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Old 03-16-2009, 11:03 AM   #1
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borderline chiari

hi,im in the process of trying to be diagnosed for chiari. im in the uk but after emailing TCI in new york my scan i was told theres a minimal herniation. ive now seen a doctor here who says he doesnt really think i have this but is sending me for another mri as my other one is 5 years old.
if i do have chiari im sure its caused by a head trauma i had. im abit confused about the tonsil herniation as mine is borderline at the foreman magnum,im wandering what the chances are of being a bigger herniaton after 5 years? can it carry on coming downwards after the bang on the head still? if i dont have a bigger herniation on the next scan im not sure my doctor will consider chiari as causing my problems.
thanks

 
Old 03-18-2009, 03:10 PM   #2
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Re: borderline chiari

hello jellebeans

I just thought I'd pop in a bit here.

Cindy is still in a lot of pain,but she is getting better...it takes awhile to heal from neck fusion surgery.It's still hard for her to be on the computer with all that pain she has.

Is your MRI just going to be of your brain?It would be great to have a cervical spine(neck)MRI and also a full spinal(back)MRI.You might have a tethered spinal cord like Cindy(which is common in Chiari patients) or you could have a Syrinx anywhere in your spinal cord.

Also you'd want to have a flow study(special MRI I belive it is)to check for CSF blockage...if there's no blockage then the herniation shouldn't be causing the sx(usually,but no dr. seems to know for sure....)

Sorry....wish I could give you more advice,but unless you go to a Chiari Dr,you won't get any real answers about your Chiari....it's very frustrating,but just keep pressing on and hopefully your Dr will be able to help you~



Scout~

 
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Old 03-20-2009, 01:18 AM   #3
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Re: borderline chiari

thanks scout, am only getting an mri of brain as the consultant is only doing it to keep me quiet i think!!!! i dont think he understand chiari and only talked about diagnosing it by herniation sz. if nothing different shows on my scan then ill have a fight on my hands to get refered to a chiari specialist!!
will a tehered cord not show on brain mri? x

 
Old 03-20-2009, 10:32 AM   #4
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Re: borderline chiari

hi jellebeans!

I do believe that Cindy said the brain stem isn't "plumpy" when you have a tethered spinal cord...that's the big round part that is above the long stem.If your cord is tethered then it pulls it down...sorry I'm not good at explaining brain stuff...LOL

I will give Cin a call this weekend and let her know your concerns.So let me know anything you'd like me to ask her.

I'm still trying to figure out Chiari....but I have a new GP Dr. and he's fabulous!Like I said in a previous post I had over 20 sx and they're mostly gone...so I chuck it up to my lower B12 problem.The university neurologist said that 1 in every 4 persons has a slight cerebellar herniation(so there's a lot of Chiari people out there...hee hee hee!).Just a herniation does not mean you have Chiari...there are some other "characteristics" that the radiologist looks for...I don't have any other of those characteristics...so my 6mm herniation is considered"non-chiari" or as they say "cerebellar tonsilar ectopia"....

Hopefully the radiologist will be very good at looking for all the signs of Chiari on your MRI.Remember Cindy's was first 6mm and then TCI said it was really only 3mm(I think..I'll have to ask her about that!).My GP says that everyone measures differently....LOL

So may I ask you what your sx are?Just wondering........I hope and pray you get a very excellent reading on your report so you can have some much needed answers.

Take care.....wishing you many blessings.....and a DX for sure!

your friend,Scout

 
Old 03-20-2009, 02:26 PM   #5
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Re: borderline chiari

hi scout, when you speak to cindy please give her my best wishes and tell her im thinking of her,the boards arent the same without her!!!!
it would be great if you could ask her what other things should be checked on my mri,i was going to leave a list for the radioligist/doctor to check but i dont want to insult them!! but i dont think hes that clued up on chiari.
ive loads of symptoms mainly headaches/headpain, i think i near enough cover most of the symptoms listed for chiari!!
i forgot to ask the doc about the b12 thing, my mum has that too.
thanks for your help,take care xx

 
Old 04-19-2009, 05:21 PM   #6
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Re: borderline chiari

Quote:
Originally Posted by jellebeans View Post
hi,im in the process of trying to be diagnosed for chiari. im in the uk but after emailing TCI in new york my scan i was told theres a minimal herniation. ive now seen a doctor here who says he doesnt really think i have this but is sending me for another mri as my other one is 5 years old.
if i do have chiari im sure its caused by a head trauma i had. im abit confused about the tonsil herniation as mine is borderline at the foreman magnum,im wandering what the chances are of being a bigger herniaton after 5 years? can it carry on coming downwards after the bang on the head still? if i dont have a bigger herniation on the next scan im not sure my doctor will consider chiari as causing my problems.
thanks

 
Old 04-19-2009, 05:25 PM   #7
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Re: borderline chiari

Hi where abouts are you in england? im in milton keynes, i have had the same problem, head injury , and borderline chiari ,with realy bad symptoms, i have had reports from 2 neuros in america saying i have borderline chiari, but no one will take me serious over here in england, because my herniation is not 5 mil, and have been fobbed of with all sorts of things , from migrane , to madness, fibromyalgia,and the list goes on,,, im looking to go over to america asap, feel like im going out of my mind, when no doc over here will listen to me, what are your symptoms? who did you contact and the chiari institue? nadine

 
Old 04-22-2009, 08:28 AM   #8
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Re: borderline chiari

hi squeekers,,am so glad you are here!!!!!!! well i sent an email to TCI and got one back from the adminstrater there which just by luck had the forwarded message on it by the specialist there who looked at my email, and pic of mri which said about the minimal herniation. when i replied back to ask if this means def that i have chiari they wouldnt say and told me to make an app with them,but i take it as a yes anyway!!!
ive since been refered to a normal neuroligist who thinks i dont have it but was nice enough to send me for another recent mri which i had just last wk. i dont know the results as yet but i got the impression he didnt know much about chiar to be honest! if it comes back negative i will push to see a chiari specialist,nearest to me is addenbrookes as im in suffolk. i dont see why we should have to pay,it will cost you thousands!!! if my doc dont refer me im going above the doctor to where you file complaints then im quite sure ill be refered then as its our right as a patient to be seen by the right people.
its took me 8 years to get this far,im not givin up now!!!!
would love to hear you story and who and where checked your scans also,
cant wait to hear ffrom you!!!
also my symptoms are basicaly nearly all of the normal symptoms for chiari but worst is the headaches, they are just not like normal headaches, sooooooo bad! and also is nerve pain,i get shootin and stabbing pains throughout the day even wiv no headache but ive not been taking seriosly either,this is my 3rd neuroligist ,the other 2 told me theres nothin wrong with me and one sugessted a shrink to make me realsise there was nothing in my head!!!!! cheek of it!!! but i didnt have my email then to back me up ! but now i do at least it helped me get a recent mri if anything!! its a start!!
cant believe your doc wont take the reports seriously,its madness,ive heard some docs will say you have something to make money but they arent all like that. did you pay for your reports?

Last edited by jellebeans; 04-22-2009 at 08:49 AM.

 
Old 04-22-2009, 03:50 PM   #9
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Re: borderline chiari

Its all madness..well my story is, i had bad horse riding accident 3 years ago, landing on my head at high speed on a concrete road, the back of my head took all the impact, but nothing broken, so i thought i had had a lucky escape....lol around 4 weeks later started feeling odd, with symptoms are brain fog,feeling drunk,memory problems, foget things, headaches,exausting, slept for 6 months, pain tingling nerve like pain all down my arms and legs , hands and feet, oversensitive hearing, and bright light painfull,popping noises in ears,all the time, insomnia,bladder weakness, lump in throat cant swallow properly,temperature gauge doesnt work, shivering, or sweating,heart rate sky high,weakness in my legs, toes purpe red swollen like frost bite,,poor circulation,cant touch anything cold, like taking milk out of the fridge,its to painfull, and the list goes on..ive worked hard and was sport mad before this happend,and i had an mri done and was told i was fine nothing wrong get back to work,ive been past from doctor to doctor, and they are all treating me like im mad.!!! ive been asked if i take drugs,told i sound bonkers,i need a shrink,, they have said i have m.e,fibromyalgia,migranes,and im sure it will sort its self out in time, people suffer from these things after head injury,,,, ye right. ive spent 3 years looking for an answer to prove im not mad,, and everything i reserched kept coming back to chiari, so i sent my scans of to 2 top chiari docs in america, rosner and heffez, and they have both said i have borderline ..very small herniation,but there is no space,my tonsils are pressing on my brain stem, and you can see there is no space posterior to my cerabellum for csf flow, and no space in my cistern magna, classic chiari zero, and the fact that i had a head trauma, and the fact that i have major symptoms, it all points to that, but over here in uk they do not belive in chiari zero, you must have found this out for yourself, if its not 5 mill herniated then you do not have chiari, and this is from neuros that deal with chiari, they say that some people have large herniations and it doesnt cause any problems, so theres no way your small herniation is causing those symptoms, they must be in your head, your are stressed out... lol ive show d my reports from america to 7 neuros and they all say no no no you dont have chairi.. i have just sent my scan to doctor oro in colorado so awaiting a reply, but im planning on going over to america this year, i dont have insurance, but im so desporate, i will pay for the cosultaion, im on the world of chiari website and have spoke to hundreds of people in the same boat as us.... and they have had operations of the two doctors i mentioned earlier, and they have great things to say about them, so i dont think they are just after money, like the neuros over here keep telling me,,, at the end of the day there has got to be a logical explanation for these symptoms and the only one that makes sence is chiari,i dont for one second belive what im being told over here, if i was mad, i wouldnt be spending all my savings on a trip to see a neuro in america,, my toes will end up droping of at this rate due to nerve damage , and im sure my local gp will just say , well mabey your shoes were to tight!!!! haha. the world has gone mad.... you should take a look at that website, its great for info, or just having people to talk to that understand how you feel, i think that the docs in america havent got fund restrictions like the nhs, thats why they are so advanced, i no they get payed, but the docs on the nhs, get payed the same rate no matter how many patients they see, they dont push the boundries,they just play it safe, plus they are under lots of rules and restrictions, they wont do any more than they have to because of funding, its not like that in america, they will do as many tests as it takes to find the problem, if that makes sence.i no 100% if i do not go to america, i will not get treatment,and will be stuck like this, there is no way a neuro over here will do surgery on a small herniation as is more than there jobs worth. plus they are all trained on the 5 mil rule, but if you look at the videos on the chiari newyork institute they explain why the 5 mill rule, is rubbish,even a standard mri doesnt always give a clear pic of the size of the herniation, they same that a standard neuro may only ever caome across one case of chiari a year, well mabey they see lots more but just dont know it... nadine

 
Old 04-22-2009, 03:54 PM   #10
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Re: borderline chiari

you should check out the websites, chiari international, and look at the pics of borderline chiari, and the website chiari one, it also has pics .

 
Old 04-23-2009, 03:37 AM   #11
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Re: borderline chiari

Do you have a pic of your mri? ive got mine on disc but not sure how to extract it of disc onto email.... what other symptoms do you have? do you think they started after a head injury? you should send your scan to doc dan heffez, there is 3 chiari institutes that i no of, the one in new york,colorado which is run by dr oro, and the one in milwaukee, run by dr heffez,. there is olso a doc is spain that has some new way of doing the op, ive sent him my brain scan also, but waiting for a reply. are you able to work? i have some good days and bad days, but live of painkillers everyday. i think once ive been over to america, i should make a complaint about the NHS, i feel like taking my story to the news papers or something, i dont think in this day and age, this sort of stuff should be going on. i dont understand why the doctors dont listen to people...

 
Old 04-23-2009, 05:26 AM   #12
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Re: borderline chiari

hi, i totally feel for you cause i understand completly what you are going through and the sad thing is theres prob thousands in the same situation.and your right,in this day and age we shouldnt have to fight for years for a diagnoses,its ridiculous.
yes mine started 9 years ago after being hit on the head with a stilletto heel!!!! it was an accident! first just thunderbolt headaches,then it just progressed over the years with all the other symptoms,but i dont get the blue toe thing that you do..that sounds scary,what does your doc say that is then??? i saw 2 neuros and rhematoligist years back,they couldnt find any reason for arm and leg pains,and the neuro was just a waste of time and after being told to see a shrink it totally crushed me, that was 5 years ago so i just resigned myself to thinking maybe it was in my head and just live the next 5 years without going back to my gp.i paid at bupa 5 yrs ago for my mri as neuro wouldnt even let me have one!! it came back clear. was last summer
that ive got worse so looked into it as ive always wandered bout chiari but did nothin about it until a lady on theses boards gave me some great imfo and encouragement,i checked my scan against others on the net and then tried to email it to specialists. tci is the only one who answered me.
my scan is the old fashioned way so i scanned it in to my computer but im hoping to get a copy of my new one on disc,i think you can save the image to your computer then access it that way to attach it to an email.
but from all my research a neuro who specalises in chiari will understand borderline chiari even one in england. i found my nearest one using the ann conroy website.if you go on there you can find one near to you and that would be cheaper!!! but your doc should just refere you anyway,its no skin of thier nose...they just being akward!! my doc wouldnt send me to specialist but armed with my email from tci he did recommend to the neuro to let me have a new mri,my neuro took copies of my old scan also and hes taking both mris to a big radioligist meeting with him! i know thats sounds like good news but i still expect the same answer...nothin wrong!!!
but if i was you i would find nearest specialist here in england first,and armed with your reports demand to be refered,i cant believe your doc wont do that,he must be so mean!! if he refuses then go above him,then he will have no choice,hes not qualified to say the reports you have are rubbish.

im hoping for my results next wk and need to get a disk copy like you have to check myself!!!! but i wont be happy until i see a proper specialist.
my herniation is exactly on the line so it doesnt actualy desend but like you the cerebellum is squashed to my skull which looks like to me no room for csf flow but when i had my mri last wk i asked radioliguist to check for that on new mri and he said to check flow you need another sort of scan not mri.
this is a long post ..sorry but its good to speak to someone not so far away in the same situation!!! not that id wish this pain on anyone!! and no i dont work,i do some volunteer work 2 days a wk but id struggle with a full time job plus i have children to look after also. im only 32 but i feel like 50!! i have never been ill in my life until this happened,ive now started to get stomach problems which i wander if could be chiari related also as docs dont know whats causing them either!!! i think im falling to peices ha ha
ill see if i can find a specialist near to you,its worth a shot before you bankrupt yourself in new york!! id love just to to TCI but no way i can afford it!
do your family support you or do they think you are bonkers too!!! mine just seemed to agree with the docs and think im obsessed with my head,i always joke that when i die i want I TOLD YOU SO on my grave stone,cause i will prove them all wrong!!!! xx
im the same as you,good and bad days ,i live on pain killers also,but i also suffer in silence cause nobody wants to be friends with someone whos ill all the time and my other half puts up with so much i feel sorry for him,i really try not to complain when i hurt and get on with it but somedays i just cant!!!

Last edited by jellebeans; 04-23-2009 at 06:17 AM.

 
Old 04-23-2009, 06:01 AM   #13
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Re: borderline chiari

hi again!! just re read your post, my neuro i saw last didnt say anything about it needing to be a large herniation,even though i agree most would!!he did say he dint think i had chiari but was still opened minded about it being a borderline case. the only thing which bothered me is he never took into account the other factors when diagnosing chiari zero,like the csf flow,elongated brainstem etc ect,he was just talking about herniation. i dont understand why they dont understand!!!have you tried changing your doc to a more sympathetic one?? you have the evidence in your reports you just need to find one nice doctor to listen to you!! and one who doesnt go by the 5 ml rule cause im sure there are some out there,its just a case of finding them!!

just seen there is a chiari specialist in birmingham and manchester,not great a geography but am guessing one of these would be near you?? let me know and ill get docs name hospital for you,just incase it could be any good to you,i think in our situation anythings worth a try!!!

Last edited by jellebeans; 04-23-2009 at 06:12 AM.

 
Old 04-23-2009, 02:40 PM   #14
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Re: borderline chiari

Thats how i feel,i just want to say i told you so ,to everyone,, if i went to america and they said i needed a brain opp, no one understands, i was 26 when i first got sick, now coming up 30, i dont go out, dont have a social life, dont have fun, and just want to be normal again and riding my horse. my parents dont understand and are old fashioned, they keep saying if the doc says theres nothing wrong then there is nothing wrong, why are you always going on about brain surgery, they think ive lost the plot, but they dont understand how bad it is, its not just a little pain, it messes everything in your body up, i feel like im going nuts, and cant think straight, most of the time, and then if i have the odd good day, i start thinking well mabey its not that bad, mabey its just me, mabey im crazy, .... do you ever feel like your on drugs?? brain fog, cant think straight? i hate that more than anything.. i did sent my scan to some of the neuros on that ann website, the guy thats in birmingham graham flint i think his name is said i would have to make an opp, and the others i contacted said, no chiari, no herniation, but is the same as on the chiari one website.. diagnosed at the chiari inst newyork,my tonsil are at the line of the foramen magnum also, can you email me your mri, ive managed to find my old mri scan 3 years old i can load that up on the computer, but not the new one, it doesnt give you an option of doing that.


edited



whats the pain like you have in your legs and arms? does it tighten up your muscles also, and feel like a strange tingling nerve pain, hard to explain. do you have probs swallowing? i looked into getting international insurance, it costs about 180 pound a month, so i could go to america, but wasnt sure on the pre existing condition thing, i havent been diagnosed in england so its not on my notes, but they can link things and symptoms together and not pay out, if you have symptoms even if it has not been diagnosed , they will get you that way, so im not sure on that, even though there is nothing on my medical records that say i have chiari,, i realy dont think there is any chiari neuros over here that will treat chiari zero in uk, i have spoke with lots of neuros and they all seem to talk about the size of the herniation, do they even do cine scans over here in england?? dr oro in colorado is into the csf flow blockage as a cause, and the neuro in barcelona dr royo salvador, im waiting to find out if hes up to date with the redifind studys of chiari, if i get any luck with them ill let you no and then you could send your scan of to them, he does some surgey that doesnt involve hacking your head open like a water melon, you should send you r scan of to dr heffez and rosner, im sure they will agree with the chiari institute, i figured the more doc that said i had it, the more they would take me seriosly over here in uk, i was so wrong, i feel like going in and telling them how to do there jobs but im not sure they would like me very much. haha have you tryed a good chiropracter, ive found one that does my neck and it helps with my headaches, do you find you get a headache if you cry?? i do. im glad ive met someone else in englan that is the same, i realy thought i was the only one over here.. plus the head injury thing .. nadine

Last edited by Administrator; 04-23-2009 at 04:35 PM. Reason: Read the rules before posting.

 
Old 04-24-2009, 03:34 AM   #15
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Re: borderline chiari

hay ive just had an email from dr royo, in barcelona confirming chiari malformation, you should send your scan to him...

 
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