malformation, Do you?

I have chiari and have had the decompression surgery to relieve this problems it is safe if you go to a nuerosurgeon who has done these before no surgery is without risks though. I have remained without migranes for 3 years now but becsause I was not diagnoisised until I was 46 I have other problems. Since the surgery my other sibling have been tested and a sister has had the surgery too. migranes have been in my family for years. There are many sites on the net that will help you but one of the best is MySpace and there are alot of Mothers with children on there too.<br />
If you need to contact me please do, but it is a safe surgery and I recommend it...

Many times Chiari patients are treated for migranes when they are in fact not migranes at all, it is Chiari. There really is no such thing as a Chiari malformation being not "bad enough". I can not stress enough....seek a Chiari specialist!!!! Don't go to a regular Dr, NS or pain specialist. Chiari is a highly specialized area. Run don't walk. www.asap.org is a great place to seek information.<br />
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There is danger in putting off surgery. Especially the longer you have a Chiari that perhaps continues to develop. It is called permanant damage to your spinal cord. Spinal cord fluid can form a sprinix which is a "bubble" within your spinal cord. Surgery will not reverse the damage. And only a full spinal MRI can determine if this condition exist.<br />
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Again, seek a Chiari specialist. When you are in your 40's and no longer able to walk, you will have wished that you had.<br />
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Trust me.....I do not speak of things that I do not know...

I would like everyone who reads this to know something VERY important:: my daughter was able to find long-term relief from all of her symptoms with Reiki treatments. it was AWESOME and i have been SO grateful!! a HUGE local hospital in the big city i live inrecently approved a $1 million budget to investigate the health benefits of Reiki. We told my daughter's neurologist about the positive results she'd had and i was amazed that she was actually RECEPTIVE to it!! in fact, she made a point to let me know that she would advise other patients to look into it.<br />
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it goes without saying that i HIGHLY recommend these treatments for a TON of stuff.

I have a Chiari malformation as well. I am 25 and have suffer from the same migraine problem as your daughter since I was a teenager. It eventually has gotten bad enough that I started seeing a pain management specialist because the pain in my head was unbearable. The deal basically is, it depends on the amount of symptoms from the malformation as to whether they will need to have surgery, as well as if it is blocking cerebral spinal fluid from flowing normally. I am holding off for as long as I can, and using a pain patch to help with the pain. If you want to see a specialist, you should see a neurosurgeon. If you go to a neurologist, they will just refer you to a neurosurgeon.

I am 27 years old and like your daughter suffer from constant headaches, the doctor even tried beta blockers before they found out 2 months ago that I had Chiari, I am due to see the neurosurgeon in 2 weeks time. I dont know much more than you but just wanted to let you know that there are others with this condition, your daughters not alone. And I wish her all the best.

My wife had the surgery last year, April 3rd to be exact. For more information please feel free to check out her website at www.devinsdiary.com or my myspace account at www.myspace.com/chris_kalisz<br />
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I am certain that she would love to talk with you about this and try to put you at ease. Our goal is to try and spread awareness about this condition. If you would like please respond to me at chris_kalisz@hotmail.com I will most likely not get back on this site again to check for replies so please feel free to email me.<br />
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Chris

hiari's is a new one for me. Have the doctor's recommended a course of treatment for the symptoms (headaches, numbness, dizzyness)? All I can do from this point is send the same energy I always do, and pray for the two of you. I know this is the last thing anyone needs in their life, but maybe your drive towards health has come at a fortuitous time here. The energy you should be realizing will come in handy for the immediate future. If there's anything else you think we might be able to do, please let us know.