another chiari diagnosis joining up

[john003]

Hi,
I found this forum a while back while searching for chiari information and figured i would join up as i have been diagnosed with this. A little back story and ill get along to my questions...

Since growing into an adult (i am 34, today is my birthday) i have had balance and coordination problems, vertigo, occasional dizziness, and problems with my ears. I never thought much of the problems or even that they could be related, but then about a year ago i started having headaches. They would come and go, but never really go away completely. They seemed to get progressively worse so i decided i better see a doctor.

The doctor put me on various migraine and stress headache medications, with little to no success in controlling them. I was then put in for a CT scan, which revealed what they called an "abnormality". A follow up MRI confirmed the chiari.

I met with a neurosurgeon who has been doing chiari for quite a while and i was very impressed with his knowledge and explaining things in a way i could understand them. He told me that my chiari is 27mm in length, and my spinal cord is very crowded. After speaking with him of the risks and benefits i believe i want to go ahead with the surgery. He wants to run another MRI to rule out any syrinx, if i remember that word correctly.

He told me that after the surgery can be fairly painful and i am worried about that. I have two kids. One is 10 and the other is a couple months shy of 2. I am worried about long recovery times and being out of work for a long time. Hopefully everything will go well and i will have a speedy recovery.

Sorry for the long winded first post but i wanted to share my story and let you all know that theres another joining the ranks. I will continue to read up on these forums as i have found them to be very informational. It helps knowing there are others like me out there that can share their wisdom for others to read.

[bearzy18]

Hello John,
So are you going to go forward with the surgery?  I am similar to you in a new diagnosis and have had two NS tell me to schedule surgery.   My chiari is 15mm.  Neither doc needs more than the one MRI I had done to make this call.  I am fearful of recovery as I have a 1 & 3 yr old and I small company I run solely on my own. I am interested in how you make your decision...thanks! Erin

[selmaS]

  No worries ...I wanted to suggest u request copies of ur MRI along with copies of the report, u do this when u sign in for testing, if I posted this too late....but u can always call the facility that did the studies to request copies.

Good Luck

[john003]

Thanks for the welcomes guys (I think, lol). Selma I do remember the surgeon saying csf so I believe you are right on that one. I go in for the MRI tomorrow to check for existence of syrinx. Hopefully Ill know more later in the week.
Thanks again for the great advice and words of wisdom/encouragement!

[selmaS]

  Hi and welcome to the Chiari forum.

Happy Belated Birthday !!

I am glad u found a well informed Dr already....so many of us have to go to quite a few to find one that knows and accepts that chiari can be an issue.

And I pray this Dr feels u need surgery bcuz ur CINE MRI showed a CSF obstruction....and not bcuz ur herniation is a long one....ruling out a syrinx is great as they can form in the cervical, thoracic and lumbar spine.By doing MRI's of each area it helps rule out disk issues and tethered cord too... U should also rule out ALL related conditions like sleep apnea,ICP, POTS,. ehlers-danlos, even low levels of vitamins as they can affect us. So many with Chiari also have auto immune and connective tissue disorders
so it is good to rule out thyroid issues as well.

Keep us posted.

[frankie_rush]

Hello and welcome,

I am gald you rare feeling comportable with us.  I felt the same way when I found this forum.  Everyone here is wonderful.  Glad to have you.  Talk later got to run