What to do next?

[junebug84]

I have recently been diagnosed with chiari malformation type 1.  I have a 7mm herniation.  I was referred to a neurologist because of the headaches I have been having.  The neurologist said that there was no connection between the headaches and the chiari.  I also took in a list of other symptoms I have been having and he basically just ignored me and told me that chiari is "no big deal".  Currently I am in my eleventh day of non-stop vertigo.  I have been experiencing alot of the symptoms associated with chiari since I was 16.  I do not know where to go from here to get help.  My doctors seem to not take me seriously.  

[junebug84]

Thank you!  

[linnielou232]

Welcome to our Chairan family and you have found a great site for answers and directions.  I was in the same sisuation as you and I had someone on here help me by telling me you are the advocate of your own body and you have to be persistant to your problems otherwise we are blown off.  It took me going to 3 NS before finally finding one that listened and explained this circumstances to me.  Your Chairi doesn't matter on the size it is the width that is important, and it stops the flow of your spinal fluid to your brain.  This is what causes all the fog, pressure, all that you have mentioned.  Please don't give up and be persistant and you will find the answers you deserve.  The Charian run-around is the most flustrating part that many of us have experieced.  I was beginning to think I was crazy, but I knew I wasn't and I'm so thankful I had this forum to lead me in the right direction.  Wishing you the best on your journey and want to let you know your not alone with this.
Linda :)

[RheaAnn]

Those symptoms all sound like classic Chiari in my opinion. I'm not sure about the burning skin personally, but members here have reported that. visual problems are common and so are the cognitive issues as memory, brain fog and even fatigue. I think I know what you mean by the brain shaking. I used to feel like my brain was bouncing around in my head if I was moving. That symptom of mine was caused by CSF obstruction.

A CINE MRI can tell if CSF is obstructed and a lumbar and cervical MRI should rule out tether cord syndrome or syrinx. Those tests will show a bigger picture of what is going on, so I suggest you see a Chiari specialist!

[junebug84]

Thank you.  I am so happy to know that I am not alone and others are going through and have been through similar situations.

My symptoms are headache, dizziness/vertigo, neck pain, difficulty swallowing.  I also have some symptoms that I am not sure if they are related to chiari or not.  They are burning skin, visual auras, brain fog, eye and face pain, fatigue, forgetfulness, and as strange as it may sound I feel as though at times my brain is shaking.  I first started getting symptoms at age 16, I am currently 28.  The only tests that I have had are blood work up and a MRI of my brain.  I have had no test for CSF.  I did go to a ENT in 2006 and was diagnosed with unspecified vertigo.  

[RheaAnn]

I feel you on your experience! I was 14 when I was diagnosed and my doctor told me the same thing! I went to 5 more neurologists to find one that agreed that my symptoms came from Chairi. I was 20! I can tell you not to lose hope! You are the expert of your body and you know how you feel more than anyone else. I would suggest you get some tests that can show if there is anything else going on. Had you already? What symptoms do you have? Also, a NL cannot make the determination of Chiari playing a role in symptoms if they do not have all the evidence to prove otherwise. So if they do not know if your CSF is obstructed, for example, they are guessing solely based on the size of your herniation perhaps. There is evidence that shows that the size of the herniation alone is not a determining factor of symptoms or not. You are not alone! We are here for you!
Rhea

[junebug84]

Thank you!

[selmaS]

Hi and welcome to the Chiari forum.

We do have a list of Drs for u to use to research Drs...as the list is not a referral but u do need a Chiari specialist...too many Drs do not feel Chiari can affect us...one day one of them  or a loved one will have it then they may change their mind until then u have to go with a true Chiari specialist.

http://www.medhelp.org/health_pages/list?cid=186