Chiari Anyone????

FUNKYHEADGIRL

I was recently disgnosed with a Chiari 1 Malformation. It showed up on a MRI of the brain. My neurologist had this MRI ordered after I complained of weird headaches located in the back of my head/neck area. Plus, I have all kinds of neck and back problems. Look up Chiari on the internet - you will find information there. Good Luck!

kirafaye

well here is a pretty good list of symptoms from *********.org
Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Ringing in ears (like the tone heard in a hearing test)
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Drooling
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems

and you don't need ALL to be a chiarian

As for the cause, chiari is a congenital malformation (congenital = born with it) Where the cerebellum (hind brain) is distended down the foram magnum (hole at the base of the skull ur spinal chord goes thru) and there is pressure put on ur brain and some times ur spine which can lead to another condition sometimes associated with it, syringomyelia. Thats where the chiari causes the CSF to stop flowing and creates pockets of spinal fluid which slowly severe and crush ur spinal chord.

Alot of these symptoms can be attributed to things abit less severe then chiari cause chiari is still considered rare. Other things can be lupus, brain tumour, MS, prenacious anemia, sevre thyriod problems, fibromyalgia etc etc the list goes on. Best bet is to get an MRI done to rule out the brain conditions and if they come back clear (make sure u get 2 opinions that they are clear to make sure cause alot of peopel miss CM) then blood work for specific conditions etc etc.

If you have chiari (with or without the syringo) you most likly will need decompression surgery, this is where the remove parts of the skull around the base and sometimes the nobbly parts of C1 and C2 of ur spien to make room. Also some may split the dura (linning of the brain) and put a patch there.

If you have anymore questions feel free to PM me or something. I got a major crash course in it and am right now recovering form the decompression surgery.

jellebeans

hi,thanks for all imfo, very helpful
my severe headaches came first 5 years ago after banging my head,then gradually had more symptoms adding along over the years.
i know you say you would be born with it but do you think a bang on head could trigger it.
ive had mri last year to check for aneurysm so maybe it would be worth getting my scan pics looked at again then.
i get terrible pains in my arms and legs too especially my thighs,do you have that too?
do you have to put up with terrible pain everyday?
im only 27 and i feel about 80!!!!!
thanks for your help
not sure how to pm...!

JenEbean

Jellebeans,

A bang on the head had exacerbate the symptoms of Chiari for sure. I am not sure if it can cause the Chiari though. If you had a MRI the radiologist should have picked up on it but it is worth asking your doc to have them read it again and look specifically for the Chiari malformation. I was diagnosed with it in 1994 and had the decompression surgery in 1998 at age 47. I had terrible headaches in the back of my head every morning which lasted all day, dizziness, my feet went numb, I had numb spots in my back, loss of balance, I would walk to the right when trying to walk straight, and had feeling of impending doom, like I was just going to drop dead. Since surgery all of my symptoms are gone. Please call your doc and have them read your MRI again looking specifically for the Chiari. It would put your mind at ease and if it is negative you could follow another path for your pain.

kirafaye

Yes a bang on the head can lead to teh chiari becoming a problem...see ur born with it but it doesn't always lead to problems and stuff like a bag on the head makes the cerebellum get pushed and pressure alot starting symptoms, thats quite common (mine was untriggered) My pain is right sided and my head....and its daily pain and constant for the past 6 yrs. I'm only 18 so I haven't even started my life and it feels like I wont be able to live it cause this is so debilitating. It is definatly worth getting ur scans checked again cause most don't even know it exists....when I was in hosp the onyl person who knew what it was was my surgeon. So definatly get a second opinion....I don't know what country you live in but in new york (america) me thinks there about they have 'The Chiari Institue' or TCI they specialise in us....if that is close by give them abuzz, if not definatly get a neurologist to check it out.

MustangFilly

I’m sorry that you are feeling so lousy, Jellebeans.

Yes, a blow to the head can cause previously undiagnosed and “inactive” Chiari to become symptomatic – that’s exactly what happened to me. I had Chiari from the time I was born, but it did not ever bother me until that smack to the head threw everything out of wack, and then – WHAMO! – I was in for it!

And, yes, pain in the arms and legs can be symptoms of Chiari – I have them too. It feels like my legs are aching right through to my bones and beyond.

No, you do not have to suffer the rest of your life if you do have Chiari. Decompression surgery helps some, and medications help others. I had the surgery, and still need quite a bit of medication, but I live a normal, happy life.

And, no – reading “old” MRI’s might not always provide an answer. If they were looking for an aneurism the last time, the MRI pictures may not have extended far enough down the skull/neck to show Chiari if it is there, so you may need to go through the procedure again to get a proper diagnosis one way or another.

I hope you will soon find an answer to your pains. Do not give up – you do NOT have to live in pain, for regardless of your condition, there are great solutions to pain management out there, you just have to find the doctor and the solution for you. Keep at it, Jellebeans, and keep your chin up! We'll be here if you want to talk...

Mustang Filly

MustangFilly

Kirafaye, please don't feel so down about your condition and situation - it WILL get better. I know. I've been in your shoes, and it was a rough road to walk, but I kept trudging along, and I have my life back. Not only do I have Chiari, but I have MS as well. Tough, but not impossible to deal with.

I am a single mother happily raising my two beautiful daughters. I run my own business full-time and then some. I raise, train and compete with my wonderful horses. I take care of my farm and all the animals on it full time. I am NOT wonderwoman - just a simple country gal who got a rough shake in life and said "SO WHAT, I am NOT going to let this stop me from doing what I want to do!"

So I fought with doctors and argued with those who would hold me back and did what I wanted to do and built my strength and pain tolerance and take my pills (MS Contin - slow release Morphine and a few others) and I keep on going. But I don't trudge along anymore - I skip and dance and play and run when I want to.

Sure I have my lousy days, as do people who don't have these illnesses, but I take them in stride, slow down a bit when I have to, and get back at it when I can.

The Chiari Institute you mentioned is on Long Island, at the North-Shore Long Island Jewish Health System Hospital. I would LOVE to go there, as my original decompression has partially failed, but they do not have the technology up here to "prove" that, and therefore justify going back in. Nor do they know what to do if the did go back in. LOL But, as a Canadian, I would have to fund the trip and the procedures out of my own pocket, and I can't do that (the whole single mother bit), so I will live with what I have. However, I have researched the facility intensively, and firmly believe that it is the best and most progressive in North America. Anyone who has access to it should certainly take advantage of that opportunity...

Chiari is a pain in the butt, the neck, and several other body parts, but don't let it ruin your life!

MustangFilly

kirafaye

Its just that since surgeyr I have been getting worse....I also have huge syrinxs runnign down my back that are creating major problems, I have no medication that stop the daily pain and I am always in pain, have issues moving and seeing.....I have a severe case with extensive syrinxs and damage....mines goign to be logn and painful mot people with my severity are in wheelchairs on disability and peopel with less then me, so I am keepign onliving, but its hard to stay out of the wheels and in the work and studyign game.

MustangFilly

I understand your frustration, Kirafaye, I certainly do! I deal with it regularly. It is quite possible that the "worsening" since surgery is due to inflammation that is getting in the way of CSF flow and creating additional pressure points. Once that goes down, you may well see more improvement.

One of the regular meds that I take is a prescription anti-inflammatory. When I know that things are "blocked up" in there, it really helps. The docs don't understand it, but I do - I get tense, the area gets inflammed, CSF backs up, pressure results, take my pills, inflammation goes down, everything is good again.

If you can get in to see a pain management specialist, that would be greatly in your favor. So many doctors are reluctant to deal with chronic pain, and to hand out the prescriptions for the "big gun" meds that help people like us, but pain specialists are not, and they are willing to work with you to find the relief that is YOURS.

Good luck. I will be rooting for you!
MustangFilly

kirafaye

thanks, I have yet to see a pain mangement specialist, they pain that gets so bad I wish I could run over it with a truck obviosuly isn;t a blib on their radar......I hard the inflamation could dreat worsening, but I always thought that it woudl woprsen symptoms already presnet not get a couple of new niggles....and I was stupid yesterday and was dancig aroudn for liek 2mins and nopw my back is murder!!! teach me to try and enjoy life :P jk

MustangFilly

Keep trying Kirafaye, because you DESERVE to enjoy life!

Besides, I honestly feel that, to some extent, we have to help ourselves by building up our own strength and suppleness, plus some inner resistance to the pain. Both are hard to do, of course, when the pain is holding you back from doing ANYTHING, but just keep taking those "baby steps" when you feel up to it, and soon you will be able to take bigger ones.

Don't lose hope, Hon. Hope is all we have some days, so hang on to it like it's your life line.

MustangFilly

jellebeans

hi,kirafaye im sorry you are going through all this pain at such a young age it must be awful for you i still having trouble understanding chari but i do hope you can get some pain free days.ive forgotten what it feels like to feel normal and have no pain.i wouldnt not wish my pain on my worst enemy but its still comforting to know others do go through this too.i hope you get lots off support from your family and friends.
because ive had clear scan no one believes me, my doctor just thinks ive migraine and depressed ,i am depressed but its because of the pain! nothing else!my partner dont believe the pain im in and doesnt want to hear me saying "i have a headache" one more time!i was never ill until all this,i live in the uk so to get refferd again to see neuroligist i think will be immpossible,thats why i need to do all my research properly before i go to my doctor again because if i go with a list off things ive got off the internet he will think im mad for sure!!
what is the most painful thing for chari and which order would symptoms appear?
my head and left eye is the worst,at the moment im stuck on the sofa ,just the slight movement and my head feels like it will explode and so much pressure i feel sick.
my left eye hurts and the top lid s swollen and out off shape again.
i do get alot off the symptoms on your list i have trouble with my neck but not really my back.i also get shhoting pains in my head,is that a symptom off chari?
mustangfilly you sound like a very strong person and im glad you are able to get on with your life,i have a 3 year old who i look after on my own most off the time as my partner works so much sometimes i dont know how i get through the day as he likes so much attention and i dont want him to be unhappy because off me.
my scans are in my loft,i think they did have my neck/bottom off head so maybe they will be ok to get checked again,i just have to know my symptoms match chari and then persuade my doctor to agree with me !
i really appreciate all your help and i wish we could all be well and have our lives back again,i feel as if mine has been stolen away,if i had some answers to it maybe it would make me feel better x

kirafaye

Unfortunatly alot of doctors are a-holes! and don't know much. Symptoms are differing for everyone.....I also have a 2ndary disorder to the chiari that the chiari caused and thats a cause for continous pain on top of the chiari.... ahhh the wish for a pain free day I don't rememebr those days....they were too long ago.

jellebeans

yes doctors are a**holes!!! and i really cant stand the way that if they cannot see anything wrong they put it down to stress,deppression and say its all in the head!!!!
do you know if the severe eye pain could be apart off chiari?
you have had your surgery so maybe a pain free day isnt that far away for you x fingers crossed xtake care