Chiari?

[SG2]

Would anyone mind looking at the MRI pics I have posted and let me know your opinion on what you see?  I know you are not physicians.  I just want honest, first impressions from those who I consider experts (those who live and deal with chiari).  

I see NS on 19th. Have already seen NL who only admitted he can't help me and referred me to NS.. I'm 35 yrs old, female.

Thanks..
SG

[billyz123]

hahaha, you're funny. You got very lucky with this meeting you had with a doctor who had any clue about Chiari... or was that just the radiologist report? If you did find the doc helpful maybe you can add them to "the list"... not really sure how that works. I know what you mean though, this has almost completely taken over my life and I just want to feel better. I'm scheduling surgery soon and I think your next step is to do some research on Chiari specializing neurosurgeons and meet with one. It seems simple, like ok - the back of the skull just needs to be opened up a bit, but I can assure you, this is a specialty surgery. I've read too many stories of people getting surgery after surgery from the same NS that shouldn't have been operating on them in the first place. This is not how we should be treated!

Anyways I'm so happy for you for finding some answers :) and I wish you the best of luck<3 We are here for you whenever you have questions.

[SG2]

Haha, after NL told me what he thought of MRI, my initial response was, "I always knew I was too smart for my own good.  My brain is too big for my head!"

He had said the findings were a crowded cerebellum with slight herniation indicative of CM1. I didn't have a clue what any of that meant until I got home and hit up google like it was the hottest guy in the local bar.

I just want to feel better.  It's interfering with my life.  Literally.

BTW I didn't see my NS listed in the list of Drs here.

[billyz123]

hi SG,
Your symptoms definitely fit with Chiari Malformation. To me it looks like there is brain compression, especially in the second pic. It also looks like you have a small foramen magnum, which wouldn't even allow for herniation of the tonsils. Basically, follow Selma's advice :) This looks like a case of skull size vs. brain size or in the other words... The contents are too big for the container. good luck darlin <3

[selmaS]

  I would suggest u look at the list of Drs we have on here, the list is not meant as a referral, it is compiled by the members of their drs...ones they were happy with and had successful treatments/surgery with.
Not all may be true chiari specialists and in that I mean treat only chiari and chiari related conditions and do research on chiari. But, it is a place to start doing research of drs to find one that is right for u.

In looking at the list, do u see the drs name u r going to see?

Prepare a list of others u want to research and do so and have some ready for u to see after this one as u should always see a few NS's to compare what they r telling u.

And if a Dr tells u he can cure u...run far away....

   "selma"

[SG2]

Yeah, my thoughts are the same as yours. I see more crowding than I do herniation.  The NL is the one who gave me the diagnosis but said he doesn't not know enough of how to treat it and and need a NS who specializes in Chiari.  The NS I see on the 19th has experience with Chiari but I don't know if he is an expert, I guess I will find out.

Symptoms:
Headaches
  daily
  worse upon waking
  worse with any exertion
  so much pain/pressure at base of skull and behind eyes
  can't seem to find relief with any meds but admit I have rejected all  suggestions for narcotic relief.
dizziness
hearing loss, left side
tinnitus, bilateral
memory problems
speech difficulty (trouble verbalizing my words)
weakness of hands
numbness of hands
numbness of face
neck pain with extreme limited range of motion
I get these weird "chills" down my spine throughout day, almost like an electrical shock.  They don't hurt really but I feel like I have tourette's cuz it causes my whole body to jerk and I sometimes let out a little yelp..it's SO weird.

I'm also blind in my left eye, but have been for as long as I can remember.  No one has been able to tell me why.  I can see colors only, no defining shapes and is not correctable with glasses or surgery.

So...?  I don't know.

[selmaS]

  Hi and welcome to the Chiari  forum.

As u stated we r not Drs and not experts at reading MRI's either, but I will say this, if u r considered to have chiari it may be chiari 0 as the Drs look to the length of herniation...that is most NS's...a true chiari specialist will look to see if u have a CSF obstruction and overcrowding and look at symptoms and how ur chiari is affecting ur overall health.

Chiari is not how long the tonsils r herniated, but the malformation of the skull...that I can not even begin to recognize on a MRI, but it does look like u have some crowding of the tonsils and it does not look like it would meet the criteria of 5mm which again is what most NS's and NL's look for,...some look for them to be longer and this is a misconception as someone with a 13mm herniation can have no obstruction and no symptoms and a person with a 3mm herniation does.

  Make a list of all ur symptoms, even if u r not sure it may be related, as it could be....
Don't be discouraged if this dr says he also can not help....keep pushing by doing research and locating chiari specialists.
Know u r not alone : )

   "selma"