Aa
low lying cerebellar tonsils??
hi all,
ive recently recieved me results from my MRI scan - states normal although cerebellar tonsils were slightly low lying. wat does this actually mean, the doc didnt given me any information and when i google im gettin all kinds of information. im confused!
ive been suffering from non epileptic seizures now for nearly 6 yrs followin the birth of my first daughter. i finally got another doctor to aggre to a second lot of testings as ive jus been left for 6yrs nearly.
my sypmtoms :
its hard to describe but the bestr way is i feel odd, like im here but not here - more like im drunk when im not.. i go spacey. light headed, semi conscous, cant talk, dizzy, slurry words, my eyes are sooooo sensitive especially to bright lights, even bright sunlight. i have tinglin, shakiness, twitchin, numbness, gaggin, short of breath, headaches/eye aches - both can be very painfull and last for days.. feelin my own pulses withn my body also feels like me chest is guna explode, i go from hot to freezin, stiffiness too to all lim thats jus some of them. doctors hav jus said its non epiletic and left it at that!
for 6yrs nearly ive lived with no answers and jus bein fobbed off with nothin and no one listenin to me. im 27yrs old now nearly 28, these started back in feb 2005.
i look forward to any input / opinions anythin. and thanx for readin. any questions id be happy to answer as werent sure wat to write. :-)
thanx!
ive recently recieved me results from my MRI scan - states normal although cerebellar tonsils were slightly low lying. wat does this actually mean, the doc didnt given me any information and when i google im gettin all kinds of information. im confused!
ive been suffering from non epileptic seizures now for nearly 6 yrs followin the birth of my first daughter. i finally got another doctor to aggre to a second lot of testings as ive jus been left for 6yrs nearly.
my sypmtoms :
its hard to describe but the bestr way is i feel odd, like im here but not here - more like im drunk when im not.. i go spacey. light headed, semi conscous, cant talk, dizzy, slurry words, my eyes are sooooo sensitive especially to bright lights, even bright sunlight. i have tinglin, shakiness, twitchin, numbness, gaggin, short of breath, headaches/eye aches - both can be very painfull and last for days.. feelin my own pulses withn my body also feels like me chest is guna explode, i go from hot to freezin, stiffiness too to all lim thats jus some of them. doctors hav jus said its non epiletic and left it at that!
for 6yrs nearly ive lived with no answers and jus bein fobbed off with nothin and no one listenin to me. im 27yrs old now nearly 28, these started back in feb 2005.
i look forward to any input / opinions anythin. and thanx for readin. any questions id be happy to answer as werent sure wat to write. :-)
thanx!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
There are many Drs out there that do not have a clue as to how chiari can and does affect us....more over they do not feel it needs attention.
But the statement of no surgery is required if there is not a CSF flow obstruction is one of the main reasons for surgery....but, how it affects ur overall health is another reason....if u feel u r getting new symptoms and feeling worse, find a true chiari specialist and see what they say...
Plus it is 2 yrs since ur MRI, things may have changed...u just may need a new MRI.
"selma"
Hi
My name is Sandra I also live in the UK and have been experiancing the same things as you since 2005. I was admitted to hospital in 2005 withn suspected meningitus I had a high temperature and throwing up and a really BAD headache that lasted over 3 weeks even on super strong meds .I had fits in hospital that were ignored where my body shook one time the nurses were hooking me up for an ECG .They botched my lumbar puncture and snapped the needle sqirting spinal fluid everwhere which i have been told could have pulled my tonsils lower than they were. I noticed when I came out that all the stuff you talked about was happening. I get pins and needles down my left side mainly,I find i can go weak all of a sudden and drop things I have blacked out as in fainting but I also get periods where I can lose time ( difficult to explain) I have not been unconsious but I have no idea what I have been doing for the past couple of hours.I am very light sensitive especially in the winter months to the extent that I find it very hard to drive because all the tail lights and head lights merge into one.I had an eye test and I have one perfect eye and one -1 eye(the left) which is that slight a defect I dont need glasses all the time but I wear them in the cinema because things look a bit sharper. I had a raft of MRI's and tests in 2010 and was also told I had low lying cerebral tonsils by a private Neurologist at the Solihul Bupa Hospita Mr Iantorno he refered me to a Neuro Surgeon because he said the 7mm distension was consistent in his opinion to a Chiari malformation.The Neuro Surgeon Dr Ronan Dardis did more tests and talked to me as if I was a retard when I was trying to tell him about my symptoms up until this point I hadnt looked on line to find out what Chiari was , but I was so upset about not being taken seriously I wanted to see what Chiari was. I think my symptoms seem very consistent with what I have read , however the Neurosurgeon said Chiari 1 is a combination of low lying toncils along with the lack of flow of cerebral fluid and as on my MRI it had looked to him like there was enough space for the cerebral fluid to flow he couldnt do anything for me. So I am back to square one. I had to give up a well paid job because I had to work alone as I was a sales person on a development selling new homes , my employers were fed up of me taking time off with headaches and tests but piled on the work so I would resign so I couldn't sue them. I find it hard to function I am forgetful and feel like I have cotton wool in my head . Sometimes i feel like I am standing on the outside of my body watching myself do stuff its weird to say the least. I know exactly what you are going through but here in the UK no one seems to be willing to consider that low lying tonsils are a real problem.I set up my own business as I couldn't find anyone willing to give me a job with such a poor sickness record but I am finding my head is too bad to cope with all the records and paperwork side and I cant afford staff to help.As the neurosurgeon said my results are normal apart from the toncil thing I cant get financial help from the state so all the stress is now on my husband to fin extra money for us to live on .This is a crappy condition I wouldn't wish on anyone else I am frustrated and stressed beyond belief and even wonder if there is a common denominator in all this .I was living in Birmingham in 2005 but now live in Redditch I wonder if anyone else has this who has been symptomatic since 2005 maybe it is a new condition or something linked to a new virus that we may have had(look how they tried to keep bird flu quiet) ,we need to get together and lobby the docs to sort us out under fear of a law suit.
My name is Sandra I also live in the UK and have been experiancing the same things as you since 2005. I was admitted to hospital in 2005 withn suspected meningitus I had a high temperature and throwing up and a really BAD headache that lasted over 3 weeks even on super strong meds .I had fits in hospital that were ignored where my body shook one time the nurses were hooking me up for an ECG .They botched my lumbar puncture and snapped the needle sqirting spinal fluid everwhere which i have been told could have pulled my tonsils lower than they were. I noticed when I came out that all the stuff you talked about was happening. I get pins and needles down my left side mainly,I find i can go weak all of a sudden and drop things I have blacked out as in fainting but I also get periods where I can lose time ( difficult to explain) I have not been unconsious but I have no idea what I have been doing for the past couple of hours.I am very light sensitive especially in the winter months to the extent that I find it very hard to drive because all the tail lights and head lights merge into one.I had an eye test and I have one perfect eye and one -1 eye(the left) which is that slight a defect I dont need glasses all the time but I wear them in the cinema because things look a bit sharper. I had a raft of MRI's and tests in 2010 and was also told I had low lying cerebral tonsils by a private Neurologist at the Solihul Bupa Hospita Mr Iantorno he refered me to a Neuro Surgeon because he said the 7mm distension was consistent in his opinion to a Chiari malformation.The Neuro Surgeon Dr Ronan Dardis did more tests and talked to me as if I was a retard when I was trying to tell him about my symptoms up until this point I hadnt looked on line to find out what Chiari was , but I was so upset about not being taken seriously I wanted to see what Chiari was. I think my symptoms seem very consistent with what I have read , however the Neurosurgeon said Chiari 1 is a combination of low lying toncils along with the lack of flow of cerebral fluid and as on my MRI it had looked to him like there was enough space for the cerebral fluid to flow he couldnt do anything for me. So I am back to square one. I had to give up a well paid job because I had to work alone as I was a sales person on a development selling new homes , my employers were fed up of me taking time off with headaches and tests but piled on the work so I would resign so I couldn't sue them. I find it hard to function I am forgetful and feel like I have cotton wool in my head . Sometimes i feel like I am standing on the outside of my body watching myself do stuff its weird to say the least. I know exactly what you are going through but here in the UK no one seems to be willing to consider that low lying tonsils are a real problem.I set up my own business as I couldn't find anyone willing to give me a job with such a poor sickness record but I am finding my head is too bad to cope with all the records and paperwork side and I cant afford staff to help.As the neurosurgeon said my results are normal apart from the toncil thing I cant get financial help from the state so all the stress is now on my husband to fin extra money for us to live on .This is a crappy condition I wouldn't wish on anyone else I am frustrated and stressed beyond belief and even wonder if there is a common denominator in all this .I was living in Birmingham in 2005 but now live in Redditch I wonder if anyone else has this who has been symptomatic since 2005 maybe it is a new condition or something linked to a new virus that we may have had(look how they tried to keep bird flu quiet) ,we need to get together and lobby the docs to sort us out under fear of a law suit.
I experience symptoms very closely as to what you describe, fortunantly mine only last at max a day. They started when I was very young and I couldn't explain them other than I was sick, when I turned 19 I saw a doctor and was then able to describe them in detail. He ran some test but ultimatly sent me to a shrink, both of them saying it was in my head, I refused to accept that as I had no reason to make myself feel this way and truthfully a physicolgical disorder made no sence to me. FINALLY when I was in my early 20 I got my answer, what I suffer from is a complex migraine that is accompanied by Hypoglycemia or low blood sugar. I am 34 now and the migraines are rare, although I still do experience them. I have injections called Imatrex that will immediatly releive most of the symptoms. I hope you find this and it is a help, I know these things can be scary and you should discuss them with your doctor on a regular basis and push him to give you the answers you need. God Bless I will be praying for you.
LouiP
jus read this..
it doesnt show your email address.. so cant email you.. i hav jus sent a reply to your other message though.
feel free to ask me anythin. :-D
jus read this..
it doesnt show your email address.. so cant email you.. i hav jus sent a reply to your other message though.
feel free to ask me anythin. :-D
Hi,
Emza, please email me at ***@****.
I seem to have exactly every one of your symptoms and I have never had anyone else describe them so well as you. I would love to talk to you about what's going on, I am 21 and just started experiencing these problems and like you have been in and out of hospitals only to be told I'm fine. The low lying tonsils is the only thing that's come back abnormal. Please contact me. I'd like to bounce some thoughts around.
Louis
Emza, please email me at ***@****.
I seem to have exactly every one of your symptoms and I have never had anyone else describe them so well as you. I would love to talk to you about what's going on, I am 21 and just started experiencing these problems and like you have been in and out of hospitals only to be told I'm fine. The low lying tonsils is the only thing that's come back abnormal. Please contact me. I'd like to bounce some thoughts around.
Louis
Hi all, sorry ive not been on and commented on your comments - ive had a few bad days since Sunday - my head/ eyes and arm hav been playin up. Feelin a little better today though.
Selma -
thanx its nice to actually feel like I belong some place.
Wolf -
I do feel mad/anger at the doctors as they jus kept sayin im in denial of all kinds. The more I say im not the more they say I am. When really all I want is them to do their own investigation and make their own mind up.. But really all they seem to agree on is that its not epilepsy.. I said to me mom that all I want is to be able to label it incase there is medicine to help me..
Its been neary 6yrs and the roads been a bumpy one already, its hard at times. Even a task of cutting the grass with the strimmer take its toll on me, bright lights too, even watchin telly can too as well as sunlight! Its crazy how my life has to change because of this condition. Thank you for your kind words though!
Taylapj -
Ive been searching the net for specialists in the uk, but hav read a post on here givin Dr Sanj Bassi so guna look him up.. No harm in tryin ay!
Cmoeller -
Thank you for that infor on the specialist - ill certainly be lookin him up after replyin to the posts.
that’s exactly it - feelin like im standin outside rather than actually stood next to people wen in one of my zones. I actually hav full blown seizures although the neuro specialist has named them episodes now - its like an epileptic seizure but im semi conscious.. I always know when its guna happen but jus cant stop it, in and out of hospital and I moan as it’s a joke.. Theres loads of signs/symptoms to how I am/feel too many to write down, but its great to here im not alone.. I was beginning to think its all in me head.
All this Chiari is new to me, and getting to grips with the terms and stuff and tryin to grab all the information I can about it. If im honest it’s a scary feelin. Im jus in the process of changing doctors as ive moved and me old one wont see me. Hopefully ill get to see them by the start of nex week as I wanna question me MRI scan results. Fingers crossed ay!
I didn’t know that about pregnancy/labour and stuff - thanx for that - very interesting isn’t it.. After reading all I hav you everyones comments its like pieces are commin together and makin sense - thing is though how do I get a doctor to listen? Do I go pirate? Wat if I havent got it though?
Dkdean -
thanx! Its mad how no one has said this before to me - im soo glad I came across this site!
Taylapj -
jus wondered wat information you had on Dr Bassi then?
thanx again to everyone!! :-) x
Selma -
thanx its nice to actually feel like I belong some place.
Wolf -
I do feel mad/anger at the doctors as they jus kept sayin im in denial of all kinds. The more I say im not the more they say I am. When really all I want is them to do their own investigation and make their own mind up.. But really all they seem to agree on is that its not epilepsy.. I said to me mom that all I want is to be able to label it incase there is medicine to help me..
Its been neary 6yrs and the roads been a bumpy one already, its hard at times. Even a task of cutting the grass with the strimmer take its toll on me, bright lights too, even watchin telly can too as well as sunlight! Its crazy how my life has to change because of this condition. Thank you for your kind words though!
Taylapj -
Ive been searching the net for specialists in the uk, but hav read a post on here givin Dr Sanj Bassi so guna look him up.. No harm in tryin ay!
Cmoeller -
Thank you for that infor on the specialist - ill certainly be lookin him up after replyin to the posts.
that’s exactly it - feelin like im standin outside rather than actually stood next to people wen in one of my zones. I actually hav full blown seizures although the neuro specialist has named them episodes now - its like an epileptic seizure but im semi conscious.. I always know when its guna happen but jus cant stop it, in and out of hospital and I moan as it’s a joke.. Theres loads of signs/symptoms to how I am/feel too many to write down, but its great to here im not alone.. I was beginning to think its all in me head.
All this Chiari is new to me, and getting to grips with the terms and stuff and tryin to grab all the information I can about it. If im honest it’s a scary feelin. Im jus in the process of changing doctors as ive moved and me old one wont see me. Hopefully ill get to see them by the start of nex week as I wanna question me MRI scan results. Fingers crossed ay!
I didn’t know that about pregnancy/labour and stuff - thanx for that - very interesting isn’t it.. After reading all I hav you everyones comments its like pieces are commin together and makin sense - thing is though how do I get a doctor to listen? Do I go pirate? Wat if I havent got it though?
Dkdean -
thanx! Its mad how no one has said this before to me - im soo glad I came across this site!
Taylapj -
jus wondered wat information you had on Dr Bassi then?
thanx again to everyone!! :-) x
Thanks Carolyn it's nice to hear that someone else has seen dr bassi, I probably put that across wrongly to be fair, in my original post about him I did compliment him on his time and explaining of things, it's well worth giving him a call yes, I think I was just a bit put by about his quote that I didn't have chairi that's all. If you need details for dr bassi let me know ;-) you can see him on nhs if you don't mind waiting or £240 for a private consultant, it's my advice that you get your MRI scans first before seeing him as this coats alot to have it done private.
Just wanted to extend a welcome--and agree that you need to find a NS who is an expert in Chiari. That was the best information I have received as the other neuro's I saw said that this 'incidental finding' was just that--couldn't and wouldn't cause any of my issues. Something else to consider too (along with the pg/labor/delivery piece) is something my NS discussed--as we reach late 20's/early 30's, the spine, etc isn't as 'tight' as it was while we are growing up--hence allowing the tonsils to herniate. So a combination of labor and your age and the fact that there is the malformation all fit together for a perfect storm of symtpoms.
FWIW--My MRI also stated "low-lying cerebellar tonsils" and I didn't realize there was a name for that or that it could cause my symptoms until someone on the MS board (where I was visiting b/c I was told I had 'possible MS") said it was called a Chiari Malformation.
Not a fun journey to be on or one that any of us anticipate, but it is nice to have a good support group!!!
Kim
FWIW--My MRI also stated "low-lying cerebellar tonsils" and I didn't realize there was a name for that or that it could cause my symptoms until someone on the MS board (where I was visiting b/c I was told I had 'possible MS") said it was called a Chiari Malformation.
Not a fun journey to be on or one that any of us anticipate, but it is nice to have a good support group!!!
Kim
Ok before I comment on Emza...I just want ALL you guys in the UK to know about Dr Sanj Bassi . I have a friend that went to him b/c she couldn't get help from anyone else and she said he was absolutely wonderful. He also believes in Chiari 0 so taylapj..I would definitely check him out!!! One word of caution though...she told me that his NL was not so good...so stick with the NS!!
Emza... Sounds like you are in that horrible position I found myself in about a year ago...those spaced out, drunk feelings, where it's hard to talk...I remember so well!! For some reason I used to get those when I was in a social situation or in a big store..so I always thought it was anxiety. I used to feel like I was walking on a cloud and that I wasn't really part of the world, like I was standing on the outside. I never even thought that that might be considered a seizure...what I am sure of is that it was the pressure in my brain causing it. I am happy to say that since the surgery, I have not experienced that again. Also, your descriptions of your heart pounding, I had that so badly all the time and it is another thing that has eased off. Unfortunately, when you complain about these things, it is all too easy for a Dr to label them anxiety. I know that this has already been stressed but you need to find a NS that specializes in Chiari...google Dr. Bassi and give him a call!!! He was so patient and helpful with my friend, even though she still hasn't got to the bottom of what is wrong with her.
A comment on pregnancy...I believe a complicated delivery can have severe consequences relating to CM. My first in Feb. 98..basically got stuck so I was trying to deliver w/o being able to (if you know what I mean) so I went into back labor, his heart rate went down and I was rushed to an emergency Csection. The headaches began to get worse with that pregnancy and continued through all those years. I had two other deliveries (both by csection) and by the 3rd..I was in pain for the entire pregnancy (body wise), had constant headaches and I absolutely could not lie on my back or I would start to pass out. Now, even though you didn't deliver the baby naturally, we have to remember also that when they put the spinal tap in, they withdraw some CSF to be able to put the anesthesia in. It is my belief that having that procedure done can also cause more symptoms b/c when they withdraw the fluid it could pull the herniation downwards.
So it is very likely that your pregnancy did contribute or even start up your symptoms.
Keep plugging along and looking for the specialist that can help you...honestly, your symptoms are too familiar to be anything else!!!!
Good luck
Carolyn
Emza... Sounds like you are in that horrible position I found myself in about a year ago...those spaced out, drunk feelings, where it's hard to talk...I remember so well!! For some reason I used to get those when I was in a social situation or in a big store..so I always thought it was anxiety. I used to feel like I was walking on a cloud and that I wasn't really part of the world, like I was standing on the outside. I never even thought that that might be considered a seizure...what I am sure of is that it was the pressure in my brain causing it. I am happy to say that since the surgery, I have not experienced that again. Also, your descriptions of your heart pounding, I had that so badly all the time and it is another thing that has eased off. Unfortunately, when you complain about these things, it is all too easy for a Dr to label them anxiety. I know that this has already been stressed but you need to find a NS that specializes in Chiari...google Dr. Bassi and give him a call!!! He was so patient and helpful with my friend, even though she still hasn't got to the bottom of what is wrong with her.
A comment on pregnancy...I believe a complicated delivery can have severe consequences relating to CM. My first in Feb. 98..basically got stuck so I was trying to deliver w/o being able to (if you know what I mean) so I went into back labor, his heart rate went down and I was rushed to an emergency Csection. The headaches began to get worse with that pregnancy and continued through all those years. I had two other deliveries (both by csection) and by the 3rd..I was in pain for the entire pregnancy (body wise), had constant headaches and I absolutely could not lie on my back or I would start to pass out. Now, even though you didn't deliver the baby naturally, we have to remember also that when they put the spinal tap in, they withdraw some CSF to be able to put the anesthesia in. It is my belief that having that procedure done can also cause more symptoms b/c when they withdraw the fluid it could pull the herniation downwards.
So it is very likely that your pregnancy did contribute or even start up your symptoms.
Keep plugging along and looking for the specialist that can help you...honestly, your symptoms are too familiar to be anything else!!!!
Good luck
Carolyn
When Doctors dont give you a definite diagnoses it usually means they dont know what is going on, this is some thing most ppl with Chiari experience because it is something that Doctors dont see very often if ever in their practice, the only experience they have is what they learn in collage or medical school.
Chiari is usually an "incidental finding" and if this "incidental finding" dose not meet the criteria for a Chiari DX (some NS say a 3>5 mm hernia others say 5mm or more) then it is dismissed.
So find a Neurosurgeon with experience.....
Ray
Chiari is usually an "incidental finding" and if this "incidental finding" dose not meet the criteria for a Chiari DX (some NS say a 3>5 mm hernia others say 5mm or more) then it is dismissed.
So find a Neurosurgeon with experience.....
Ray
Sure it's most certianly normal!!! It's all these other weirdo's that do not have brain matter protruding into their spinal canal. Yes, those are the ones we need to worry about as these un-brain damaged individuals they are the ones with a problem.
Wolf is tired this morning :-)
Wolf is tired this morning :-)
Hahah go wolf have your moment, but your right i don't understand it, When i was looking for a chiari specialist i saw Dr Bassi website and i thought yeah he even has a section written on Chiari so he must know about it, and i'm sure he is great if your Chiari is bigger or you have a sphinx. Then you start to think ---- " what if i am being over paranoid about Chiari" But then i remember actually no! It's NOT NORMAL to have tonsils that herniate into the foramen magnum.....
Frankly.. I do not get it. Doctors have the same information available to them as everyone else. Perhaps more.. What does it take? Perhaps if someone like your good Quaker Bassi to have Chiari himself maybe then he would understand. But then I don't think it would do for any of us to wish this on anyone. I've met some who seem to be decent Dr's but still act like a retarded frog when it comes to Chiari. They just sit there and croak as loud as they can but don't do anything.
Just Wolf having an off moment...
Just Wolf having an off moment...
Maybe it will be mine and Emza1910 to find a UK specialist who's understanding and Chiari equipped haha
[ I did think Mr Bassi may have been the one, but considering he wrote in his report -" i do not believe Miss Taylor has Chiari, one is 'allowed' 6mm " ... hmmmm ] NEXT!
[ I did think Mr Bassi may have been the one, but considering he wrote in his report -" i do not believe Miss Taylor has Chiari, one is 'allowed' 6mm " ... hmmmm ] NEXT!
I agree with selma... hummm.... guess for some reason I most often do agree with her... Why is that lil sis?
No, reading through these posts I was trying to put myself in your position again. Not knowing what is going on. Fighting one godlike quackerjackfakedoctor after another. Well one thing popped into my mind. I honestly believe that if I'd accepted or acknowledged that the anxiety was a problem things would have been easier. On the road to finding an answer [since childhood for me] I couldn't count how many times the quacks played it off to anxiety. In my mind I believed it wasn't anxiety but they where making me anxious/mad because of all the non-help. But looking back now I was anxious it was just they seen it and I didn't. If I had it to do again I'd have asked for something to help with the anxiety. The stress of anxiety tends to make the symptoms more severe.
As selma mentioned, the road can be bumpy and long... UK... I only wish that I did know someone there to help but no... Hang in there. For what it's worth from a non-doctor I agree with selma in that it sounds to me like you are in the right place on the right track.
Wolf
No, reading through these posts I was trying to put myself in your position again. Not knowing what is going on. Fighting one godlike quackerjackfakedoctor after another. Well one thing popped into my mind. I honestly believe that if I'd accepted or acknowledged that the anxiety was a problem things would have been easier. On the road to finding an answer [since childhood for me] I couldn't count how many times the quacks played it off to anxiety. In my mind I believed it wasn't anxiety but they where making me anxious/mad because of all the non-help. But looking back now I was anxious it was just they seen it and I didn't. If I had it to do again I'd have asked for something to help with the anxiety. The stress of anxiety tends to make the symptoms more severe.
As selma mentioned, the road can be bumpy and long... UK... I only wish that I did know someone there to help but no... Hang in there. For what it's worth from a non-doctor I agree with selma in that it sounds to me like you are in the right place on the right track.
Wolf
COMMUNITY LEADER
U had a DX of cerebral tonsils lying low...yes?..then u belong....no worries, u will get a dr to listen...it took the better part of my life and I was so happy to be validated by a dr that understands this condition and what we all go thru.
For drs that are not well educated on chiari , they tend to look for other issues and not the real cause.
Hang in there...the road can be bumpy, but not being alone can be helpful : )
"selma"
For drs that are not well educated on chiari , they tend to look for other issues and not the real cause.
Hang in there...the road can be bumpy, but not being alone can be helpful : )
"selma"
hi selma,
thanx for the welcome, its nice to come n read posts and see that im not alone even if i havent been given any answers to my problems. theres soo many that i can relate to and my heart goes out to all.
i jus want jus one doctor /specialist or whoever to jus listen to me, and actually know what he/she is doin. but well ive waited nearly 6yrs feels like im never guna get to the bottom of it.
the last neuro dude i saw in april of this year mentioned that my symptoms all point to 'episodic ataxia' which ive been doin some research on along with some others and theres a few things the signs and sypmtoms sound alike but also that some are linked too. but yet its tryin to find a doctor that listens as they all reackon they know everythin.. jus soooo annoyin!
jus wish this bloody headache n eye ache would go had it all day now. and doesnt feel or seem like its guna go anytime soon. annoyin or wat.. not had one for a while, well not this bad anywayz.
anywayz thanx again, and i already feel welcome. although i keep askin meself i i belong here of not.
confused!!
thanx for the welcome, its nice to come n read posts and see that im not alone even if i havent been given any answers to my problems. theres soo many that i can relate to and my heart goes out to all.
i jus want jus one doctor /specialist or whoever to jus listen to me, and actually know what he/she is doin. but well ive waited nearly 6yrs feels like im never guna get to the bottom of it.
the last neuro dude i saw in april of this year mentioned that my symptoms all point to 'episodic ataxia' which ive been doin some research on along with some others and theres a few things the signs and sypmtoms sound alike but also that some are linked too. but yet its tryin to find a doctor that listens as they all reackon they know everythin.. jus soooo annoyin!
jus wish this bloody headache n eye ache would go had it all day now. and doesnt feel or seem like its guna go anytime soon. annoyin or wat.. not had one for a while, well not this bad anywayz.
anywayz thanx again, and i already feel welcome. although i keep askin meself i i belong here of not.
confused!!
COMMUNITY LEADER
HI and welcome to the Chiari forum.
I am so sorry, but sounds like u have experienced the royal run around that many chiarians unfortunately travel.
I also wish we had a list of Drs for the UK....but sadly we do not at this time...I can suggest u look into the Ann Conroy Trust for more info on Drs and chiari in the UK.
http://theannconroytrust.org.uk/
This org is most likely the best to get names of drs.
Know u r not alone in the way drs have treated u...all seem to think we all have migraines, or anxiety.
We r glad to have u join our little family, but we r not happy for the reasons u had to seek us out.
"selma"
I am so sorry, but sounds like u have experienced the royal run around that many chiarians unfortunately travel.
I also wish we had a list of Drs for the UK....but sadly we do not at this time...I can suggest u look into the Ann Conroy Trust for more info on Drs and chiari in the UK.
http://theannconroytrust.org.uk/
This org is most likely the best to get names of drs.
Know u r not alone in the way drs have treated u...all seem to think we all have migraines, or anxiety.
We r glad to have u join our little family, but we r not happy for the reasons u had to seek us out.
"selma"
Wolf,
i have been tryin but all these walls keep blockin me, ive no idea the really reason/problem and no one will help me either. so i do feel lost and kinda scared! i feel for soo long ive got fobbed off by fake promises, fake answers. i know my body better than any doctor and yet no one seems to wanna listen or take note or point me in the right direction - ggrrr so frustratin..
all i seem to here is 'this may be one problem that there is no answer for, that you'll be no closer to ever findin the answer' any good doctor wouldnt let anythin go past them without findin out to why and the wat .
how do i find a chiari specialist in my area - ive screached this board but cus im new not sure im lookin in the right place, ive followed some links but doesnt seem to take me there - kinda lost. if it helps i live in the uk - birmingham to be exact. :-D if you or anyone could point me in the right direction id be grateful.
im honest with all the doctors i see, although i do forget things as im useless, embrassin or not i dont care as i know truthfull should get me answers so far nothin seems to get me any answers jus a slap against that brick wall. everythink any doc has thought it could be - seemed to be wrong - ive gone with there thoughts and yet nothings words. if anythin seemed to make it worse.
im am indestructable, well im still goin so must count as somethin.. hehee. i dont see it as safe, i do see it as dangerous.. i even moved house so i could be closer to family incase anythin happened. i dont lock doors even at night, i hav my family on speed dial too. the last really bad time i had a bad one - it was after gardenin and i knew it was commin, the pain in my head, my body - but for my children to see it was worse.. an ambulance was called and the blood from the tubes and hook ups was enough to make someone think id been murdered in me bed.. wat made it worse was cus i couldnt stop shakin, i was cold yet my temperature was too high. its horrible knowin and feelings wats about to happen and havin no control over it and no answers either.
thanx for your words though. its nice to share all this n hav someone listen. :-)
i have been tryin but all these walls keep blockin me, ive no idea the really reason/problem and no one will help me either. so i do feel lost and kinda scared! i feel for soo long ive got fobbed off by fake promises, fake answers. i know my body better than any doctor and yet no one seems to wanna listen or take note or point me in the right direction - ggrrr so frustratin..
all i seem to here is 'this may be one problem that there is no answer for, that you'll be no closer to ever findin the answer' any good doctor wouldnt let anythin go past them without findin out to why and the wat .
how do i find a chiari specialist in my area - ive screached this board but cus im new not sure im lookin in the right place, ive followed some links but doesnt seem to take me there - kinda lost. if it helps i live in the uk - birmingham to be exact. :-D if you or anyone could point me in the right direction id be grateful.
im honest with all the doctors i see, although i do forget things as im useless, embrassin or not i dont care as i know truthfull should get me answers so far nothin seems to get me any answers jus a slap against that brick wall. everythink any doc has thought it could be - seemed to be wrong - ive gone with there thoughts and yet nothings words. if anythin seemed to make it worse.
im am indestructable, well im still goin so must count as somethin.. hehee. i dont see it as safe, i do see it as dangerous.. i even moved house so i could be closer to family incase anythin happened. i dont lock doors even at night, i hav my family on speed dial too. the last really bad time i had a bad one - it was after gardenin and i knew it was commin, the pain in my head, my body - but for my children to see it was worse.. an ambulance was called and the blood from the tubes and hook ups was enough to make someone think id been murdered in me bed.. wat made it worse was cus i couldnt stop shakin, i was cold yet my temperature was too high. its horrible knowin and feelings wats about to happen and havin no control over it and no answers either.
thanx for your words though. its nice to share all this n hav someone listen. :-)
I could be way off base... but IF I were you, knowing what I know now. NOTHING would stop me from finding a NS who regularly practices a speciality with Chiari. JMO but don't take their word for it as with too many docs you are only a paycheck not a patient. It's easy to be nice to your face, anyone can do it. One of my favorites is "Yes, we do about a hundred a year like this" strange how many times they use that phrase. When I hear it we're out the door. A doctor that you entrust with your body 'must' above all be honest with you.
The only one who will understand the effects that chiari can have on your body is a doctor who deals with it every day. IMO - you owe it to yourself and your family to go see the Chiari Doctor, tell them upfront, don't hide any symptoms [some chiari symptoms can be embrassing] but just lay it all his lap. How you feel, the mental symptoms you mention here, are very important. I could be way off base as there could be other options of course, but it sounds as though your other options have been covered only to still have no answer, correct?
BTW- IN my book, any parent whose children are TRUELY loved by their parent... well perhaps they are a Princess. Our children see us as indestructable, we can handle anything when they are young. Perhaps that is good that your's do as in some ways it may be safer for them at this young age to not fully understand. My children 16/20 still call me Daddy or Dadums... some of their friends mock them for it but they do anyway.
Wolf
The only one who will understand the effects that chiari can have on your body is a doctor who deals with it every day. IMO - you owe it to yourself and your family to go see the Chiari Doctor, tell them upfront, don't hide any symptoms [some chiari symptoms can be embrassing] but just lay it all his lap. How you feel, the mental symptoms you mention here, are very important. I could be way off base as there could be other options of course, but it sounds as though your other options have been covered only to still have no answer, correct?
BTW- IN my book, any parent whose children are TRUELY loved by their parent... well perhaps they are a Princess. Our children see us as indestructable, we can handle anything when they are young. Perhaps that is good that your's do as in some ways it may be safer for them at this young age to not fully understand. My children 16/20 still call me Daddy or Dadums... some of their friends mock them for it but they do anyway.
Wolf
ChiariWolf,
I understand about the doctor thing but to me its more of a case of seein if theres others that suffer like I do, and I guess the feelin that im not alone with this as right now I soo do. My family try and understand but they cant possible as its me that experiences the pain, the feelin.
In feb 2005 to be precise it was the 22nd feb 2005.. Remember it sooo well.. And not jus cus it was when my daughter was born. I got to 4cm dilated and that’s when everythin went wrong.. I was on the gas and jus remember feelin light headed and very very hot which I described as like the room was full of heaters burnin at me. The nex I remember I was shakin violently on the bed, came too stared at my twin sister and went back into it. I was rushed in for an emergency c section - with doctors thinking it was pre clampsia but it wasn’t as my seizures continued even after my baby was born.. Tests were done - CT, EMG, MRI, EEG and some others I cant remember as there was soo many - yet docs say all was ’normal’. they even tried to say my seizures were down to sleep deprivation, despression all kinds. Ive been in and out of hospital n yet everythin comes back normal according to doctors with no real answers. The only specialist ive seen are neurologists..
I hav heard that trauma can cause your body to react n deal in all kinds of ways, but how can this be possible. When they first started happenin back in 2005 and even now from time to time it feels like im an infant and hav to learn even the simplist thing ie talkin, walkin. Sometimes its like my brain wants to talk but nothing comes out me mouth, that it feels like im my bodys dyin on me from the inside. I feel so helpless and it is hard. Hard to deal with my symptoms even washin up or opening a can of something can be hard at times as or even talkin sometimes, I tried goin back to college as well after to improve me career outlook but found even that was hard - was like my brain could only take so much at any one time.
I always hug my children, they say mommys a princess.. They do ask questions - they ask why does mommy go to sleep in the strangest places and why do I talk funny sometimes. Bless em. But they say they ent scared which is something. My children are 5(6 feb) and the other has jus turned 4 last week.
And thanx! :-D
I understand about the doctor thing but to me its more of a case of seein if theres others that suffer like I do, and I guess the feelin that im not alone with this as right now I soo do. My family try and understand but they cant possible as its me that experiences the pain, the feelin.
In feb 2005 to be precise it was the 22nd feb 2005.. Remember it sooo well.. And not jus cus it was when my daughter was born. I got to 4cm dilated and that’s when everythin went wrong.. I was on the gas and jus remember feelin light headed and very very hot which I described as like the room was full of heaters burnin at me. The nex I remember I was shakin violently on the bed, came too stared at my twin sister and went back into it. I was rushed in for an emergency c section - with doctors thinking it was pre clampsia but it wasn’t as my seizures continued even after my baby was born.. Tests were done - CT, EMG, MRI, EEG and some others I cant remember as there was soo many - yet docs say all was ’normal’. they even tried to say my seizures were down to sleep deprivation, despression all kinds. Ive been in and out of hospital n yet everythin comes back normal according to doctors with no real answers. The only specialist ive seen are neurologists..
I hav heard that trauma can cause your body to react n deal in all kinds of ways, but how can this be possible. When they first started happenin back in 2005 and even now from time to time it feels like im an infant and hav to learn even the simplist thing ie talkin, walkin. Sometimes its like my brain wants to talk but nothing comes out me mouth, that it feels like im my bodys dyin on me from the inside. I feel so helpless and it is hard. Hard to deal with my symptoms even washin up or opening a can of something can be hard at times as or even talkin sometimes, I tried goin back to college as well after to improve me career outlook but found even that was hard - was like my brain could only take so much at any one time.
I always hug my children, they say mommys a princess.. They do ask questions - they ask why does mommy go to sleep in the strangest places and why do I talk funny sometimes. Bless em. But they say they ent scared which is something. My children are 5(6 feb) and the other has jus turned 4 last week.
And thanx! :-D
Firstly, I'm not a doctor and thus can't dx your problems.
That said, I'm sorry to hear of your physical/mental problems. No doubt a few emotional fluctuations as well with all this going on. Please, give yourself a hug! Honestly! All this can be a drain on anyone, esspecially the 'non answers' from some medical professionals.
Many of the symptoms you list here sound so very familar. Let me ask you a couple of questions. Firstly think back to Feb 05.. did anything in particular happen around that time? You mention the birth of your child was this a natural birth? The reason I ask is that the birth process is stressful on any woman. But with some conditions in our bodies it can effect other things.
Have you ever been seen by a NL or NS that 'specializes' in the treatment of Chiari Malformation? It is hard to accept but there are many Doctors out there who refuse to admit that Chiari is real. Trust me it is very real. And because the radiologist doesn't dx it on the MRI, CT or X-ray doesn't mean a thing as they rarely do. It is a birth defect and many dismiss it as incidental because of that thus they won't mention it. In some folks it may not cause any noticible problems for us until we undergo some sort of stress or trauma.
Just a suggestion, but read a few of the posts on the Chiari Forum here [perhaps you already have]. But you will notice that every symptom that you note here is one that 'can be' associated with Chiari. Doesn't mean that is your problem. But with 6 years of trying under your belt I would definately get ahold of a specialist, we can help if you want just post the general area [not your home address obviously as this forum is not private] and perhaps someone here can direct you to a doctor who has served them well. Or if you prefer there is a short list of doctors that others have been satisfied with here on the list.
Now about that hug... it would seem that perhaps you have a 6 year old child who needs one from his momma as well! :-)
Wolf
That said, I'm sorry to hear of your physical/mental problems. No doubt a few emotional fluctuations as well with all this going on. Please, give yourself a hug! Honestly! All this can be a drain on anyone, esspecially the 'non answers' from some medical professionals.
Many of the symptoms you list here sound so very familar. Let me ask you a couple of questions. Firstly think back to Feb 05.. did anything in particular happen around that time? You mention the birth of your child was this a natural birth? The reason I ask is that the birth process is stressful on any woman. But with some conditions in our bodies it can effect other things.
Have you ever been seen by a NL or NS that 'specializes' in the treatment of Chiari Malformation? It is hard to accept but there are many Doctors out there who refuse to admit that Chiari is real. Trust me it is very real. And because the radiologist doesn't dx it on the MRI, CT or X-ray doesn't mean a thing as they rarely do. It is a birth defect and many dismiss it as incidental because of that thus they won't mention it. In some folks it may not cause any noticible problems for us until we undergo some sort of stress or trauma.
Just a suggestion, but read a few of the posts on the Chiari Forum here [perhaps you already have]. But you will notice that every symptom that you note here is one that 'can be' associated with Chiari. Doesn't mean that is your problem. But with 6 years of trying under your belt I would definately get ahold of a specialist, we can help if you want just post the general area [not your home address obviously as this forum is not private] and perhaps someone here can direct you to a doctor who has served them well. Or if you prefer there is a short list of doctors that others have been satisfied with here on the list.
Now about that hug... it would seem that perhaps you have a 6 year old child who needs one from his momma as well! :-)
Wolf
hey taylapj,
thanx for the support.. :-D i certainly have been through alot and there seems to still be no light at the end. i feel like im goin round and round in circles with no one seem to wanna help or listen. havin to deal with this and bring up my two girls - which i worry as anythin could happen whilst a hav my seizures..
as far as a know ive not been given a follow up appointment. and the letter also states that i didnt go to an EMG appointment which i dont recall receivin notice of.. i do hav another appointment for somethin else - ive gotta hav an injection into my arm muscle - that appointment is in oct.
its jus annoyin because its been goin on sooo long now, it is part of me part of my life - people say to me they admire me for copin - thing is its not a case of copin - its a case of havin too for my children..
thanx again :-D
thanx for the support.. :-D i certainly have been through alot and there seems to still be no light at the end. i feel like im goin round and round in circles with no one seem to wanna help or listen. havin to deal with this and bring up my two girls - which i worry as anythin could happen whilst a hav my seizures..
as far as a know ive not been given a follow up appointment. and the letter also states that i didnt go to an EMG appointment which i dont recall receivin notice of.. i do hav another appointment for somethin else - ive gotta hav an injection into my arm muscle - that appointment is in oct.
its jus annoyin because its been goin on sooo long now, it is part of me part of my life - people say to me they admire me for copin - thing is its not a case of copin - its a case of havin too for my children..
thanx again :-D
Hi Emza,
Welcome to this place, all though as Selma would say were sorry for the circumstances in which you sought this place out.
I'm replying to simply offer a hand of support, you sound like you've been through the mill with all this. There's plenty of people here that will offer advice and guidance.
Have you been given a follow up appointment with the Neurologist to discuss your results yet?? This is important so YOU can ask the questions you need to reassure your self I only ask because i understand the need to google, but sometimes this can cause unnecessary panic
;-)
Welcome to this place, all though as Selma would say were sorry for the circumstances in which you sought this place out.
I'm replying to simply offer a hand of support, you sound like you've been through the mill with all this. There's plenty of people here that will offer advice and guidance.
Have you been given a follow up appointment with the Neurologist to discuss your results yet?? This is important so YOU can ask the questions you need to reassure your self I only ask because i understand the need to google, but sometimes this can cause unnecessary panic
;-)
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