Hi...the list we have is for the states here, and does not even cover all of it, as the list is comprised of the members Drs names....
There is a list for the UK, it is the Ann Conroy Trust.....there is a link to that list in the Health Pages...I am not familiar with ne of the Drs on the list nor am I familiar with the org that made the list....
Here is the link ....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569
Thank you for the list, I researched this long ago! as my insurance won't cross state lines I can't go to most of these and it was disheartening to see a post from a Chiari sufferer on this site that lives in Mobile Cheerio767 wrote:Hi. I live in Mobile and was diagnosed in 2000 at 33. Their are no chiari specialists here so curious as to whom you saw. The one neurosurgeon at the *University hospital network does not treat it and said to come back when paralyzed.
Needless to say I wrote back b/c I was floored! I left the name of the one I found on here and hope to find out if they are able to see this Dr. and how they like him! It's crazy that we can't get the care we need because there are no docs around and insurance won't let you go where you need to!
HI and welcome back.
I know what u mean it is very diff and I am one that had to travel out of state to get to a Dr....
That member is no longer an active member, u may want to send a PM as she will receive an e-mail .
I know she has not posted who she did go to or how it turned out.
I get a squiggly line in my left eye sometimes. Like a bad picture tube where the picture is going. it's in the upper left hand corner.
And the incontinence.
When jogging, I run into garbage cans, trees even people, as my spatial sense is off
noise and sensation when laying down that fluid is running in the back of my head
buzzing. sometimes as loud as a bee hive, sometimes barely audible
I am new here and haven't yet been formally diagnosed but after seeing my MRI results and reading up on Chiari I am pretty sure this is what is wrong with me. I have read just the first maybe 15 comments here and already SHOCKED. THIS IS SO ME! I just thought I was weird and didnt like going places or just always felt a little odd now and then or had that weird feeling b/c the doctors always give you that :-/ look when you tell them how you feel. But things are getting worse and my pain is hurting more and I am tired of the brush off! Time for me to start being a pain in their behinds!
I have the shortness of breath when I talk,
I "float" around the stores,
one side of my body will be cold while the other is warm *very odd feeling by the way,
sharp shooting pain in my head and neck when I cough hard, pronunciation problems,
memory loss (I have had to reread this little sentence just to see what I have wrote and not wrote LOL it gets bad),
I forget what I am saying in the middle of a sentence.
Daily headaches (which my neuro says is migraines and that is all he is treating me for)
Noise tends to echo? in my head
I get a chlorine up the nose feeling alot..has anyone else ever had this happen?
Mood swings like OMG CRAZY
Ok imma read some more and see If anything else rings a bell b/c I am drawing a blank now
Ok, here are a couple of things I have that I am not sure if it is just me or if it has something to do with what is going on.
I have MANY phobias that I used to not have,
my head hurts severly when I brush my hair
and I have long hair and sometimes it is like my hair weighs a ton and I dont have the strength to hold it up. I have often times just cut it all off and got it over with.
I can totally relate to the heavy hair and painful to brush....
Most of what u listed is something many of us can relate to.
I have always enjoyed good health and even now I am physically fit but still, after I turned 45 it has been downhill since. My symptoms include:
pressure behind the eyes - feels like a migrane that is coming on but doesnt. The worse part is I have somewhat blurry vision (only for reading, not distance),
much less energy,
wierd vision sensations - imagining a tiny light or speck (please note I recently had an eye exam and was told my eyes are very healthy),
decreased tolerance for noise,
much less energy,
Hi and welcome to the Chiari forum.
Many of these symptoms can be attributed to Chiari....have u been DX'd with it? .,..or related conditions? Like syringomyelia, tethered cord, Ehlers-danlos, POTS, ICP....?
Have u had a MRI of the cervical spine, or brain?
Or been checked for low levels of vitamins and minerals?
Many thanks for putting your list of Chiari symptoms on this website . I have had many of the problems you have listed over the last ten years . It's great to find someone who has so much in common with me especially the bit about your hair hurting , my scalp just seems so sore . You mentioned your face pain and I wanted to ask was whether it radiates from your throat area [ adams apple ] ? My throat clicks when I swallow and I get the fullness in the ears . I am as yet undiagnosed with Chiari but I had a CAT scan which showed I had Cerebeller Eptopica ; I read somewhere that to show Cerebeller Eptopica you would normally need a MRI scan as it's not normally visable on a CAT scan . I am waiting for an MRI and having a steroid injection in both my shoulders as I am having trouble with them and my arms . Does anyone else get their hips click ?
Hi and welcome to the Chiari forum.
*Stormy* is no longer an active member, but I will contact her to let her know someone is trying to make contact......
Chiari can be seen with a CT scan, but the MRI is more detailed as there can be other issues then just the herniation, retroflexed odontoid, and other issues .
Once u have the DX u will want to have more testing to determine if u have related conditions and then locate a true Chiari specialist to help guide u.
Know u r not alone, many of us suffered for yrs trying to figure out what was wrong.
As for ur hips, that can be a related condition called Ehlers-Danlos that is a connective tissue disorder that allows joints to move in and out of joint.....
Pressure in the head
Electric shocks [ can occur anywhere on body and makes you yelp ]
Buzzing in legs
palms of hands burning
Soles of feet buzzing
Fullness in ears
Shakes [ internal also ]
Grinding in neck
Dull neck pain
Clicking when swallowing
Painful neck glands
Anemia [ may be due to not eating red meat as chewing starts face pain ]
Hair folicles hurt
Numb patch on scalp but hurts to touch
Walking like I'm drunk
Back pain [ especially lower back ]
Head nodding [ especially when relaxed watching tv ]
Slow word recall [ especially nouns ]
Cant keep eyes still even when eyes are shut
Sweating on any form of physical activity
Weakness in arms
White dashing dots in front of eyes when open
Weird Hic - cup / Burps [ sucking in air with face contorted like being sick and then burping ]
Involuntary Finger movements [ jerking fingers when hand spread out with palm upwards ]
Shins heating up like sunburn
Involuntary toe movements [ can't keep feet still ]
Pain between shoulder blades
Allodynia [ when you feel pain from something that should not be painful at all, such as a very light touch ]
Muscular pain / cramp
Sensitivity to loud noise [ producing an extreme startled response ]
oh and I thought I'd throw in ' Depression '
But then who wouldn't have that with all I have going on ;)
Thank you for getting back to me so quickly . I don't think I have Ehlers-Danlos as my symptoms don't seem to match up . I do have a problem with my CSF as it seems there is too much in my head and this is causing my pressure headaches.
Could you explain what retroflexed odontoid is ?
For all those people who are not getting the treatment they know they need , here is a little saying I picked up from my cousin in Canada :
A SQUEEKY WHEEL GETS OILED
It is not uncommon for us chiarians to have GI issues like GERD so ur hiccups and burps are something so many of us deal with too.
For EDS, I also felt like u do that I did not meet the criteria, but once eval-ed by the Drs I do have it so make sure u do get a Dr to review u for it,
A retroflexed Odontoid is the reversing of the position of the odontoid bone which helps hold up the skull....it has a natural curve to it just as the cervical and lumbar spine do....however, this is in a confined space and it is the same space that the cerebral tonsils herniate into making the space that much more crowded, so u may be told u have overcrowding.
To see how this affects not only the space but ur brain stem take the thumb and pointer finger of ur right hand and create a circle...with the first knuckles meeting.
Now take the pointer finger of the left hand and pointing toward u, slip it from the bottom up into the center of the circle....the finger should have a curve to it as it points toward u, and u will stop at the first knuckle resting on the top of ur other pointer finger...look at the space around this finger poking up thru here...there is some ....imagine a cerebral tonsil in there too....u have less space...well take the pointer finger and slowly turn it so it is no longer pointing at u, see how it closes up that space u had?
The turned finger is a retroflexed odontoid and this is how it affects u....BTW- when it turns it points toward the brain stem and also compresses it....
I hope u can understand that....if not let me know.
Thank you so much for explaining it .. you should have seen me doing it .. I was all fingers and thumbs ;)
So how long have you been suffering SelmaS ? Mine has been about ten years .. but I'm not sure if I have inherited mine from my mother as she had a brain scan due to her legs and feet having neuropathy .. she was told twice she might have a tumour but then twice they have said no she didn't . Then she was told she probably had MS but she dosn't have the symptoms of MS , more like Chiari really . Some of her symptoms are very similar to mine and she has some extra problems which are on the other lists that people on here have provided .The docs have done nothing about it . She is just left to deal with the pain . Not that there is much one can do about neuropathy ; however mine might be to do with years of domestic violence I encountered or perhaps a combination of the both . Well I hope all will be revealed when I have my MRI . Again many thanks for replying to me ... it makes me feel I am not alone x
CSF-filled tubular cyst ... this certainly sounds like what my mother was told she had . I wonder if she does have Chiari ???? We are both quite similar in build & looks etc so perhaps it is genetic in my case. She has pain and numbness in her feet and legs which is now starting in her hands . Mine is on my scalp and in my hands . Her head bobs far more than mine . We look like a pair of Russian dolls with our head bobbing when we watch tv . We both react badly to loud noise as well ... flaying out our arms like a baby when startled . The thing I hate the most is the face pain ; I did read somewhere that if you have face pain try sitting down and putting your head between your legs [ like you are told to do when you are fainting ] this certainly helped me but lets face it how long can one stay in this position . It does give a brief respite though .
It is very possible a syrinx also known as Syringomyelia is a related condition to Chiari these form when the CSF flow is obstructed...this can cause perm nerve damage....
The biggest problem is finding a Dr well experienced with Chiari.....
I have had symptoms my whole life, and I had surgery 4 yrs ago ....I do have other related conditions so I still have symptoms and issues but I am better post op then I was b4.
Good to know u found something that helps...but finding the right Dr is key.....u should take ur mom along with u so she can get checked too.
I am in UK so I get what I get given here . I have been searching on the net for someone in my county but there is only one . I will see how things progress . SelmaS I am so sorry you have had this terrible disease for all of your life ... at least I can say I had a normal life up until 10 years ago . Glad that the surgery helped you , Im not sure what I would do if they offered me surgery here . Like you said you need someone well experienced with Chiari .
Finding the right doctor is rather difficult here and if they were treatingme they certainly would not take the time to look at my mother too . She has resigned herself to the fact that ' this is it ' and dosn't wish to persue any help as most of the doctors and specialists , especially a certain neurologist , mad her feel like she was going mad .
In the Health Pages we do have a list for the UK....the list is by the Ann Conroy Trust....I would suggest research the Drs on the list, but they are supposed to be Chiari specialists....I know nothing of them, so educate urself and visit a few and go with ur gut as u will know which is right for u.
I meant to get her an appointment as well....I know what she is saying as I feel my dad has it and he said exactly what ur mom said...why bother at my age this is it....ugh...it can help understand how it gets passed along....oh well....
Who won't go mad with the attitudes Drs have along with the bad bedside manor...ugh....they drive us there.
Ok, an unlisted symptom for some
With FolFox chemo therapy the whole back side of my head and neck at the surgery site is completely numb. I guess that's not a normal chemo symptom so it's being attributed to ACM
Hi Bro.....wow, thanks for letting us know....strange how Chiari continues to affect us even with other medical issues/treatments.
Here is my 'short' list (in addition to the common symptoms):
Droopy eyelid (left eye), sensitive to light and noise, ear pressure, lots of nasal congestion, dilated pupils (I mean really large pupils that do not react to light), pain… everywhere, periodic limb movement disorder, “shock” type feeling that occurs only in my brain (ok, so I haven’t told this symptom to anyone since telling the first doctor and he decided I probably had a mental condition – but maybe you all might ‘get it’)!
Sorry to reply so late, June was a crazy busy month for me and I have just caught up now!!
Yes, I get pain radiating from my Adam's apple, sometimes it is also super sensitive in the spots under my jaw near my ears.
I do get throat clicking from swallowing sometimes and I used to get it even when I turned my head. I can take my larynx and shift it back and forth with my hands. This one I contribute more to the EDS as it is a connective tissue disorder. However, I think this could be Chiari as well as it looses and weakens pretty much every area of your body. Now that I think of it, this is something that did get better after surgery.
Hips clicking is a big thing with me too, again, I thought maybe it was more connective as my hips are so loose but that has also improved somewhat after having the surgery. So I am pretty sure most of these things are a combination of both disorders. I remember before I knew what was wrong or had serious symptoms that I was mystified that when I would climb up stairs I would hear this clicking noise!! I always thought it was a zipper on my hoody jangling but them one day I noticed I wasn't wearing anything that could make that noise and then I realized it was coming from my hips!!
I hope that answered your questions, take care!
My list is sever headache coughing,bowel m,eye go crosseyed and eye pain sight got bad,neck,back,leg,hip pain,breathing sob, chronic broncitis,dead arm with no warning,left side body worse than right,swallowing an choking problem,barretts,fibro,if i stand in one place for couple min feels like feet r being attacked by red ants with burning pins an needels,cold from knees down to feet always,trouble sleeping,tired during day but wont sleep cuz night will b worse,short term memory bad,forget what saying mid convo,sometimes nausea,heartburn second i try to eat,no disire to eat,but im the heaviest iv ever been,heart palps,dizzy,cant feel body its hard to explain i can feel touch butits like its not connected scary,urine takes forever an get a tiny bit,repeat ,yself constantley,both hand will go cold an numb,mind u these are not everyday i have all the above. Its like a pot luck everyday,,and a horrible way to live i hope surgery will take some away. Oh and dont let me
forget..pain pain pain everywhere 24/7 thank you all for listening i dont tell family or friends this cuz they look at me like im nuts for having all these symptoms they dont get it and act like i havenothing wrong and just say have the surgery soon cuz they think this will solve everything and it will all go away even when i say i will still have chiari after surgery they dont get it thank all
When i cough i get a chlorine tast in my mouth very strange
brain fog, eye prob.twitching, balance prob., hand corrdination, searching for words, visual field loss glaucomana from ICP being too high, phsyical weakness, Shortness for breath with rapid pulse with low BP light minimial exertion..
Here here sounds like the last 8 years of my life....
I have very bad kneck pain back, pressure in my head and temples and behind my ears. I have vertigo. It hurts behind my eyes my eyes get very red. My heasd hurts and feels very weird everyday. My vision is funky I'm tired alot and my body feels week. Ringing in my ears..my feet and hands get tingly I have a 8mm herination is all this normal?
Also sometimes I just feel like I could pass out
I'm constantly cold. Its winter in Indiana now and the cold makes it all worse and makes me constantly tense. Some other symptoms include:
pain in shoulders, neck, jaw and back of head
word recall problems
extremely cold all of the time
horrible lower abdomen pains
ringing/throbbing in ears
constant head pressure
tingling numbness in hands in feet and now sometimes face
dull arm pains throughout muscle
The other night I got out of bed to get a glass of water and almost fell to the ground mid step. I regained my footing and sat down for 20 minutes trying to get the dizziness to stop. I even ate fruit thinking it was low blood sugar or something.
One last thing.....my eyes constantly burn too and didn't even think it had anything to do with the chiari until I read from people on here.
hey im new to this conversation but finding it so helpfull to know all this is not in my head. i relate to so much of it , u think six stairs is bad i cant even make my bed without needing a nap HALFWAY through!.
I was just recently diagnosed with chiari I malformation. I was actually kinda happy when I got diagnosed because I no longer feel crazy. For the past 7 years I have had multiple head scans and have been to multiple doctors and was always told it was just normal migraines and anxiety. The symptoms I have are odd headaches ranging from burning pressure in the back of my head to electric shocks through my brain that make me jump. I hAve Chronic neck and shoulder pain where I hAve to use a heating pad or have my husband rub my neck and shoulders everyday.I suffer from terrible dizziness that makes me feel like I'm walking on a boat and I experience falling spells where it feels like I'm dropping through the floor repeatedly. I also have numbness and pain that shoots up and down the back of my upper arms and a cold burning sensation on the bottom of my feet. I saw someone say on here that they do a weird hiccup thing and then burp and I do that exact same thing!! I have acid reflux and get trapped air in my chest constantly. I'm not sure if that due to trouble swallowing. I also have heart palpitations that I take meds for. I have pain and fullness in my ears that I thought was from my Taj but it turns out it can be from this too. Now I don't experience all of these symptoms everyday but they do happen frequently.
Hi and welcome to the Chiari forum.
Ah yes, validation with a DX is such a relief and we all understand that feeling for sure.
Chiari is not easy to DX since we can present with a multitude of symptoms that come and go ...Chiari symptoms cycle so it is possible to feel great for long periods and then have a flare....when we go to the Dr we and they do not connect all the symptoms with having one root cause, so we go round and round dealing with them individually which does not render relief.....
With a Chiari DX, now you need to educate yourself on it and ALL related conditions and research Chiari specialists to find the right one for you,
Know you are not alone and we will help answer your questions the best we can,
My 4 yr old daughter was just recently diagnosed with Arnold Chiari Malformation. We had an MRI done for a possible neurofibromatosis diagnosis and found it. I was just wondering if these symptoms sound familiar.
*she says her legs are "busy" and she will just stand and not move them
*she says her eyes are "sparkling" which I have no idea what that means. Maybe they feel fuzzy.
*i feel like she might have a learning disorder because she has a hard time pronouncing words and remembering things are gets opposites and colors mixed up.
*when she is in the car she sits on her hands until they are numb. I don't know why she does that
* she has a lot of energy and falls down a lot. The neurologist just said she's klutzy but she falls A LOT.
* today she is complaining of jaw pain.
Any help would be great! I don't know how to make her feel better, which is frustrating for a mom!
Hi and welcome to the Chiari forum.
I tend to sit on my hands too, mostly when they are cold, but sometimes when I have no idea why.
Having balance issues can make us appear klutzy.
Many of us also have Ehlers-Danlos that could be the jaw pain.We also have several types of vision issues, could be floaters or something similar. Word recall and short term memory is not uncommon. Know you are not alone. Find a true Chiari specialist. Ask questions and we will do our best to help.
After years of suffering and medications that were not helpful, I was diagnosed with Chiari in June this year. I have many symptoms, that make getting up in the morning a difficult task. Every morning I wake up with terrible tension headaches. I have numbness in my hands, feet, and face and have chills all day long. I work in hospital customer service and the hiccups I experience can be a nightmare when talking to patients. I have an 8 year old son, and I can't seem to find the energy to do much with him and that makes me feel like I'm a bad mother. I am scheduled for surgery on Jan. 6 2015, and I am hopeful that this will alleviate most if not all of my symptoms. At this point I am frustrated, no one understands what I deal with on a daily basis. If the surgery doesn't work, I don't know how I can continue working, prayerfully all goes well.
Hi and welcome to the Chiari forum.
Please post your surgery date in the surgery date thread so a prayer thread can be posted for you......
Surgery is not done to relieve symptoms but to restore CSF flow....
Do you have a CSF obstruction, a syrinx? or any of the related conditions? Keep in mind these related conditions can cause many of the same symptoms.,
Know you are not alone <3
Thank you Selma! I'm going to look for a specialist now! I want her to have all the help and resources available. Thank you for taking the time to respond!
Hello, my name is Lisa and my son has just recentley been diagnosised with Arnolds Chiari....it has answered soo many questions and given me that ahha moment....he was diagnosised on his 20th birthday and all his life he has had so many unexplained difficulties thru his whole life....never getting a sure diagnosis of anything expcept depression and anxiety....he has recentley really detoriated....weight loss, seizures,letharic,and constant dripping of fluid of the nose of clear fluid when up and around for more than 30 minutes....he told me after being in the hospital a few days from the seizures that he felt as if he had fluid on one side of his head...then the dripping started and then it stopped dripping so bad and within 24 hours you could see fluid on one side of his face and it seemed to go down the neck and pool around the neck/chin area....within the next 24 hours he started running fever of 103.8...back to the er; we have had many trips to the er in the past couple weeks....each time they seem to act as if we are crazy...telling us that its not possible for him to feel fluid and that basically I guess my sister and I were crazy and that it isnt fluid its swollen lymph nodes....he has very bad teeth and they need extracted and so this last trip they decided was his whole problem....they pumped him full of fluids antibiotics even antiviral meds of some sort the fever broke....less than 12 hours home from hospital and he has went back to being weak,pale in color and running 103.8 temp again and this morning he has a rash over his chest and upper arms.....I am so frustrated and frankly scared for him....do you know if high fevers can be associated with the Chiari's...I read somewhere that the dripping of the nose was spinal fluid and that can end up resuting in infection....cant find where I read this at now....I'm sure this is probably one the most confusing lengthy comments you have read but at this point my brain is quite scrambled!!!!! I appreciate any info you may have
Hi and welcome to the Chiari forum,
To test for CSF fluid you can do what they call the bullseye test...let the fluid drip onto a clean paper towel and let dry see if a bulls eye pattern is created.
Next, find a true Chiari specialist to help DX other possible related conditions and see what is going on...to see what treatment is best for him.
Far too many Drs are not aware of what Chiari is....the older term Arnold Chiari is only used now for type 2 which is so evident it is DX'd at birth.....most of us do have type 1 which is just referred to as CM1.
Make sure you have copies of ALL the testing that has been done to date and going forward always request copies of the testing along with the reports....
It sounds like he may have an infection of some sort to have a high temp.....not knowing where you live I have no idea what to suggest until you can get him to a specialist...but he needs care now....if your local ER is not helpful maybe look in your area for one that may be a larger facility that may be more aware of uncommon conditions......
Please do not add more symptoms to this list if they are already posted...it is meant for us to refer to to see that we do indeed share similar symptoms and issues...thanks.
This all happens to me when my cortisol (stress hormone) is up (also borderline diabetic) and when I eat too much sugar or white bread (carbs) etc... then the hormones go all over the place and I get all of the symptoms you listed above and more. It gets to the point that I wake up with nausea and dizziness. I have come to realize the dizziness is just that I am seeing small squiggly lines going across my eyes (I can see them if I look at a blank wall and they are in fact on my eye as they move with it when I try to look at them - the doctor called them tracers). If I eat very clean for 3 or 4 days (no sugar or refined carbs), they all go away. I did not understand any of this until my doctor told me I might be perimenopausal. Hormones mess with a lot! Just food for thought ;)
Hi and welcome to the Chiari forum.
IS this Dr a true Chiari specialist and did you have ALL related conditions ruled out? It is very important to have that done as it can be a related condition that can affect the surgical outcome and possible symptoms that linger.
I had surgery in May '09 and it was well worth it for me. I did see a true Chiari specialist who explained why they had to do certain things because of the related conditions I have....I would do it all again.
You have to choose what is best for you, but do get more testing as this surgery is not done to remove symptoms but help prevent other issues from developing, which could lead to perm nerve damage.