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

[T73]

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.  

[jerrydub]

Hello Everybody =)

[jerrydub]

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.

[selmaS]

Good luck with the NS visit !!

"selma"

[taylapj]

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.  

[selmaS]

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"

[taylapj]

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?

[*Stormy*]

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

[selmaS]

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"

[taylapj]

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

[selmaS]

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"

[taylapj]

Is I common to have the size of the herniation on your MRI report??? Mine doesn't say a size.

[taylapj]

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

[LisaRiu]

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.

[rod44]

Yes they will give you a CD copy of your scans.

[taylapj]

So can I ask for my actual scans?

[rod44]

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    

[taylapj]

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

[selmaS]

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"

[taylapj]

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.

[selmaS]

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

[taylapj]

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

[selmaS]

[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"

[taylapj]

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....

[selmaS]

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"