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nsaira
@nsaira

Posts: 9
Joined: Jul 07, 2011

Chiari Malformation

Posted by @nsaira, Jul 7, 2011

Hi,

I just got diagnosed with Chiari Malformation type 1. I get severe headaches if I do anything strenuous. Liked to know someone with my syptoms and how you are all handling it?

Thank you,
Naureen

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atozmama
@atozmama

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Joined: Jul 08, 2011
Posted by @atozmama, Jul 8, 2011

My 5 yo son has this. It was diagnosed when he was 4 because he was having headaches. They were getting very severe and relieved with laying down. When the headaches became daily and a nurologist refused to give us medication for them, we scheduled surgery. That was 7 weeks ago. He did really well, even after getting the chemical menegitis. he has only had 5 headaches since we got home from the hospital and they were shorter and less severe than before surgery. We were told it can take 6 months to fully heal from surgery and see how things would heal.


Sandischiari
@sandischiari

Posts: 3
Joined: Jan 13, 2012
Posted by @sandischiari, Jan 16, 2012

That must have been so hard for you. I have a 5 yr. old grandaughter, and I am glad I have the chiari rather than her. But i am still a big baby when it comes to the surgery. But as my symptoms are increasing more every day, i know that surgery is probably inevitable. I am so glad that your son is doing well!

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nsaira
@nsaira

Posts: 9
Joined: Jul 07, 2011
Posted by @nsaira, Jul 8, 2011

Wow! He is s trooper. Best of luck to you and your son. Yeah, I didn’t even know this this until couple weeks ago. Headaches are pretty bad. I have an appointment with the surgeon end of this month to consult. But my neurologist said surgery is the only option. So did they operate right near the back of his neck? All the information on the web looks like there’s no other way to fix this other than surgery.


degruy5
@degruy5

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Joined: Jul 08, 2011
Posted by @degruy5, Jul 8, 2011

my daughter, whom i just added due to pancreas issues, was dx’d and had surgery for chiari and tethered cord. she was seen in NY at chiair institute, but now see’s a doc at Uva, Jon Jane jr. . She is fused thru C6 for stability purpose.

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Elizabeth Rice
@elizabethrice

Posts: 28
Joined: Feb 08, 2011
Posted by @elizabethrice, Jul 12, 2011

For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.


nsaira
@nsaira

Posts: 9
Joined: Jul 07, 2011
Posted by @nsaira, Jul 12, 2011

Thank you!


Sandischiari
@sandischiari

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Joined: Jan 13, 2012
Posted by @sandischiari, Jan 16, 2012

Do you know how much surgery is done at Jacksonville, FL? That was where I was diagnosed last year with a Chiari 1, 6 mm. I am not sure how many surgeries had been done there, but it is the closest hospital to me here in TN.


Unwood
@unwood

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Joined: Mar 04, 2013
Posted by @unwood, Mar 4, 2013

I want to know this also.


Unwood
@unwood

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Joined: Mar 04, 2013
Posted by @unwood, Mar 4, 2013

Which location
treats Chiari. Does Jacksonville do posterior decompression surgery


Elizabeth Rice
@elizabethrice

Posts: 28
Joined: Feb 08, 2011
Posted by @elizabethrice, Mar 5, 2013

Yes, all three Mayo Clinic campuses offer this surgery for chiari malformation in adults. Chiari malformation in children is also treated at the Mayo Clinic location in Rochester, Minn. Click on the button above if you’d like to request an appointment. Thanks.


Elizabeth Rice
@elizabethrice

Posts: 28
Joined: Feb 08, 2011
Posted by @elizabethrice, Mar 5, 2013

Neurosurgeons at the Mayo Clinic campus in Jacksonville, FL perform 20-25+ posterior foramen magnum decompression surgeries for chiari malformation each year.


Unwood
@unwood

Posts: 3
Joined: Mar 04, 2013
Posted by @unwood, Apr 17, 2013

Can you tell me the Doctors names that do the surgery. I saw Reimer but need to wait I am only 6mm. I need a Chiari neuroligst for maintiance


manditalita
@manditalita

Posts: 1
Joined: Aug 09, 2011
Posted by @manditalita, Aug 9, 2011

Hey Naureen,
I am a zipper head myself. 🙂 I was dx with Chairi Malf type I almost four years ago. I know there is alot of info about tethered cord and children with Chiair but not as much about adults and Type I.
When I found out my dx I freaked out and scoured the internet for answers. Much of what I found was terrifing and brought me to tears. I was a healthy active 20 something who doesn’t even have allergies. I couldn’t understand why I had this. If you are having any feelings like this, know that it is all going to be ok. It may even be great! See now that you know what is wrong you can work on “fixing” and managing it. You don’t have to hurt all the time and suffer the headaches. While there is no “cure”, there are many treatment options. First you have to de-stress because stress is your bigest nemisis. Stress will make the muscles in your head, neck and back tense and squeeze your brain stem and nerves and in some cases cut down your CSF flow. All these things cause pain and headaches. For me I had additional symptoms; temporary paralyisis, severe constant pain, headaches, speech and cognitive issues. Set up an appointment with a nuerologist and maybe a consult with a neurosurgon to review your options for medications or surg.
I had head neck and “brain” surg just over three years ago and many of my symptoms have subsided and only on a few occasions have they bothered me since. Your pain tolerence will increase and you will become stronger and this will help you cope with your symptoms. I’m not pain free but with practice, it is managable now with out meds. I am back to being active and living a happy full life.
-Manda

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nsaira
@nsaira

Posts: 9
Joined: Jul 07, 2011
Posted by @nsaira, Aug 9, 2011

Hey Manda,

Thank you so much for your information. I am getting severe headaches recently but with no other complications yet. I’ve heard that you can get paralysis and vision problems as well. I have made an appointment with a neurologist at Mayo in AZ in October( couldn’t get an earlier appt.) I have seen a neurologist and a neuro surgeon and the neurologist said I needed the surgery but the surgeon wasn’t a Chiari expert so he said I should try other options. That’s why I am going to get another opinion from another doctor.

I am having headaches everyday now and no medicines work for me. If I lay down and when i sleep I feel a little afterwards but the headaches usually come back.

I am going to have the surgery anyway, so it’s just matter of time when my surgeon schedules it.

Thank you again for your message. Take care.
Naureen


maddy32
@maddy32

Posts: 2
Joined: Nov 08, 2011
Posted by @maddy32, Nov 10, 2011

I had the posterior decompression surgery 2 1/1 years ago. Still looking for relief.
They had to remove a very large portion of skull and patch with surgical bovine.
I also had the syrinx that can be a complication where the spinal fluid was leaking
out. Took almost 4 years to figure out what was wrong with me. Now I am still in
pain and dealing with the nerve damage caused. Had surgery in Oregon after 9 months of complaining of constant pain was sent to Mayo to be checked, they
said it looked like surgery was successful. That was over a year ago, still in
phys. therapy and also on 9 med’s. The worst part is the head and neck pain
are still here. Local neurologist wants to inject botox into main nerve at back of
skull….I am looking for any information from anyone who has had this done. I am
nervous about this option, but also tired of taking all these pills especially since
I am in so much pain anyway. If you know of any info on this please
share. thanks ! Maddy32

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