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1088046 tn?1272285396

Would love to know your symptoms

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?
32 Responses
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1265199 tn?1271873877
Thanks so much for the encouraging and kind words!  I am praying it is all a coincidence beings that adolesence dx'd with POTS are most likely to out grow it!  But certainly worth having Chiari ruled out.

I am still in amazement about how BIG this abnormality is but how LITTLE doctors are educated about it.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Wow u r so lucky to have found these drs....POTS is a common condition for chiarians to have along with chiari...I do know a few others that have both...and as a chiarian I have come to the conclusion we will have more than just chiari going on.....

Sending prayers for ur DD's tests : )

"selma"
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1179332 tn?1297478990
Wow..I'm glad they are checking your daughter out, I have heard about the link b/w POTS and Chiari as well so I am glad that they are doing that MRI!!

Mothers certainly know best don't they? That is why we ALWAYS should follow our instincts. Thanks for sharing you story :)

Carolyn
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1265199 tn?1271873877

I have not heard of Hashimotos but I had tons of thyroid tests done and all was good.  It is hypo-metabolism and I see an endocrinologist who has successfully treated me for it.  Hmmmm, guess I should call him and tell him about the Chiari.......

So check this out:  my daughter (13 yrds old) got really, really sick last year, spent 10 days in the hospital, almost died and the "specialists" all agreed she suffered from anxiety and just needed a counselor.......(this was a long story and I am condensing waaaaaaay down as to not bore you)  Anyway, me KNOWING my child and KNOWING the only thing making her anxious was her symptoms and them sticking her with needles every chance they got........went outside the state of Georgia.

After much research and great support from her pediatrician (who has know her all her life and  also knew she didnt have anxiety induced symptoms) we went to Wake Forest University School of Medicine, where she was diagnosed (within 10 mins of meeting with associate professor) with P.O.T.S.............!!!!!!!!!!!!!!!!!

I found a link on this site that took me to another site with very detailed explanation of Chiari and guess what?  Chiati can cause POTS and is often heriditary.  Here are my daughters symptoms:

headaches
nausea
dizzy
tightening of her throat
mixed gastric dysrythmias (they found this at Wake Forest)
Flattening of the pontine belly associated with empty sella syndrome (she has enough pituitary tissue that her hormone levels are all normal, it just cannot be detected on a MRI)

All of the above are listed in this article!  

She had an appointment today with this doctor and when we told him of my new diagnosis and similarities, he agrees that it needs to be ruled out.  He is ordering her cerivical MRI and MRI w/ cine as he wants them done there at wake forest beings none of us trust the doctors and diagnostics here in atlanta.  After all the doctors in atlanta that I have seen (tons of them) say Chiari is "nothing"........

In case any are interested and have not read this check this out:

http://www.biomedcentral.com/1471-2474/10/S1/S1#

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1179332 tn?1297478990
I have Hashimotos too and noticed weight gain with it..I assume that you have been checked for that already. I know how frustrating that is...I was working out all the time and getting nowhere...I couldn't figure it out b/c it always worked after having the older two kids.
Like Selma said, the throat thing is def Chiari...I would get that just from speaking too long or loudly, I would actually lose my voice! For me, it is somewhat better since surgery, but I did have an issue with it the other night when I went out and had to speak over some noise.

For working out...weight lifting makes you strain..which can heighten the pressure in your head. Especially shoulder presses etc. that cause you to lift your hands above your head. I also found crunches really bad...everytime I did them I would start to feel really dizzy and feel like I wanted to vomit. I was also a runner and did step class and I think the high impact was thumping my brain against my skull!! Sometimes I would feel weak and nauseated during (but of course would push on) and then sometimes it was afterwards I would get a really pressure feeling headache and I would feel very out of it, couldn't concentrate, kind of in a trance. Keep in mind, I had no idea that I had Chiari at that time....or I would have stopped then and there (my last run I did it limping if you can believe that!). Doing these things and ignoring my body signals caused my symptoms to snowball and greatly affect my legs...so that is why I try and warn others. Being a personal trainer, you may have some insight on how to do these activities so that it won't affect your head. The best thing you can do is monitor how you feel after doing it and it it bothers you, stop.

I am in PT now (post op) and I have found there are many alternative exercises I can do to strengthen my body w/o straining my neck...so you can still keep active!

Carolyn
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620923 tn?1452915648
COMMUNITY LEADER
It is funny how we all found so many of our symptoms are not normal issues or just us by sharing our symptoms here....

I also had a weight gain that I didn't understand and found I have an autoimmune thyroid condition called Hashimoto's...I am sure this played a part in my weight gain...I have yet to lose ne of it .....

I tend to crave sweets at times too....

I wanted to say I had the issue when singing in church and nothing coming out.....and I had an odd feeling in my throat...I haven't had that since my surgery.This is a chiari issue.

As far as exercising....u have to listen to ur body..lifting  and or straining is not advised....I was told swimming was good and there is a type of stationary bike that is good for us too...

         A recumbent bicycle, sometimes called a “bent” is a type of stationary bike
         that is more laid back…literally. It places the body in a semi or fully reclining
         position, taking pressure off the back area.
         Because of the reclining position, a recumbent bike works the abdominal
         muscles more and also creates more hamstring action. The lower center
         of gravity makes for better balance as well.
         The recumbent bikes also bring your feet more closely in line with your heart,
         keeping blood pressure low and providing for a safer overall workout.
Helpful - 0
1265199 tn?1271873877
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)
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
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"
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1179332 tn?1297478990
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
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1265199 tn?1271873877
P.S. the doctors here say that since I dont have the numbness and tingling in extremeties then Chiari is not affecting me...........
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1265199 tn?1271873877
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?

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1041839 tn?1278681846
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!!!
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620923 tn?1452915648
COMMUNITY LEADER
I think we all feel like that...happy to know we r not alone...but would never want neone else to have to deal with this....and Carolyn is soooooooooo right too...if not for the members of this forum, I am not sure where I would be right now either.....my lifeline and  a wonderful addition to my family : )
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1179332 tn?1297478990
I know what you mean...I wouldn't wish this on my worst enemy!! But...if it has to be then we might as well stick together! Not feeling alone was very important to my recovery :) I"m glad that you found us!
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1260487 tn?1269786872
It's good to know I'm not alone.  It's actually terrible, I wish nobody had this but I'm happy to know why now.  
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1179332 tn?1297478990
I know it's crazy isn't it...that is exactly how I felt too when I first came to this forum!! As scary as it is...it is also so validating too!!  Welcome to the group!

Carolyn
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1260487 tn?1269786872
I can not believe what I'm reading.  It's all adding up.  The IBS, sensitivity to light, memory, concentration problems. I actually walk on my tip toes now, don't remember doing that as a child though. Wow....slurred speech at times, not always.  Depth perception problems, depression, TMJ, achilles tendonitis.........I've been treated for the last 2 recently.  This is blowing my mind.
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Avatar universal
I also have a very itchy head. I can just sit and scratch it for hours.
I used to walk weird too. I would walk side to side instead of heal toe. Like literally outside of foot to inside of foot...if tht makes sense...
I also have:
Random spasms
Terrible headaches
Numbness in legs and arms
Dizziness
Sensitive to light
Irritability
Concentration problems
Memory problems
My back pops uncontrollably
I have random feelings where I need to stretch my neck
Loud noises bother me
I hate talking sometimes
Trouble sleeping
Loss of apetite
Eyes hurt
Just an overall mess. I've also had stomach ulcers, asthma, acid reflux, Irritable bowel syndrome, achilles tendonitis, depression, OCD, and a lot others. I hope this helps.
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1088046 tn?1272285396
do you also have tethered cord? Un-empty-able bladder is a common complaint of those with TC, as is bowel problems.
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1179332 tn?1297478990
No I haven't heard of that but sounds like something to try!! Thanks!

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1150700 tn?1288115608
Have you tried coating tongue with Maalox or Mylanta? My son had horrible sores in his mouth and the doctor said it would help with the pain.
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1150700 tn?1288115608
Ditto on the toe walking, scalp itching, depth perception, trouble concentratin (losing my train of thought mid-sentence, trouble finding words, dizziness, headache, neck pain, frequent urination because my bladder NEVER feels empty, falling over when I stand for longer than a few minutes, constant throat drainage, ear ringing and "flapping" sound and pressure, fatigue, dropping things, just clumsy altogether, blue and red spots in my vision, complete vision loss when my head is in certain positions for too long (again more than a few minutes), bowel issues, somedays along with the headache my eyes hurt especailly when they move, and nausea. As I lokk back I can see symptoms began when I was very young so I got older I just assumed it was normal.
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946915 tn?1271941032
Ahha......now I know why my scalp is itching!!!!!  FINALLY!!!  Thank you!!!  =)  And the ankle joint issues....answered!!  

And thanks for posting all your symptoms......I think it so interesting when I find something that is wrong with me that is or could be relate to chiari!!
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1179332 tn?1297478990
NO kidding...something's got to give...I'm glad that you are finding a little bit of comfort in dealing with it anyway... I am currently dousing my burning tongue with water 24/7 trying to try and deal with my newest problem...
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