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cerebellar tonsillar ectopia
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cerebellar tonsillar ectopia

Hi Everyone-
I am new to this forum.  I recently had an MRI which concluded that I have cerebellar tonsillar ectopia with the tonsils hanging 6.5mm.  I have intense headaches in both of my temples, and across the back of my head from ear to ear.  I also have pain that shoots down both sides of the back of my neck.  Have any of you felt the same thing?  I go see a neurologist on Monday.   I am a teacher and have no idea how I am going to get through this school year.  Today is the 23 day of these intense headaches.  I have 7 and 9 year ols sons, and feel as if they are suffering aolng with my husband because I am just not myself.  I have bee given a few pain medications and nothing seems to help.  Any suggestions?  I am scared to death!
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Avatar_m_tn
Hi and welcome.
I can understand your fear, this is something we all have in common so understand that you are not alone:)
I would suggest that you find out as much as you can about your condition. The most important thing is to find a Neurologist & Neurosurgeon with Chiari Malformation experience.
You will need to have a CINE MRI to check for CSF obstruction, a full spinal MRI to check for other related problems such as a Syrinx (Syringomyelia).

CM surgery is not a cure, the goal of surgery is to improve quality of life and control symptoms.

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1059090_tn?1254470401
welcome to the site

im sorry to meet on these terms,

i get headaches, but they dont seem intense to me, just always there, i have a 8mm tonsil, i also have neck pain but more light my head is too heavy, and my neck is having trouble holding it up,

i was was told 2yrs ago that i had this, i have been told that it looks like i have early stages of MS, i have been having problems for 14yrs since 17yrs, im now nearly 31, i have 3 kids, one 11, 4 and nearly 3, i got reallly bad to yrs ago and i havent come right, things are just changing, i get alot of weakness, my eyes have gotten worse, and other things, im going for another MRI in a couple of months, so i will see weather it either of them has gotten worse and explain my problems,

its hard for the family bacuse they dont understand whats happening, plus you cant see it so it doesnt look like you have anything wrong. but the good thing is you know what is causing you headaches, so that in its self must be a relief,
on this board you will get great support, ive been on here since nov last yr and its the only place i go for support, i dont get it outside my computer, sad i know, lol

did they discuss weather you are a candiate for surgery? have you seen a surgeon?
what pain relief are you on?

welcome again, and we are here for you

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620923_tn?1405964489
Hi and welcome to the Chiari forum.

First u may want to read some of our Health pages here on MedHelp..there is info on what chiari is, activities to avoid, related conditions and a list of drs that members here r helping to compile. Please note u do need to research drs even tho they r on the list, we do not do background checks, these r nam,es of the drs that threated members here. U need to find a dr u r comfortable with, so the list is a starting place for u to find ur dr.

I am sure we all can relate to how u r feeling as "not urself"...we get short tempered...lost in our pain and our own way of trying to concentrate....

May I ask what symptoms other than HA"s u have experienced?...did u have a fall or were u in a MVA in the last 12 months or so?

Looking back over the past 10 yrs or so, did u have symptoms that u felt were result of some other condition?

We r happy to have u join our little family here, not happy about the reasons u had to seek us out.

"selma"
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1179332_tn?1297482590
Hello and Welcome,

I just wanted to let you know that you are not alone!! I traveled down the same path about a year ago, I had headaches like that for several years and was told that it was just sinuses. Then, in about 3 months, I suffered arm weakness, trouble swallowing and then it started to affect my gait. I could barely walk, I have 3 boys, the youngest at the time was only two. It was soo scary as they thought that I had MS but it was even scarier when I had the MRI and they told me that they couldn't find anything!!! Eventually, I did finally get dx with Chiari and had the surgery within 3 months b/c of the urgency.

What I want to tell you is..though it was scary for my family, they made it through and are stronger for it. I told my sons what was going on but I tried to make seem less than it was, I even sent them to school the day of my surgery. I think this has given them a compassion for people with disabilities that they may never have realized before. I found that my family changed to suit what was going on with me and to tell you the truth, some changes were for the better. My husband became more involved with the kids schools and activities and we ended up spending a lot more time as a family b/c there were many things that I couldn't do alone. I think it has made us stronger b/c we all fought this together and slowly every day I feel like I'm winning..

So the most important thing for you to do now is to advocate for yourself, find a good NS who knows his stuff and don't let anyone push you and your symptoms aside. This is SO important as you know your body and you know when something is wrong.

Good luck to you...you are in my thoughts!

Carolyn
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Avatar_f_tn
Hi,

I had those intense headaches for a solid year before I was diagnosed with CM.  I was told it was only migraines, but none of the migraine meds helped, they only caused horrendous depression, disturbing thoughts and dreams, and more headaches. My severe pain slowly subsided to what is now a dull 24/7 HA.  I know you're scared, so was I.  I have continued to work since the symptoms have become so severe over the last two years, but I have had to miss periodically during the episodes.  I will have the decompression surgery in just a few days (August 20th).  The best advice I can give you, and it might sound strange, but believe it or not, you will get used to functioning with your symptoms until you can get help.  It's difficult and depressing, but you'll have some good days.  I can't give you medical advice, but can tell you that since the migraine meds were a definite "no" for me, I find relief in Excedrin Migraine.  I only take 1 at a time because I spent a solid year staggering Tylenol and Ibuprofen, and I am concerned about liver damage. Try to hang on, get to a Neurosurgeon that specializes in CM. DON'T go to regular Neurologists that have no working knowledge of CM.  They will only discourage you, and misdiagnose you. Fight for help if you have to. Since you're a teacher, we already know you are tough, lol!  As the Word tells us, Be strong and of good courage! We are all here to help and have been through what you are going through, so don't be shy about asking questions.  
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1388357_tn?1280193093
Hi & welcome!  Not to sound redundant, but you are not alone!  I was dx in May of this year, tonsils descending 11mm.  Headaches started in 2002, but I thought they were just hormonal (you know... getting to be 40!).  The severe neck pain started this January, and has spread down in between my shoulder blades with burning sensation.  Tingling in left ear & on left side of face, random tingling/numbness in fingers/toes, and left forearm to mention a few...

In addition to the every day stuff being hard - I feel like the shackles on the feet of my family as far as traveling and summer fun this year, so yes, I feel as you do about the effect on the family.  We will be taking a trip on the 11th, and I hope I can keep up!

My neurologist hasn't been of help (I was actually dx'd at an orthopedic office!)  And my first trip to the NS is - tomorrow!

You will find a wealth of information and support on this site.  I know I have learned TONS, and the people are so warm & understanding.

Good luck with your doctors.

Lisa
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1306714_tn?1327260680
Hi and welcome.

I know how scared you are.  When my doctor diagnosed me and when she said Chairi and I said WHAT?  I didn't understand what it was. It is a very scary thing, but being on this forum you will get a lot of help.  It has been a life saver for me.  My tonsils were 6.5 mm, and I am not a teacher, but I am a lunch lady and I now exactely how you feel.  I went to work every day and when I came home I would be in so much pain I would cry. Which help's alot with the pressure, but I thanked God every day that I made it though.  I dealt with all this pain for a year and for me I just didn't know what do, but I knew I couldn't keep going the way I was.  Finding this site and the information I received it made up my decision and I had the surgery on the 6th of June the day after school was out.  I have had a little set back.  6 week's after my surgery my Dr just had me have an MRI due to water build up in the back of of head.  I have a CSF leak so he has to go back in there and fix the leak Mon the 10th, but I know that after this is done I will be heading for recovery.  As for your family it is very hard.  Being a mother and have such little ones that don't really understand.  I have a grandson, grand  daughter and I was trying to explain it to them.  I told them that Grandma Linnie was so smart my brain doesn't fit in my head LOL.  So I told them they had to go in there and push it back up and put a bandage on it.  My grand babies said. "Grandma Linnie that doesn't sound so bad".  So they kind of understood it a little better.  Us with Chairi do have to learn and it was tough for me is that we have to have people help us just as we have helped our loved one's.  That is what family is all about.  Taking care of each other.  I pray that will get some relief before you have to report to work,  I am also thankful that your a teacher.  I give you a lot of credit.  You already have patient's so this Chairi stuff will work out for you.  
I wish you well.
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1268921_tn?1288922656
Just wanted to say hello--from a fellow teacher (2nd grade), mom of young kids (5 & 2), and a CM 'person'.  This is a great board and you will get lots of information and support.  This is the first group of people who helped me realize that 'cerebellar tonsil herniation' was not an 'incidental finding' and that it had a name--and helped to explain my physical symptoms.  There certainly is a learning curve with Chiari but I feel that, after 4 months, I am getting a hang of it.

Please feel free to send me a message or respond on here--you've found a great support group!!!

Kim
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