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Chiari Malformation Community
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Avatar universal

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.  
56 Responses
1063386 tn?1287882169
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.

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
620923 tn?1452919248
COMMUNITY LEADER
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"
Avatar universal
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.
620923 tn?1452919248
COMMUNITY LEADER
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"

999891 tn?1407279676
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
Avatar universal
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
620923 tn?1452919248
COMMUNITY LEADER
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"
Avatar universal
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.
620923 tn?1452919248
COMMUNITY LEADER
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"
Avatar universal
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?
620923 tn?1452919248
COMMUNITY LEADER
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"
Avatar universal
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


620923 tn?1452919248
COMMUNITY LEADER
yeah, I have seen this several times...was recently posted here...well written !!
Avatar universal
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
620923 tn?1452919248
COMMUNITY LEADER
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"
1375148 tn?1323170521
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
620923 tn?1452919248
COMMUNITY LEADER
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"


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
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.
620923 tn?1452919248
COMMUNITY LEADER
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"
620923 tn?1452919248
COMMUNITY LEADER
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....
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.
620923 tn?1452919248
COMMUNITY LEADER
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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