Update on Chiari diagnosis...

[catkline]

Hi ladies,
I wanted to give you an update on my Chiari diagnosis.
On 2/21 I had my first appt with the Neurosurgeon.  We went over my Brain MRI and he did some basic neurological tests on me.  He felt that a 8.7mm chiari (measured on an angle) was not enough to warrant him to do surgery but felt a Neurologist may find something else.  He sent me off so I can play guinea pig to him for a little while.
March 4th I had my first appt with the Neurologist.  We sat and talked and reviewed my Brain MRI.  Measuring up and down, my chiari is 15.6mm long.  He did some basic neurological tests on me and found that my reflexes in my legs were very powerful…not how they should be.  He was leaning towards the Chiari but is going to first treat this as a migraine/headache issue.  He put me on one headache medicine which made my head worse so I had to stop that.
In the meantime, I called my family pcp and told him I wanted to get another opinion.  He said he didn’t want to send me to someone who is going to be knife happy.  He would send me to another Neurologist but not a NS.  WTH!!!
March 7th I had two additional MRI’s done on my neck and spine.  I received a call from the Neurosurgeon that everything they were looking for on those MRI’s were normal…no syrinx, no nerve damage, “no surgery”.  
I was in to see the Neurologist on Tuesday, 2/15 and I will be starting an IV medication called HVE-45 on Friday 3/18.  After a few doses over the weekend we will find out if it’s working or not.
He also put me on a headache medication called Depakote but there’s no proof that this med helps with migraine headaches.  .  Read up on both…pretty intense stuff  I’m telling you, the pain is in the back of my head where the chiari is.  This testing for a headache is BS but I’ll follow through to show them it’s not what is causing my problem.  If it is, great, then I can get on with my life.   I’m sick of sitting still for the past 4 months.   I do not have the quality of life I had 4 months ago and I want it back.  I also have to see a Psychiatrist because he wants me to get on meds that will work for me, not just help me deal with things.  I’m so down right now I could scream and when I feel the intense headaches come on, I could shoot myself!   Uggg!  Very, very frustrating!

[selmaS]

  Hi...I know how u r feeling, this is a very frustrating process find the right drs to dx and offer help...but, let me caution u...u may never be like u were b4....once chiari symptoms start, it is almost certain that u will have residual issues post op if not more so......too many think surgery is a fix or a cure and there is no cure.This option is to help prevent the condition from getting worse and possibly causing perm nerve damage.

U deff need a true chiari specialist...but keep an open mind to the possibility that u may have to deal with things in a new way going forward.

  "selma"

[Sweetheartsluv]

Hi Catkline,

Pam is right we all seem to be given the run around at first or even misdiagnosed several times... I just went to the Chiari Institute this past week and met with Dr. B and he was fabulous! I am approved for to schedule my surgery asap. What a difference seeing a dr who understands your problem compared to dr's who keep trying to dx other problems when your problem is staring them right in the face. If it is with in reason I recommend TCI or a true Chiari specialist.

Good Luck,
Krista :)

[pamk5]

Hello.  You are going thru what most of us have to go thru.  We call it the royal chiari runaround.  Does your insurance make you get a referral?  If not you dont need one to pick a specialist from the list here in the forum and make an appt.  I havent heard of any chiari specialists making you have a referral.  It is not uncommon for them to insist that Chiari cant cause symptoms.  Until you get to NS that specializes in CM your symptoms more than likely will not validated.  Gather your scans and make that appt sooner than later. Going from NS to NL that doesnt understand is frustrating and sad.  Be aware you may have to travel. Most of us do. One of the NL's that I saw wanted to put me on Depakote too and I refused to take it based on the side effects.  I am not familiar with the IV med you are going to be taking.  Alot of us with Chiari tend to have alot of drug sensitivities and allergies.  It is not fun being a guinea pig when the problem is staring them in the face and they refuse to acknowledge it.  

I hope this helps.
Pam