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If you do not have CSF blockage does that mean that the malformation ar...
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If you do not have CSF blockage does that mean that the malformation are not the cause of your symptoms

I am very thankful that I found this website.  It is extremely scary to find out that you have very serious symptoms that some doctors can dismiss as anxiety or stress.  I am truly amazed of the lack of knowledge of Chiari malformation!  I  Even at this very minute, finding others with the exact same symptoms, I am in some sort of disbelief.  The first Neurologist who probley never looked at my films told me my MRI was normal.   He sent me on a goose chase of cardiology and by the way my heart is fine.  Long story short, my second Neurologist repeated the MRI and told me I had Arnold Chiari Malformation Type 2 and that it was seen in the findings of my first MRI, but not included in the impression.  I was sent to a Neurosurgeon’s Nurse Practioner who said it was something I was born with but not the cause of my symptoms if I did not have CSF blockage.  They are ordering more tests but if there is no blockage does this mean that I don’t have this?  I am so confused.  Anyway, I guess for me, these appointments of disappointment and frustration left me to almost believe that maybe I was doing this to myself or just maybe I do have anxiety.  After being on this site for ten minutes I don’t feel like a crazy person!  Thank you to everyone!   O B T W, my question was about the CSF blockage.  
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hello and welcome to the forums.  This has been a god send for me as well..  I have symptoms but no doc has said it is for sure a chiari yet.  The MRI show little herniation and they didnt even bother to test for CSF blockage.  The frustration continues.      

What every here has advised me is to collect everything films reports and what not and find a Chiari specialist and  go from there.   also what symptoms are you having?

the others on here are much more helpful and know allot more about this.

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777726_tn?1314577041
I had surgery for chiari last spring.  I did not have CSF and had over 40 symptoms, all due to the chiari.  I went through 9 years of testing and just about every other condition was ruled out.  You do not need to have CSF to have symptoms from your chiari.

Susan
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620923_tn?1393294254
Hi.....I am not sure if the nurse u spoke to was talking off the cuff or repeating something told to her by the NS.

Did u have a CINE MRI?...this is a flow study to determine if u have a CSF blockage.

Criteria for susrgery tend to be a CSF blockage, symptoms and quality of life.....if u do not have  a CSF blockage u still have chiari. Symptoms  can cycle and can increase over time.....

Type II chiari is not common even here on the site most if not all but one or two have had Chiari II.....Size of herniation should not be a factor, but NS's not well informed on chiari do use it to determine if it is considered chiari or not. Many with chiari 0 can not get NS's to treat them even tho they r symptomatic.

Do u know ne other info from ur dx?

And again to say, CSF blockage does not make ur condition chiari or the lack of blockage take it way......it just helps determine when surgery intervention is suggested.

"selma"
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Hello everyone, thank you for all the replys.  My latest MRI show 5mm cerebellar tonsillar ectopia with crowding of structures of the foranem magnum.  C5-7 small disc bulge/disc-osteophyte complex with minimal flattering of the ventral surface of the thecal sac. c7-T1 mild diffuse disc bulge with mild joint hypertrophy and mild foraminal narrowing ( to sum it up).  I am scheduled for x-rays of the cervical neck and yes I do believe CINE MRI.  I did find a Chiari specialist in Houston from the UT Medical branch, I wonder if I should let him do all the studies??  I am not sure why they would say type 2, esp when I was told by one doctor your legs are not effected and my symptoms are not the same everyday.....taliking about feeling crazy, I know how that feels!

All of my symptoms are: numbness/pins and needles/electrical shocks depending on a good day or bad day; in the face, hands, legs and feet.  I have what I call "rolling" headaches, or sometime pressure headaches.  I have pressure in my neck and shoulders, sometimes my arm feel real heavy.  i feel like everythings shifts, I get off balance alot!  Vertigo is terrible!  My legs hurt alot, they go out or get real wobblie.  They have gone completely numb 3 or 4 times where I fell on the floor.  My memory stinks!  I think the worst of it all is the pins and needles in my eyes and sometime they jerk like....very weird!!!    The facial pain is terrible also and I hate when my tongue goes numb.  What I don't get, are their such things as flares with this?  MS was alos thrown around but I do ot have lesions on my brain.
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620923_tn?1393294254
Hi..yes it is possible to have flares...I described mine as cycling.....
the symptoms u mention sound like what most here have as well.

If ur dr is a chiari dr deff let him do all the studies...he /she will know how to seet them up to get the proper info. And to rule out other conditions realted to chiari.

When u do see this dr and if u feel he is well informed on chiari ...please add him to the list.

Please keep us posted
"selma"

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Hi
I am sorry you are experiencing these horrible symptoms, I can identify with most of them. I have Nystagmus (downbeat) witch is a CM related condition where your eyes flick to one side and down then drift back to normal, this happens very quickly and can be hard to see but there are tests done to dx it. This is also common with vertigo….
i also have lower lim problems....
Like selma described I get cycles of different symptoms and this seems to be common with CM patents…  
I hope things improve for you soon

Ray
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November 17 was the day that I was going to see the Chiari doctor but they moved me to the end of November. I work for an OBGYN who is helping me find more doctors in our area, but I got to tell you there are not many.

Nystagmus, that is the name that the Neurologist diagnosed.  It makes me feel like things are shifting.  Thank you all for your support.  In a weird way I feel a little better knowing I am not alone.

Have a great weekend
Theresa
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620923_tn?1393294254
HI Theresa,

Glad u feel comforted in not being alone...that is what is soooooooooo great about this forum.,...the support and the I am not alone feeling....it's a valadation too...that u r not crazy or making ne of it up.

We r here.... : )

"selma"
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I have been experiencing debilitating migraines and recently had an MRI which discloses the following:  Cerebellar tonsils are approximately 4mm below foramen magnum and low lying.  Cerebellar tonsils do not have beaked appearance and fourth ventricle does not have any other findings to suggest a Chiari malformation and noted as incidential finding.   Is this finding a indicator of Chiare malformation 0?  Currently being treated with Maxalt and Medrol to break the migraine cycle for the past four days and as soon as the meds wear off, my head starts throbbing again.
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620923_tn?1393294254
Hi  and welcome to our Chiari forum.

The description of low lying tonsils 4mm is below what many drs use as a guide to determine chiari. Tonsil herniation 5mm and above is considered chiari. However, there r some chiari specilaists that believe herniations under 5mm can  cause symptoms and have termmed it chiari 0.

As for how and what it is treated with is by dr.....they may all have a diff approach and may even use diff approaches for diff patients as we all respond diff.

I am not sure if ur dr is a chiari specialist, but that is the best place to start. Having chiari 0 can result in chiari I if, u have an injury or fall....it can trigger it to grow.If symptoms increase...u need to be rechecked. ....MRI';s should be redone at 6 month intervales if there is alot of symptoms...if not once a yr is what most drs seem to do.

Only u and ur dr can decide which method of pain management is best for u.

Do be sure u r checked for other chairi related conditions....like a syrinx, tethered cord, intercranial hypertension, craiospinal instability....EDS....and more.

Glad to have u here, and I hope we offer u the info and support u seek,

"selma"
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Can you please tell me if you think the following is due to Chiari (mine is considered Chairi .05 or Chairi Zero, with cervical and thorasic sryinges)
I was using my right hand to prune some branches off a shrub. As I was squeeezing( very hard) the pruning shears, (I gues the blades were dull) I felt a wierd pain run from my arm to my neck to the back of my head and up to behind my right eye.
I stopped what I was doing and rested. The next day when I got out of bed, I was barely able to move me neck, had a stabbing headache in the back of my skull radiating the same way it did when I was pruning the shrub.
No medication helped the pain, I couldn't turn from side to side or put my head back or forward. This lasted for the next 36 hours and now it has "calmed down" to a very mild pain.
I went to see my arthritis DR today and he said, it doesn't sound like an episode of arthritic pain. And, of course all of the Neurosurgeons I saw in the past said that small Chairi's adn thin syringes DO NOT cuase ANY symptoms or pain.
WELL...what else can it be?
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620923_tn?1393294254
Not being a dr I can't say for sure...there r different camps on chairi 0 even within the chiari specilists  field.

There r so many that feel a syrinx if thin will not cause symptoms however there r many with them have strangely all have similar symptoms...same with chairi 0...they r also told u will not have symptoms at  that size and yet we know there r many that do and the symptoms r the same and some times more than those with a larger herniation.

Have u been to a chiari specialist?.I see u r in FL...did u see Dr Green?

"selma"
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I found this on another website.  I was touched and wanted to share it for those who may not have come across this.  It is written by Sheila Reilly.  (Sheila if you ever read this, I want to thank you!!!!!)


The Chiarian’s Creed

I promise to accept the fact that I have Chiari
Malformation, a neurological disorder which will
limit my abilities in my everyday life.

While I will always have Chiari, some days will be
good and some days will be bad. I will be thankful
for the good days and try to make the most of them.
When I am having a bad day, I will try to remember
that most likely it will not last.

When I am having a bad day, I will listen to my body,
and get the rest that I need. I will let my family
know that I am not feeling well, because they cannot
read my mind.

I will not feel guilty about resting, because I will
eventually begin to feel better, and in the long run,
it will also benefit my family. They will not become
malnourished if they eat peanut butter and jelly
sandwiches for dinner.

I will not feel guilty or worry about the work that
is not getting done while I am resting. The world
will not all apart without me, even though it looks
like it already has.

I will not let anyone else make me feel guilty for
taking time out for myself. They will never understand
exactly what I am experiencing, the pain that I feel,
the exhaustion that I feel. They will never understand
the fear that I feel when my symptoms creep up on me,
and land me flat on my back.

I promise not to feel sorry for myself when I am
feeling bad, because there are a lot of people out
there who are in worse shape than I am. I will not be
sorry for what I don’t have, but be thankful for what
I do have.

I promise to learn a lesson from my illness, which is
not to take life for granted. I will enjoy every moment
that was given to me, and be thankful for the times
that I can smile and laugh.

I will try to help others who also suffer from my
condition. There are many confused and frightened people
who need to hear comforting words from someone who has
been there. There are many people who need me to take
his or her hand and be pointed in the right direction.

Lastly, I will not ask, “Why me?” While Chiari has
weakened my physical body, it has strengthened my heart,
my soul, and my spirit.

Written by: Sheila Reilly


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620923_tn?1393294254
yeah, I have seen this several times...was recently posted here...well written !!
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Neurosurgeon does not want to do surgery because there is no obstruction.  So i know I should be happy because who wants to have surgery...but now what.  He agreed that a lot of my symptoms are from the ACM but I also have other diagnoses that are not being properly treated for.  So here I go, back to the neurologist and switch medications...
Sorry, I just want this to be over.  I am flip flopping on excepting any of this! UUUUUURRRRRRRRGGGGGGGGGGGGGG
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620923_tn?1393294254
U say u have other conditions that r being maintained, may I ask what they r? I have DDD, spinal stinosis, a Hiatal hernia, acid reflux, Ehlers -Danlos, tethered cord and Hashimoto's thyroiditis....I think that all of em....lol....

I hope u can get ur symptoms under control...I do understand ur frustration.

"selma"
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Hi everyone, ive searched everywhere for a site like this, basically i have had my MRI report back, am waiting for neuro consultant appointment, but it says

" the cerebella tonsils herniate into the foramen magnum, However they appear normal shape, there is fullness at the level of foramen magnum with obliteration of fluid space"

been poorly since last October, headaches, vertigo [ with flashes of purple lights] 'electric shock' type pain in arms, legs, neck, wrists and knees and loss of hair. I have episodes of being bed bound for a few days at a time, bit like incoheriant [sp] very tierd all the time, i was refered to neurologists cause of the bad headaches and have since had MRI with this plus - Mild scoliosis concave to right lumber / Disc protusion at c3-4 impinging of exciting left nerve and loss of phsiological cervical lordis /slight assymetry of temporal horns with the right being larger. as well as 2 recent A&E trips for extreme abdominal pain which has since shown in a ultrasound as both kidneys diolated with the left being larger and has stagnent urine in, No kidney stones present in the kidneys so gotta have some dyd injected.

My neurologist has just really upset me and said i cant get an appointment untill septemeber, and she said 'it's not a brain herniation' in a mannor which made me feel like i have no clue whats going on.

This has been so on going, and ive found the NHS to be less than helpfull, im for ever having appointments cancelled and moved, all i want to know is what does this mean for me ........

Thanks so much in advance
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620923_tn?1393294254
HI..welcome to the Chiari forum.

I am so sorry ur dr is giving u the royal chiari treatment...that is  the fact that most drs do not have a clue and we the patient gets frustrated....u need to find a chiari specialist to get someone to take u and ur condition seriously.

Were u in a MVA that u have a loss of ur cervical lordosis?....this can be helped with PT and massage, but be sure they know chiari and do not manipulate ur neck...the muscles in ur shoulders and back will be affected by the loss of lordosis.May be a result of whip lash and why I asked about a MVA.

Ur report also states the obliteration of fluid space...so I believe they r saying u have a CSF blockage......but u deff need to get to a specialist and have a  CINE MRI to find this out for sure...the report is an opinion of a radiologist...some may know a bit more of chiari that a dr....but best to see the true experts.

Keep a log of ur symptoms...what they r..how bad and what u did that day...ect so when u do get in to see someone u have a record of it...

I am happy to have u join our family here, but sorry for the reason u had to seek us out.

"selma"


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1375148_tn?1323170521
Thanks so much selma, yes i simply wanted to see if i was being silly and reading to much into it all i guess,  i just can't believe my neurologist today saying in a flippant manor 'its not a brain herniation'  i was like, really? So you must've have sent me the wrong report then!! deary me, so you have all gone through this in one way or another huh?? i haven't been diagnosed with anything as yet, that would actually mean seeing a consultant lol and she's not 'available' until 4th august now, bearing in mind i should have seen her at the start of April, 3 monthly checks, lol jokes!!!

Im so glad i found this forum guys, i have been so stressed today and even contemplated diagnosing myself with moonch - housens- by -proxy [cant spell] ha ha
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1375148_tn?1323170521
Were u in a MVA that u have a loss of ur cervical lordosis?....this can be helped with PT and massage, but be sure they know chiari and do not manipulate ur neck...the muscles in ur shoulders and back will be affected by the loss of lordosis.May be a result of whip lash and why I asked about a MVA.
Whats MVA mean?? i had wiplash a few years ago from a patient asult i used to work in forensic mental health unit. i had PT and acupuncture for 3 months because of it.
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620923_tn?1393294254
HI...I was finally dx'd in Feb of '08 and did not get to a specialist until March of '09...yeah we all get the run around...yes u have it ...no u don't....the best thing is to not get too upset when u get those types of attitudes and push until u find a dr that will explain it all to u...once u found a dr u r comfortable with the rest falls into place : )

"selma"
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620923_tn?1393294254
Yes in 1975 I was in a MOTOR VEHICLE ACCIDENT...MVA.....and I had whiplash...but even a fall or a ride on a roller coaster can cause this...in fact many soldiers get it from the way they hold themselves at attention...theirs is called soldier's neck...

I did see a chiropractor well b4 I knew I had chiari...and chiro's r not someone with chiari should be seeing unless they know chiari and do not manipulate ur neck....I did not get a complete reversal but it is soooooooooo much better than it was....mine went 14 yrs undx'd...teh whiplash....so all my muscles twisted in the opposite direction causing the loss of lordosis...my chiro was able to work just on these muscles and corrected most of it...I had a deep impression at the base of my skull and it is no longer there....I was sent to shrinks, given meds....and told it would not kill me...ugh...I told them where it hurt and that I was in a MVA.....I was still in high school....
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1375148_tn?1323170521
So it's quite normal for a neurologist to dismiss finding on a MRI? i find that totally dis heartening for everyone.  I get a constant 'Ache' in my neck especially when im sitting at the computer or sitting upright for a while, i also have light sensitivity, i love the way my consultant says none of my symptoms would be as a result of the finding on my MRI you have to laugh dont you. are u all from US???  Anyone here in UK, Kent.
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620923_tn?1393294254
Yup many times referred to as incidental....read teh poem at the top of the forum by Dr Oro...it should explain all to well how most drs look at this...he is a chiari specialist...so by reading this it gives hope that there r drs out that that do understand this condition.

"selma"
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1375148_tn?1323170521
Yes i think that's what she said, incidental finding, nothing to worry about.

That Poem is good!! It's hard for me, cause i haven't actually got a diagnosis of CM
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620923_tn?1393294254
Well from the report it is pretty good indication u might...so push for answers : )

"selma"
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1375148_tn?1323170521
http://www.dailymail.co.uk/news/article-1293996/JLS-songwriters-wife-died-agonising-headaches-blamed-pregnancy.html


Sad story
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620923_tn?1393294254
Hi...yes, Sally Meehan is  just one that passed away from chiari related issues...unfortunately, her drs brushed her off too long, never did testing and assumed it was pregnancy related HA's....now her DH and 2 little children the youngest being 6 months old no longer have her in their lives.This is y I say PUSH for answers...u know ur body and what is not right....then get the drs that know this condition.

"selma"
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1375148_tn?1323170521
So what does it mean if the cerebella tonsils have herniated but they are normal in shape?????
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1285653_tn?1288362229
After no longer suffering some severe symptoms and flares, I was going to cancel my appt for the neurosurgon next week. Dr. Xiao Di is a chiari specialist. Luckily, this article made me change my mind.
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Avatar_m_tn
Hi and welcome :)

As you will see from the Sally Meehan story most Doctors have never heard of CM. Of those that have many are not up to speed with this condition as it is something they dont see in every day practice. This is why it is Important that you become your own advocate, understanding your illness is important and helps you to know when you are being fobbed off. As others have suggested you need to find a Neurosurgeon with CM experience and who deals with CM on a regular basis.....

Neurologists dont normally deal with CM as surgical intervention is usually recommended for people when treating the symptoms dose not work. Here in Europe surgery is a last choice as most NS will adopt a watch, wait & see approach. Surgery is not a cure, the purpose of surgery is to help improve quality of life and to prevent progression of the symptoms.

Ray    
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1375148_tn?1323170521
Yeah Ray, i am starting to see this, reading the posts dealing with my consultant, ive got an appointment on August the 4th. See what she says, but i have a few questions, perhaps you guys can tell me if there worth asking?>

1> My report says my cerebella tonsils heriate into the foramen magnum, however they seem normal shape ----  so does normal shape tonsils make it not so bad???

2> I have continued top of the back ache, to the point where i have to stretch alot cause it feels tight - could this be as a result?

3> I ALWAYS carry ear buds around cause it feels like i have a constant build up of wax, and my ears are itchy but no infection cause ive had them checked, could this be related in some way?

4> If my Consultant is not a CM specialist, and she won't refere me anywhere, should i go private??? cause like you have all said, don't give up! i don't see how i can give up with my report findings as they are.

[Mild scoliosis concave to right lumber / Disc protusion at c3-4 impinging of exciting left nerve and loss of phsiological cervical lordis /slight assymetry of temporal horns with the right being larger. as well as 2 recent A&E trips for extreme abdominal pain which has since shown in a ultrasound as both kidneys diolated with the left being larger and has stagnent urine in}}

Thanks so much every1, sorry for all the questions, just not sure what to do and have been left hanging with a MRI report with no answers.
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620923_tn?1393294254
Hi...the tonsils can take on diff shapes and be described as peg like, or rounded...either can cause a CSF blockage as it is wider at the top with the peg like shape and fuller at the bottom with the rounded one...regular shape for the tonsils is equal width from top to bottom...so one with a 2 cm herniation with a reg shape will have less CSF blockage than someone with a 3 mm herniation that is peg like....


Size and shape of the herniated tonsils is not the only thing the dr should be looking at...there is the odontoid process, bassilar invegnation (sp)....which can cause CSF blockage with a normal shaped tonsil....so more tests and a closer look is needed.
Hope this helps : )

I had a lot of issues with my ears...and sinus issues are related so I would imagine that is y we get the ear issues too.

If u can afford to go "private" or if u can get copies to send  to a chiari specialist here just for  a review that may help.....some charge a nominal fee.



"selma"
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1375148_tn?1323170521
Oh that's handy to know, i can't afford to go private i just know what our health system is like, and i wan't it sorted soon, can't keep having so much time off work / not going out / back ache etc, well you guys know, the actually symptoms begin to determine what you do and don't do ya know.

It says on my report

"Slight assymetry of temporal horns of the lateral ventricles with the right being bigger than the left, other wise the ventricles are normal in size, normal basel cisterns, normal vasular flow voids, cerebella tonsils herniate into foramen magnum, however they seem to be of normal shape, there is obliteration at the level of foramen magnum with obliteration of fliud space"

Flow voids?? they look normal right....
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620923_tn?1393294254
[there is obliteration at the level of foramen magnum with obliteration of fliud space" ]

This is what concerns me...not sure what they mean here....I would ask about this statement.

Oh yeah we all know too well how chiari dictates what and when we can do something.....the Health system here is a little better, but we all have the same frustrations with the medical professionals.

"selma"
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1375148_tn?1323170521
Oh ive written that wrong

It says

"fullness at the level of foramen magnum with obliteration of fluid spaces"

My brothers brother has had a tumour, he was shunted last year, but developed hydrocholous [sp] he had a speciaist referal made in march this year and is still waiting! disgusting huh

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620923_tn?1393294254
It still mentions obliteration of fluid spaces which can not be a good thing.

Was ur brother shunted for the hydrocephalus?

That is criminal to make someone wait that long.....I can not imagine. We do wait here too, but goodness u would hope they would jump fences to help someone....ugh
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1375148_tn?1323170521
He was shunted due to the tumour, the shunt kept blocking, and they tested it and found hyrdo. Its disgusting he had TIAs afterwards [mini strokes] and could potentially stroke at any point, its so sad, he's 25.  

So what do u think obliteration means?? the wait is the killer, my GP is doing me a fit note for work untill we know more, she says she doesn't want to risk it, i work with challenging autistic adults.
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620923_tn?1393294254
HI...I have heard of a chiarian having TIAS after surgery....but she felt it was the result of HRT.

Obliteration = annihilation: destruction by annihilating something ....nothing left.

I think it is wise to be careful at work....

Sending prayers for ur brother and u that u get the proper care u both need.

"selma"
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1375148_tn?1323170521
Thanks Selma your so knowledgable about all this, today is a not so good day laid up on the sofa, managed to get to work but by the time I got there the sharp pains all over and numbness was to much so came home to rest, what I just don't understand is surley if your a neurologist you should know of this condition??  That's crazy lol or at least not accept parts of the brain being in the wrong place
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Avatar_m_tn
I agree with selma, you need to be careful. You can request a second opinion I should imagine however you will need to see this doctor in August first. I would strongly advise that you get copy's of your medical records and all test you have done, you should get them under Freedom Of Information laws. If you need to travail for treatment you will need them.

Ray    
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1375148_tn?1323170521
So can I ask for my actual scans?
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Yes they will give you a CD copy of your scans.
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1122824_tn?1274110614
Hi there,
Question relating to your medical records.
You can get in contact with the medical health records dept of the hospital that did your scans and request all the records you want - even the scans. They will send you a form to complete which asks which records you are after. There is a cost, but it's not too much. I know this because I used to live in the midlands, but have since moved to Spain so had to request the info.
I have recently been diagnosed with Chiari type 1 with syringomyelia and am just going through the 'runaround' at the moment. I had my mri done in the uk shortly before I moved to Spain.
Hope u manage to get your records without too much trouble.
Take care.
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1375148_tn?1323170521
Thanks, i will let you know how it goes, i am due to see her on August the 4th, i will be sure to question what my report says and what i have done is look at the internet at cerebella tonsils herniations, so when she shows me i can point it out and question it etc.

Its just the waiting, today has been awfull pain, head pains, grrrr it's days like THIS when you want the app sooner rather than later huh.
x
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1375148_tn?1323170521
Is I common to have the size of the herniation on your MRI report??? Mine doesn't say a size.
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620923_tn?1393294254
Hi...many times it depends on the radiologist and what they were looking for to begin with and the education they have on chiari....these are their opinion so it matters what they have been taught regarding chiari...if taught that it is an incidental finding, they may be less likely to note the size....

The fact that the size does not really matter can be another reason for it not to appear....it is the CSF blockage and overcrowding that is more important along with the shape of the tonsils.

Hope that helps some : )
"selma"
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1375148_tn?1323170521
Ok I find that a little reasurring it says my tonsils are normal in shape so perhaps that's not so seriouse, so just gotta sort out this obliteration of space in foramen magnum. Lol
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620923_tn?1393294254
yup....and try to keep calm....stressing can make symptoms worse....and we don't need that ....on top of everything else : )

Keep us posted
"selma"
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1179332_tn?1297482590
Hello!

I've been away on holidays and have just been reading through all the posts :)

I just wanted to comment...

I am from Canada and in a lot of ways our health care in the UK and here seems to be  similar.

In my case, the Chiari was missed or ignored by the radiologist and my NL (who I believe decided not to tell me as he liked the stress dx better). I went for 6 months rapidly progressing w/o a clue of what was wrong with me and no one told me until I finally went to see a NS. So VERY important!!! Do not rely on a NL to give you an accurate view on Chiari....get a specialist!!

I was never given a mm either and I never thought to ask. My NS didn't even seem to be concerned with size, he was more worried about the fact that my foramen magnum was overcrowded and there was an area where little or no CSF was able to get through. Sounds EXACTLY what you are experiencing. So I just wanted to tell you to have confidence in yourself and keep pushing until you get a dr that understands and is willing to help you. If I hadn't kept pushing...I don't think I would be doing nearly well today as I am. My NS dx'd the Chiari and did the surgery within 3 months.

Take care and good luck
Carolyn
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Thanks for that mate, i will keep pushing trust me.

I just wondered, my neck 'clicks' when i move it sometimes, is that something i need to be making a note off in my symptom diary?
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620923_tn?1393294254
HI...some do get the clicking sound when they move / turn their heads....do add it to ur list of symptoms and things to discuss with ur dr.

"selma"
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1375148_tn?1323170521
I have had to book a private NS appointment, he is a specialist in Chiari so will be able to tell me if it defo is or not, or even better try to help me find out what's going on with me. Im kinda excited, its next Thursday at 4pm in Harley street, I could not wait any longer and after hearing that NL arnt clued up enough well, im pleased with my decision.  
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620923_tn?1393294254
Good luck with the NS visit !!

"selma"
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Hi Selma, I wanted to just say that I'm glad I came upon this forum..Please Selma, I know this post it a little long, but If you can take time to read this post, I would greatly appreciate it.  I think I may have Chiari Malformation symptoms. I'll list what happened and my symptoms..so here goes,  One day..I was sitting on my friends trunk on his car..he was already sitting in the car.and being a prankster, he turned on the engine and drove away at about..15-20 miles per hour..My body fell off the car and the back of my head was the first to greet the concrete.  I was laying on the floor and immeditley sat up and then I fainted for about 8 seconds. Head started to hurt for about 1-2 days.  About 1-2 years after my head trauma accident, everytime i turn my head left to right..I hear this fizzing/pop rock/sandpaper like noise in the same place I had my concussion. Also, the fizzing noise can be heard sometimes when I dont turn left to right, and it would last about 5-8 seconds. Overtime, I have also had headaches (not normal), but like a keen/ sharp headache in the very same spot.  I also get a numbness/(EX. sitting on ur leg too long) in my face,body, and hands somtimes.  This terrifys me as I dont evenn know what this can be.  I have had CT scans, MRI scans, and MRA scans for what I thought to be a brain anuerysm, but nothing showed up on the scans.. Now that I came upon this site..I'm afraid I share alot of same symptoms here. Do you think I have Chiari?

Thank you Selma
God Bless to all who suffered trauma.
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Hello Everybody =)
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