Aa
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?
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?
COMMUNITY LEADER
Hi...sorry but u r on a never ending venture...as we all will have different symptoms......we do have a general list in the health pages here on MedHelp.( see the thread for links to Health pages)
Most of us do have journals that list all our chiari experiences and symptoms.
Trust me u r not alone.....u may have a symptoms I do not and vise virsa.....I call the book that contains the list of symptoms a manifesto becuz it is so large and continues to grow.
Plus as for today I have something new I am doing....don't know y, but as I eat I keep biting my tounge......
I am happy u r gathering info and I am sure u will find everyone accomodating for support and info.
"selma"
Most of us do have journals that list all our chiari experiences and symptoms.
Trust me u r not alone.....u may have a symptoms I do not and vise virsa.....I call the book that contains the list of symptoms a manifesto becuz it is so large and continues to grow.
Plus as for today I have something new I am doing....don't know y, but as I eat I keep biting my tounge......
I am happy u r gathering info and I am sure u will find everyone accomodating for support and info.
"selma"
I am totally shocked.....I was a chronic tip toe walker as a child!!!! I have never heard of this connection before...I would go through stages of days where I would only walk on my tippy toes and I never knew why. As I got older, I would notice it and try not to but as soon as I wasn't focused on not doing it, I would realize I was doing it again. What scares me about it is that my 2year old is a tip toe walker too....
As most of us, our symptoms need a place on a shelf lol but I will list the major ones:
-headaches- back of head, extreme pressure on top of head, behing my eyes making them burn, always there but would flare up off and on
- severe neck pain, with creepy crawlies along my shoulders, pain would radiate down my shoulders, sparks of pain would shoot down my back
- Limb weakness- all 4 but they seem to take turns! Constantly drop things (weak grip) I have very weak feet & knees they don't want to hold up my legs
- Stiff, spastic gait combined with instable joints
- Black spots, sparkles in vision, sometimes flashes of light, blobs of color, vision splits into two, gets blurry and of course, the ghost images!
- Ears ring constantly!! Gets louder when I feel head pressure, loud noises hurt (reverbrate in my head), sometimes a quiet noise comes out loud in my head and I'm like "what the heck is that" and then I realize it was just a chip bag crinkling
- Vertigo! I will feel like I'm rocking, the room will move around me, when I close my eyes I get the spins, sometimes I feel like someone takes my head and shoves it or I feel like I am diving into the floor
- I've also had some breathing, bowel issues (IBS)
Ok so the list keeps getting longer..so I will stop now! Hope this helps...feel free to ask away!!
As most of us, our symptoms need a place on a shelf lol but I will list the major ones:
-headaches- back of head, extreme pressure on top of head, behing my eyes making them burn, always there but would flare up off and on
- severe neck pain, with creepy crawlies along my shoulders, pain would radiate down my shoulders, sparks of pain would shoot down my back
- Limb weakness- all 4 but they seem to take turns! Constantly drop things (weak grip) I have very weak feet & knees they don't want to hold up my legs
- Stiff, spastic gait combined with instable joints
- Black spots, sparkles in vision, sometimes flashes of light, blobs of color, vision splits into two, gets blurry and of course, the ghost images!
- Ears ring constantly!! Gets louder when I feel head pressure, loud noises hurt (reverbrate in my head), sometimes a quiet noise comes out loud in my head and I'm like "what the heck is that" and then I realize it was just a chip bag crinkling
- Vertigo! I will feel like I'm rocking, the room will move around me, when I close my eyes I get the spins, sometimes I feel like someone takes my head and shoves it or I feel like I am diving into the floor
- I've also had some breathing, bowel issues (IBS)
Ok so the list keeps getting longer..so I will stop now! Hope this helps...feel free to ask away!!
Yeah, that tip toe thing really hit home for me. And there have been others, like the tightness/pain in the jaw and around the ear. It doesn't matter if i have a headache or not, my jaw ALWAYS hurts, and when I'm not feeling well, my daughter knows to massage above, behind, and below the back of my ears. I had no idea that was ACM related until I found it in another article. And "intense itchiness"... I've scratched my scalp raw on many occasions because it feels like it's either tingling or crawling (to the point I had my husband check me for lice!).
some of the things i had going on which surprised me were
my hair folicles actually hurt,and my scalp itched so bad i nearly scratched my scalp off...dizziness,headache,tremors,inability to find words, loss of concentration, loss of understanding, intense need for bathroom suddenly, pains EVERYWHERE, neck,shoulders,jaw,back, tendon (ankles) issues (i read that somewhere), unsteady gate, loss of depth perseption, shaky hands, numb hands/feet, screwy eyes.
jaw pains got so bad id stop eating because of it.
i do have TMJ but didnt know it could be associated to chiari, I too was a toe walker i remember being braced as a child to stop it.
my hair folicles actually hurt,and my scalp itched so bad i nearly scratched my scalp off...dizziness,headache,tremors,inability to find words, loss of concentration, loss of understanding, intense need for bathroom suddenly, pains EVERYWHERE, neck,shoulders,jaw,back, tendon (ankles) issues (i read that somewhere), unsteady gate, loss of depth perseption, shaky hands, numb hands/feet, screwy eyes.
jaw pains got so bad id stop eating because of it.
i do have TMJ but didnt know it could be associated to chiari, I too was a toe walker i remember being braced as a child to stop it.
The depth perception really bothers me. I'll be walking down the stairs, and I can see the stair is just under my foot, but it looks too far away and I stop myself so I don't fall, and almost fall in the process!
And the scalp, I have actually pulled a piece of my scalp up. I freaked out and went to my doctor. They said it was probably a fungus, so gave me meds and shampoo. When that didn't work, they actually looked at my scalp. As it turns out, I've scratched it open, and the oils irritated it... so I scratch it more. This has been going on for almost a year (maybe more, no real sense of time, lol). I've tried the strongest anti-fungal medications available, nothing. I've tried anti-fungal shampoo, no avail. I've tried Psorisis shampoo, dandruff shampoo, oily scalp shampoo... I just can't stop scratching it. and it looks like i have monster dandruff now. The doc (dermatologist) suggested I just stop scratching at it to give it time to heal. Wonderful advise... wish I would have thought of that (end sarcasm).
And I'm with you on the ankles. Up until recently I just thought I must have walked too much or worn the wrong shoes, or set on my legs the wrong way. I find it amazing that even with the Chiari's, I still don't associate many things with it. Sure, the headaches, neck pains, vision problem, and mental issues (cognition, memory, focus, etc)... but the other things, I always write off as something else.
And the scalp, I have actually pulled a piece of my scalp up. I freaked out and went to my doctor. They said it was probably a fungus, so gave me meds and shampoo. When that didn't work, they actually looked at my scalp. As it turns out, I've scratched it open, and the oils irritated it... so I scratch it more. This has been going on for almost a year (maybe more, no real sense of time, lol). I've tried the strongest anti-fungal medications available, nothing. I've tried anti-fungal shampoo, no avail. I've tried Psorisis shampoo, dandruff shampoo, oily scalp shampoo... I just can't stop scratching it. and it looks like i have monster dandruff now. The doc (dermatologist) suggested I just stop scratching at it to give it time to heal. Wonderful advise... wish I would have thought of that (end sarcasm).
And I'm with you on the ankles. Up until recently I just thought I must have walked too much or worn the wrong shoes, or set on my legs the wrong way. I find it amazing that even with the Chiari's, I still don't associate many things with it. Sure, the headaches, neck pains, vision problem, and mental issues (cognition, memory, focus, etc)... but the other things, I always write off as something else.
COMMUNITY LEADER
As I read these I keep thinking I was not a toe walker, but, I did put more weight on teh balls of my feet...that is y I went to the drs in 2000...and they said I had tarsel tunnel....I had surgery to correct it...and wound up with something left inside the ankle.....but the balls of my feet were my issue...and I guess can be considered toe walking to some...but it is something that makes me curious.
I beginning to believe EVERYTHING is related to ACM!! It is strangely comforting in a way~ my first leg problems started in my left ankle it would go stiff and hurt a lot, that still comes and goes now... The scalp thing too, my hair always hurts!! I had that for years along with being itchy...I just can't believe how far back I am starting to track this stuff..
The scalp thing is KILLING me. I finally broke down and drove from pharmacy to pharmacy until I found tar shampoo. So far, it's working like a charm. I could actually wear my hair down today, which I normally don't do because I have flakes from scratching my head raw, and when it's down, I get that crawly feeling again from the hair moving.
Here's to hoping i have one less thing to deal with, lol
Here's to hoping i have one less thing to deal with, lol
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...
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!!
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!!
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.
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.
do you also have tethered cord? Un-empty-able bladder is a common complaint of those with TC, as is bowel problems.
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.
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.
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.
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
Carolyn
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.
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!
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 : )
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!!!
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?
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?
P.S. the doctors here say that since I dont have the numbness and tingling in extremeties then Chiari is not affecting me...........
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
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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