ok...now i'm frustrated..and confused!

[alexiwildchild]

hey everyone! hope your week is going well!

ok...i think i last posted that i was having a new MRI done, since my last one was a year ago--and i just now kinda found out about the whole chiari deal.  so here's where it gets weird...the radiologist that did this one was at a different place than my 08 one that states i have the 6.34 mm herniation.  so my neurologist calls me and i set up a followup to discuss the new MRI results.  just got back from it a bit ago.  

apparently there is a discrepancy of where to measure the tonsils or cerebellum.  the 08 is measuring from the forum magnum to the end of the skull bone.  the NEW one is measuring from the forum magnum to the SOFT TISSUE beyond the end of the skull bone.  with this measurement--there is apparently no herniation.  IS THERE NO GUIDELINE TO WHICH YOU ARE SUPPOSED TO MEASURE TO DETERMINE A CHIARI???  my doc wasn't even sure, cuz the last visit, he went by the end of the skull bone and said i did have a chiari....now with this new radioligists measurements, he's saying no.   WTH is this!?!??!?!

then he said the radiologist thinks i should be checked for hydrocephalus because of my symptoms, and the doc said that would require a lumbar puncture.  i don't know what to do cuz i know that's bad for people with chiari...if i even have it now!!!!

anyone know the rules for the measurements of this stuff----i am so confused now and super frustrated!!! anyone been told this or know what the guys at TCI or dr.oro measure by??!?!

please help!! :)

[tbissell]

Well I waunder if the same thing is up with my mri report. Please if you find out how to correctly measure it tell me!! Gee... docs are something else these days, it seems like they can only diagnose the basics flu, heartattack, etc. I do know or think that is, after the radiologist reads the report the doctor has to look over and diagnose, it can not go by what just the radiologist says. That is why when you go to a new doc they always ask to view the mri report even though it essentially says normal. So you just may have a stupid radi and neuro on hand. As far as the ventricals the last neuro did a specific mri of the blood vessels in my neck leading up to the brain which ventricals is the main one to check for any kind of blockage, deformities, and things of that nature. Because those kind of things could cause the symptoms I have. I did look online about small ventricals and all I could find was that in some people it is normal just like some have larger than the normal genetics I guess. So when is your next doctor appt? Please keep me updated. Tiffany

[alexiwildchild]

thank you all so very much for your help!!! i just got home, and i will look at the links ya'll posted---i am so interested to see what they say.  i was doing some looking, and it seems that the line is drawn at the very end of the skull bone, or the beginning of the foramen magnum orifice...but i will check the other links to see what ya'll came up with :D

i happened to read the report of this new MRI before the doc came in, and it said also that i had small ventricles, so idk what that means either.

thanks again, and i will harass ya'll more if i still don't get it lol.  i just don't know where this "soft tissue" measuring is coming from lol..ugh!!

[flcrakar]

found a better link.....has a mri pic.

http://www.conquerchiari.org/subs%20only/volume%203/Issue%203(9)/Small%20PFV%203(9).asp

[selmaS]

I PMmed a link to u for a diagram....which for a non expert it may help.
And as flcraker  mentioned....chiari can have effects without a herniation bcua of overcrowding.....they have to look how it is all positioned...not just what is hanging out!!

My herniation was not large and many drs dismissed it bcuz it was not considered chiari....my right side was 4 mm and the left 6 mm...but it was the area inside that was causing me issues.

"selma"

[flcrakar]

Maybe you should get a copy of Dr. Milhort's study and how Chiari is measured and send it to your neuro & that radiologist who doesn't have a clue what he is really looking for!  The link below is a study done and shows/tells how they measured the chiari. It is not just about how far the herniation is out, but the area in which that part of your brain is housed.

http://www.asap.org/articles/4year-Study.html

Good luck!

[selmaS]

Actually there is a line that is drawn on the MRI that is the point from which it is considered to be herniated.....I will look to see if I can locate the drawing that shows this.
I did not remember this yesterday.....see I still have my chiari brain fog....lol.....

But I did remember....lol....I'll let u know where u can find it.

"selma"

[chadry]

I have no idea where they measure from. My daughter had 2 MRI's done and they both said the same thing. It really does stink that because you had 2 done at different places and they read them different then you have to fight to get some answers. I had that problem when I hurt myself at work. I hurt my back and neck and I also had 2 different ones done at different places and had 2 different results. Of course they took the one that said what they wanted to read. The best part of this is that when I went to court that judge sent me to a doctor he wanted me to see because he felt he could get a reliable answer from him. He told me that neither one of them read the MRI's right and that I had another disc in my low back that was also messed up. He was the first to tell me about spinal fusions that he was not even recommending because it was too extensive and I would not get enough relief from the amount of surgery that would be required. I was floored to say the least.
I am just telling you this because I have been to so many different places and seen a lot of different people and no one says the same thing. It is every very frustrating.
You would think it would be not be that difficult to measure this. If Chiari is a herniation of the brain because the space is too small then you would think that it would be measured from where it leaves the skull and hangs low. Where is the brain supposed to stop? Shouldn't they all measure from where the brain is supposed to be positioned.
It sounds like you really need to send your MRI's to a place that can be trusted to give you an accurate answer at least.This last visit has left you really hanging in the air now. I can really feel for you and your frustration about it.
I wish you the best of luck on your quest to take care of yourself.
Best wishes,
Chadry

[alexiwildchild]

well i'm glad you're doing well, hope the changes aren't anything that are too annoying or bad for you.  i'm sure you'll keep improving.

well, haven't been checked for tethered cord or anything else yet...i don't think this doc is as knowledgeable as he lead on. :( which *****, cuz he's nice enough and can accept that my symptoms can be related to chiari. but other than that, he's a bust--and it all seems cuz of what one radiologist says..i don't get that.

from what i've read, the foramen magnum is the opening at the very base of the skull....which if i understand correctly, that is where the measurement comes from, NOT the soft tissue past the end of the skull.  does that sound correct to you?

thanks for listening :)

[selmaS]

Hi...yes the CINE MRI is for the CSF flow study.....did u also get checked for tethered cord?
There r so many related conditions...it is best to get to a chiari dr...TCI will let u know as will many of the chiari drs whether or not u have chiari.

I understand what u r saying...ur dr has no idea from which point the herniation is measured from......and u r right ...he must not be a chiari dr if he has no idea on which way is the correct way to get the size.....

The medical profession is fun ,huh??....and becuz they r so inept, we r learning more about this than most of the drs we see.....

I am doing pretty good....still having some changes going on...noticing some stuff I didn't while I was still on the strong meds....so, but I am doing good, thanks for asking : )

"selma"

[alexiwildchild]

hey selma! hope you are still doing well.

the pics he showed me were from the same angle...and said it hasn't grown or anything. but i guess he's saying one radioligist says no chiari, while the other is saying yes.  but he was showing me how to measure it from the same angle on each MRI.  i guess that makes sense?  but basically one is measuring from one spot of the end of the skull, and one is measuring from the end of the soft tissue...ugh!! i don't get it!

well, my doctor is obviously not a chiari specialist if he cannot give me a definite answer as far as where they measure the herniation from....geez!! i guess i will have to send my cd's to TCI or send them an email. cuz this guy couldn't give me an answer now.  and i haven't had the CSF flow checked yet, i guess he didn't see it was necessary at the first visit, and jsut scheduled the MRI.  is it the CINE that studies that?

hope i made some sense lol, thanks for your help!

[selmaS]

Hi...I understand ur frustration.....the chiari malformation is the skull being too small...with tonsils that are herniated are bcuz of the chiari....

neway, it also depends on which way the slice was of the MRI of the size herniation u will get.

I read this explination.....cut a hole in a piece of paper and look at an upside down pear....if the hole is too far left or too far right the amount in the hole isn't as big as it is if the hole is centered.....I hope I am making sense.


So, it all depends on how the slices for the MRI were taken the herniation can appear to be changing in size.

Is ur dr a chiari dr?.....also, have they checked ur CSF flow?...sorry I can not remember.

"selma"

[alexiwildchild]

i think i may have worded the forum magnum parts wrong...ooopsss. but i hope you got the idea ;)