New to the community

[froggity]

Hello Everyone,
I'm new here, but was dx over a year ago with Chiari. I have a 9mm herniation with no syrinx. I'm now in my 30's but have had migraines since early teens. It was by accident that I got my diagnosis; it was my obgyn who sent me to get my mri, but he was looking for something else when we stumbled upon this. That being said my family doctor brushed me off and all my symtoms as did my neurologist. Which I expected after reading this blog for the last year. I was extremely happy to read that I wasn't the only one who suffered from a never ending list of symptoms and was relieved that I wasn't crazy.
I have yet to find a doctor of any practition who believes anything I say or understand the way I feel. I even had to ask the doctor who wrote the mri report to considering taking out the sentece that says 'anything less than a 12mm herniation is asymptomatic' but then says to follow up with a doctor. (lol) I was unsucessful at getting that sentence removed, but I definately told them it was a subjective statement that would make anyone with Chiari say otherwise.  
Anyways my list of symptoms are as followed ;
-A sharp stabbing of little needles or a scrapping sensation inside my scalp that also can make it feel like my scalp is hardening in the center. It makes me want to shave my head because it hurts so bad.
-Memory loss, I have to constantly write everything down, also I can't do numbers.
-Double vision even though I'm blind in my left eye. It's really annoying to get double vision in my right eye lol.
-Loss of hearing in my left ear that comes and goes or a ringing/buzzzing for a few minutes-30 min at a time
-ADHD, I'm completely distracted by everything and anything but I love shiny things. :)
-my neck will feel really heavy and it gets hard to hold it up
-tingling -to loss of feelings in my fingers and/or toes
-headaches to migraines daily, not to mention I can tell you when it's going to rain lol which is often since I live in Fla
-can't find my words or they get jumbled around
-eye pains, and all other sorts of pains from my head to my toes
-dizziness,nausea, and constanting dropping things and a wide range of other things but I can't seem to remeber them

Thank you for letting me share my story with you guys tonight as I'm sure that warm kind reassuring words will come from those who understand the frustrations and annoyances that come with having Chiari.
Sincerly Jenn

[selmaS]

  Hi and welcome to the Chiari forum.

That is a first to see "12 mm asymptomatic"..WOW!!...when a 2mm herniation can cause havoc....

The problem is u r dealing with Drs that are not Chiari specialists and they have no idea how chiari can and will affect  us. There is one down in Miami, and u will have to travel to get to one, they are not as plentiful as those with chiari .....

We do have a Dr list, the list of the members Drs, so they treated chiari, u have to research them to find the right dr for u, the list is NOT a referral , just a means for u to start ur research. See the Health Pages for the List.

I am glad u decided to join us after lurking for a yr....but sorry u had the need to....

    "selma"

[linnielou232]

!st Welcome.  You have come to the right place for support and understanding.  Most of us have went to the experience what you are having now.  I thought through my process before being dx'd that I was going crazy and a dear friend of mine told me.  "You know your not crazy, and you know your body.  Keep being persistant, and you will find the Dr. for you".  Her word's helped me.  Just hearing the new's of Chairi then doing the research is a scary issue, but as we all will say to you.  Your not alone.  Wish you the best and keep us updated.

[froggity]

Thank you Jiggle,
It means a lot to know that even though there are times that I feel like no one gets it, there are people who realize and understand that it's not all in my head. :)

[jiggle93]

Welcome and thank you for sharing your story. I hope this forum will be an endless supply of info for you as you begin to process. I know it has been for me. Yes, we all have frustrations and annoyances, some more than others. Hearing everyone elses daily stories helps me to keep me in check of my daily struggles.  Know you are not alone, and there is always someone here to hear you and support you!
jiggle93