Would love to know your symptoms

[cyberpyxi]

One of the hardest things (besides everything) about having a rare brain malformation is having these strange symptoms and feeling like you're the only one. I would really, REALLY love to hear a list of everyone's symptoms related to Chiari's. Every time I research and read symptom lists, I always find something that I didn't know was a common thread, but makes me feel less alone in this crazy thing. For example, the one that really sticks out here of late is that in one study, most people with ACM had a tendency to walk on their tip-toes when they were younger... that floored me! I was nick-named tippy when I was a kid for that very reason! And then today, I read the thread regarding "weird symptoms", and found even more things that I didn't even associate with Chiari's, but turns out, some of you have as well!
Anyways, I know I have a list a mile long of symptoms that are either Chiari's for sure, or those things that I assume are related. What are yours?

[survivor08]

Thank you for the warm welcome.  It was blowing my mind reading everyone's symptoms, thinking that so many of them I have and have always thought it was just "me".  Especially about how everything goes "black" when I change positions.  No matter how slowly I stand up, 50% of the time I will lose my sight for a few moments.  Sometimes if I have been standing too long in one position the same thing happens.  Not very often but this is new.

I also forgot to list that there are times, when I am talking or singing (I sing in the choir), my throat will start to close up.  I have to stop and mentally relax and take a deep breath to get it to open back up.

Plus in 2002 I was diagnosed with hypo-metabolism!  After tons of doctors and tons of tests, I finally insisted I have a true metabolic study done.  The doctor said ok but that he had never seen anyone with a BMR of less than 1200cal a day..........my BMR came back 892!  I was gaining weight on 1200 cal a day and 2 hour workouts!  That certainly explained it!  Doctor was DUMBFOUNDED (when will they learn to listen to us.....)  He said it had to be caused by something in my CNS since everything else was normal.

Anyway, he put me on meds and the weight fell off and been holding steady ever since.  Now I wonder if this is also tied to Chiari.....

I also CRAVE sweets to the point that I am addicted!  Anyone else?

P.S. to Carolynn is there something I need to know regarding workouts and Chiari?  I have learned I am no suppose to go to a chiropractor (haven't been to one in years)

[selmaS]

HI and welcome to the Chiari forum.....as Carolyn has mentioned u do list typical chiari symptoms.

The issue with the dr saying that chiari is asymptomatic is bcuz they r not educated on how they treat chiari now, most of that info is so outdated....


I understand ur frustration with insurance issues and I did go to TCI in NY for my surgery and I do have many bills that were not covered, but I wanted to go to one of the best facilities for chiari treatment.

There is a chiari dr in Fl...in Miami...Dr Barth Green....u may want to look at his facility.....I am not aware of the insurance policy down there.

We do have a list of chiari  specialists here on the forum.....u may get more of Dr Greens info there...

And keep in mind depending on ur insurance u may b able to get them to cover the costs not  normally are not covered if u can not find treatment that will be covered near ur home.

We r  happy to have u join our little family here, so sorry the reason u had to seek us out.

"selma"

[*Stormy*]

Hello and Welcome to the forum!!

First let me say that I am so sorry to hear that you have gone through so much already and still have to deal with Chiari too!! You are a survivor and I imagine an extremely strong person!!

Your symptoms sound to me like 100% Chiari...most of us get the same old spill...that it's asymptomatic...really what it is is just misinformed NL's!! Pretty much you either have to find the right NS (which I did) or get in to see a Chiari specialist. Looks like you have got that one covered...I am so sorry that your insurance won't cover it..but if there is any way you can keep the appt...it is important to do so. Those dr's are really the only ones that have enough knowledge to really know how the body is affected by Chiari.  Also, they will do all the necessary tests to confirm it. It is so common for dr's to let it keep progressing until there is permanent damage..it just doesn't make sense!!

I understand that you are a personal trainer so weight lifting and running is part of your job...but I really truly feel that is what caused my symptoms to spiral downward..I was having headaches every time I worked out and I would get this really dizzy out of it feeling..it was hard to concentrate enough to drive home from the gym!! Four months later..it progressed to leg involvement..and then I couldn't do anything at all. I don't want to scare you but I do want you to be aware and really keep a check on your symptoms.

I live in Canada so I can't give you any advice on the Mayo Clinic...however from what I have read from others..you are much better going to the TCI if possible. I'm sure that the other members will respond and give you some insight on where to go.

Good luck to you,
Carolyn

[survivor08]

P.S. the doctors here say that since I dont have the numbness and tingling in extremeties then Chiari is not affecting me...........

[survivor08]

I am new to this forum and this is my first post here, so "Hi" to all of you!  :)

I have Chiari 1 malformation.  It was discovered in 2007 on a cervical MRI "5mm tonsillar herniation consistent w/ Chiari 1 Mal" and the radiologist recommended clinical evaluation.  Well my doctor said it was nothing, so I said "ok".  All I know is that I have had back/neck pain for YEARS that has gotten progressively worse.  Repeat MRI in 12/2009 showed "7mm tonsillar herniation consistent w/ Chiari 1"  and I have had 1 neurosurgeon and 1 orthopedic surgeon assure me that it is "nothing".......

Very long story short, I talked with someone who has this and has hed 2 surgeries for it.  As she was telling me her symptoms I said "OMGosh!!!!"  I had no idea these things I feel and/or do, could be because of this herniation!!!!!  Here is what my symptoms have been for YEARS:

-  Life altering neck and upper back pain
-  Continually spasmatic muscles from thoracic up through to base of my skull (muscles stay tight and painful 24/7)
-  lose my sight with position change, sometimes w/ pounding head
-  headaches brought on my running and weight lifting!  (Im a personal trainer and this part of my symptoms JUST started about 6 months ago)
-  Hand freezing cold and even if they aren't cold, I cant STAND to touch anything cold or for them to be exposed to cold air.
-  Strangle on liquids all the time, even my own saliva
-  I'll get an "electric shock" sometimes in my neck and I will jerk and scream thinking someone just shocked me with something (doesnt happen often)
-  Depth perception too!  I cant gauge going up and down stairs either!  (read that one on this thread and thought "i had no idea that was this too!")
-  I constantly bite my tongue, cheek, or lip when I chew.  
-  Wake up with my jaw clenched and "chew marks" inside my cheeks
-  NO short term memory.  Heck if gotten to where I even forget that I DIDN"T forget somthing!
-  Nose runs ALL DAY long.  I need to buy stock in Kleenex.......
- Constantly having to stretch and pop my neck-----all day and night----
- ears ringing and sometimes they roar---but I can hear just fine
- In ability to explain things verbally. I can see it in my mind, I can write it, I can do it, but can not "speak" it!!!!!
- wake up feeling like something is pushing my neck forward and head down.
-  If I drink more than 20 - 30 oz of liquid a day, I pee every 20 - 30 min including all night long
-  Can no longer multi-task and I use to be the QUEEN of multi-tasking

The frustrating thing is in 2008 I was dx'd with cancer and had to go through chemo.  Several of these symptoms have either intensified or started since then and I have attributed them to the chemo cuz doctors in Georgia say "Chiari 1 malformations are asymptomatic"!!!!

I have been accepted into the Chiari Institute in New York and the surgeon has indicated I am likely a surgical candidate.  I say this because He has studied all my tests, but hasnt physically seen me.  He has ordered some more CT's and MRI's and I have an appt on May 5th.  The problem is they have no neurosurgeons at this institute who take my insurance. The hospital does and the neurologist does but the most expensive does not.  My OONB is on 65%!  So I cannot afford to go and will have to cancel this appointment.

Anyone been to Mayo Clinic in Florida?

[shanmomof3]

Ditto to that! Wouldn't wish this on anyone, but its so great to be able to talk to people that understand what you are going through! And i have gotten a lot of great guidance here!!!