Ok......So How Big is yours? (giggle)

[danicafontaine]

Im trying to get a handle on the cerebellar tonsil thing.  If youd like a good laugh here's my first reaction:

"Ok, so take my tonsils out...." lol.  I have since been educating myself, and would like to get a feel for how outrageous or how insignificant my issue will be perceived when I finally do manage to get an appointment with Neurology....

My cerebellar tonsils are 9mm below the craniocervical junction.  How big are yours?

[selmaS]

Hi and welcome....as u will find reading on chiari size of the herniation is not  a factor...if the tonsils r peg shaped and causing a CSF blockage and overcrowding....is more the issue.

Have u had a CINE MRI?

Also, the practice of removing these tonsils has all but stopped...many NS's will cauterize the tonsils so they shrink, and they make more room by chipping away some bone.

There r many drs out there that have old info on chiari and may dismiss chiari...so u will have to keep pushing for answers.

"selma"

[thieb9]

it's not the size that counts....... Haha I couldnt help myself.
Mine are 11mm

[danicafontaine]

My MRI says moderate to severe cranial crowding.  But it was not done with contrast.  For some strange reason, because I am anaphylactic with fresh tomatoes, they refused to administer contrast, even though I have never had any reaction to contrast.  What is "CINE" ? and would contrast help them determine their "unable to determine impingement" issue?

[selmaS]

A CINE MRI is a flow study ...it is done to see if u have a CSF blockage.
This is usually done w/wo contrast as well.

Some contrast materials have caused some major medical issues......so , it is a good thing ur drs r being careful.

The CINE may help determine the impingement problem.

"selma"

[LisaM46]

Haha!  When I was told of my dx, and he spoke of tonsils, I also asked if they couldn't just take them out?  Dr. peers at me over his specs... "You can't take them out - they're part of your brain..."  I told him "Tonsils in your brain?  I never heard of such a thing!"  He says - "You never asked, did you?"  We had a giggle, and I'm sure he couldn't wait to share with his peers later ; )

Mine were first measured at 11mm, and my full mri workup at UCLA they were measured at 9mm.  My NS told me it can be as simple as the angle of my head in the mri machine that accounts for the difference (to make sure I didn't think it was getting "better")

Lisa

[n40066]

9.6  .....  or 9.3   bad night toningt and i can't remember which is correct.  but it's true....it's not the size, but if there is motion in the ocean that counts when you're talking about the chiarian sea!!!  : )

[Givenstrength]

Mine measured 16mm first time then 18mm second time

[LisaM46]

My, that's a big one!

[taylapj]

Mine was measured at 3mm in febuary, the medical proffessionals I have seen will not even accept I have chiari at all.... Even tho I've actually been diagnosed with many things that can be chiari related.  Lol

[dkdean]

6mm...then 6 or 7 depending on how you measure...currently 8-9mm--but again--it's all in how they measure...and most good chiari NS's will go on symptoms and flow.  But, it still does surprise me that something so 'tiny' can cause such huge problems!!!!!!!

[Alicia696]

Hi, mine measured 5mm. With the way I feel you'd think it was worse. But they say size4 doesnt matter it's the symptoms you feel.

Alicia

[burdzmom]

mine was 10 nearly 11 at surgery date.
six months prior they were at 5mm......i guess the aggresssive dropping is what made me so sick so fast.

[denverluv]

Givenstrength- HEY!!!!! Weren't you the one saying you were having the whooshing? Be careful! Mine was at 15mm - you are more - - please be careful with yourself!

burdzmom - me - too- I was actually dx when I was 9 - no symptoms- then I started having symptoms, first time they measured at 11mm, then 6mos later at 15- and I got sick fast too and the whole time before I knew it was dropping I just thought I was making my symptoms up in my head - thinking - i am just having symptoms because i know what I have now - but no, I was getting sicker and blowing myself off! LOL LOL LOL

[Givenstrength]

Denverluv... I don't think I've ever mentioned any whooshing before but what about it? Watch out for what?

Reason I'm asking... Is bc almost every single night when I lay down I hear a whooshing sound in my ears, almost sounds like it goes along with my heartbeat? I also have it after exercising (which I have nit exercised in a long time) and then I have even had it happen during day out of the blue!

I have actually worried bout this problem before... What is it, why does it do it?

[AJ29349]

Mine are at 8mm.  No surgery yet, but plenty of symptoms.  Going to Maryland this month!

[n40066]

you're going to come to maryland????  you'll be in my back yard!  we should get together for lunch or dinner or something!  if you'd like, i'll message you my #!
elizabeth

[danicafontaine]

I hear the rushing sound in my ears when I strain, and When i lie down.  Of course, I lie down and both arms go to sleep.  yesterday i had a dizzy spell unlike anything i have ever had before where I blacked out and fell down a flight of stairs and screwed up both ankles. A little while later, I had my first dose of what I would consider genuine tinnitis- but only in one ear.  High pitched ringing- lasted about 45 seconds.  Then, my face went numb and I limped my but to the cabinet for the aspirin for the migraine that popped in to remind me of just how miserable I was now, and wasnt before I fell.  Sigh.  still waiting to find a doctor that will accept my insurance and see me.

[jptdad]

18 mm at surgery.

[*Stormy*]

I wasn't even given a measurement really...just told that I "met the criteria" which to me says it must have been over 5mm. Never really thought to ask as I found this forum long after my surgery. What my NS was more concerned with was the overcrowding at the back of my skull (right near the foramen) that is where he said there was little or no CSF flow.

Givenstrength..I would get the whoosing sound you describe after exercising long before I knew I had Chiari. I also get it when I lie down if I am having a high pressure day (I can tell by the ear fullness, louder ringing and pressure HA). When I get the whoosing I can actually feel my arteries thumping hard in my neck like they are having trouble getting the blood flow through. When the pressure is high in your head I think it puts pressure on the arteries making them pump hard which is probably what we are hearing. I find the throbbing of my head pulses with my heartbeat.

Carolyn

[danicafontaine]

OMG! You took the words right out of my mouth! All of that started almost over a year ago! And sometimes when the arteries thump, it hurts.  

This forum thread has been really helpful.  Next, Id like to know what meds everyone takes that actually  help the headaches. Any suggestions? Im tired of butalbital and lortab and flexeril and phenerghan. Any body tried gabapentin? I read somewhere it really helps?

[selmaS]

Hi...I took gabapentin...and it did not help....I am starting topamax tonight...I will let u know how it goes...nothing I took in the past helped...I am post op, but still have related issues to deal with and have been dealing with a lot of pain  again lately...so I hope it helps : )

"selma"

[Givenstrength]

Thanks Carolyn! Must admit sometimes this stuff is pretty scary

[killypumpkin]

Mine is 5.5-6.0 depending on who reads it..lol.

My crowding is in the back of my head, not by my actual brainstem.  If you look at my MRI pictures I have kind of a "misfit chiari".  Round not peg shaped but still gives all the same lovely side effects.

I've said it all over the place on here but I sleep sitting up.  Lying down is NOT my friend.

[burdzmom]

HEY!

thats a funny start to many many comments to follow im sure ;)

Mine WERE 11mm and falling. They were sitting on my brain stem and spinal cord.
Im 9 months post op on the 11th and am headed to Johns Hopkins to see specialist there since im still having alot of issues. (my chairi inexperienced doctors in NJ are all about what the tests and pictures are showing)
My brain stem is now bent at about a 30 degree angle as a result.....i know i know....that explains the lack of judgement in many of my brutally honest posts and comments....just blame it on  the brain injury. LOL....