Optic Nerve Swelling in Chiari Malformation I?

[Vibrince]

Hi All,
I am brand new to this board and have not read many posts.  I have recently been diagnosed with Chiari Malformation I but am still in the "diagnostics period".  This diagnosis was a blessing to me as nobody caught it until just now after years and years of symptoms that have drained my life and spirit.  I am a 30 year old mother of two and it wasn't until I went off of my heavy pain meds (for mild spina bifida) that I began having these horrible migraine headaches and neck pain with vision loss and tingling in hands and feet.  After months of attacks that would sometimes leave me bed ridden for days I was sent for an MRI that clearly showed chiari malformation I.  

My question:  Does optic nerve swelling happen in Chiari patients??  I ask this because I was recently sent to my ophthalmologist from my neurologist.  She looked in my eyes and said "oh my God you are swollen sister...I can't believe your neurologist missed this".  Needless to say I was rushed for a nearly two hour MRI of the brain and orbits with a spinal tap coming up.  Nobody will TELL ME ANYTHING.  The results are not yet in to my doc from the recent MRI but the nerve swelling news scared me.  I lost vision via a blind spot in my right eye upon my first migraine attack.  With each headache, the vision got worse and I now have the same blind spot in both eyes.  I can no longer safely drive.  I know I'm jumping the gun I was just wondering if anybody had experienced this and if the nerve swelling is related to the recent Chiari diagnosis?  Thanks to all.  Much love!

Vib

[Spaceystac]

I went to the eye doctor and I have "large optic nerves" as the doctor put it. She said it could be something different about me and my eyes but they never did these tests when i had my eyes checked in the past.   I had to go back for additional tests for glaucoma and they didnt come back normal. She said it has to be retested in 3 to 4 months to see if I have more peripheral vision loss and retest pressures. I didnt test well on the field vision test and my nerves are enlarged.  I am going to go get my test results and info to see how bad it was because the doctor didnt tell me and I forgot to ask due to the shock of the whole thing. So I guess I have glaucoma? Without raised IOP.
So just some of my history, I have a tiny Syrinx, that is long (c2-3 ish to t-1ish) thought to be a dialated cantral canal. In my c-spine I have narrowing with bone spurs contacting the cord causing "mild cord deformity" at C-3-4 and C-5-6, annotations read 10.3mm at c-3-4 which is technically only .3mm away from being considered cervical spinal stenosis. Also reversal of cervical lordosis in the same area. No Chiari but looks like Chiari 0 to me, no csf behind my cerebellum and it is sittin on the skull even with foreman magnum in the laying position. I believe I need a positional MRI to rule it out (or in). If I have eye degeneration, would that be evidence of nerve damage from raised csf pressures?  And I am confused about papiledema and glaucoma? Im sure I just need to get my records so I know what she isnt telling me.  Im worried! My eyes have been bugging me terribly lately.

[tkilburn]

You might also want to look into a pseudotumor. I was diagnosed with a pseudotumor back in 1998 and had been doing fine on medicine up until about 8 months ago. Then the headaches came back but they are totally different. And now I have been diagnosed with a Chiari I. So I would look into both of them. I believe they are closely related but they don't know if they are linked to each other or not. I will say that the medicine they put me on for the Chiari they said will also work with my pseudotomer so that is always good to know. Good luck and stay on top of the vision because it can be reversable if you get it caught soon enough. Also be carefull getting a spinal tap. My NL told me to stay away from them at all cost now with the Chiari.

[Jennyfoo]

Yes, papiledema is an urgent issue, so please get to a neurosurgeon ASAP. I've had nothing but problems and delays with doctors and insurance, which is why it's taken me so long. The 1st dr I tried to see, and got a referral to, won't see patients in my med group. It would have been nice if the office would have told me that before I wasted a month getting a referral. Grrrrr!  The 2nd NS was backed up on referrals and had no business accepting my stat referral. After 3 weeks of her office saying she'd review my case that week, I got fed up and asked for a referral to UCSF. It was approved quickly, as I had enlisted a case mgr to help me by that time, but the dr is booking 2 months out, hence the Dec appt. I hope he will be able to help me. If not, I have no idea what I'll do; probably end up in a mental hospital because I'm already so sick and depressed about my nonexistent quality of life, i doubt I can take another dr saying there's nothing he can do to help me, or that my problems are not chiari-related.

[selmaS]

Hi and welcome to the chiari forum.

I know there is  a lot to take in and chiari is quite a bumpy journey....I am confused as I thought all SP patients had chiari that they never looked or told u b4 this.

As Jenny mentioned what may be an issue for u is papiledema....and it may be IIH or intercranial hypertension as a result of CSF build up.

Ask questions, but most of all ask if ur dr is one that treats nothing but chiari as that is what u want a true chiari specialist to help u figure out the best course of action.

And I would push to get in ASAP...do not let them drag this out, this is ur vision....

We do have a list of drs and I strongly suggest that u research all the drs to find the right one for u....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

We r happy to have u join us, but not happy for the reasons that brought u.

"selma"

[Spaceystac]

oops thought this was the neurology community!  lol

[Spaceystac]

Sorry to hear that they arnt telling you anything, I get frustrated with waiting and get my reports and interpret them myself because I feel like if they arnt going to tell me, I will figure it out myself somehow. It helps in the long run, you will find your self doing alot more research on your medical condition. That is good for you to know what is going on and not be left wondering.  
  Here on medhelp  there is a Chiari Malformation forum, you should join. It really helps to find others in your shoe's and you will find there are many people in that forum that are particularly pleasant.
    I dont (supposedly) have the malformation, but I have a small syrinx (which can be related) and spina bifida occulta, and  tarlov cyst (can be caused by increased csf pressures).   I started getting headaches with eye pain, blurry vision, and sometimes throbbing vision.  I havnt had any luck with my doctors telling me much, or getting me to the right specialists. I am getting my eyes looked at next due to this pain and vision disturbance. Not sure why I didnt do it sooner, I too have had people look at me an say my eyes looked like they were bulging while I had a headache.  
Hope you find the forum, let me know if you need any help navigating the site!      Stacey

[Jennyfoo]

Yes, the increased intracranial pressure from chiari can cause optic nerve swelling, known as papiledema. 1 week after my neurologist told me that my symptoms are not from chiari because my herniation is too small, and that he saw no signs of intracranial pressure, I had my yearly appt with my Opthamologist. She found papiledema in my right eye. She suggested that I have decompression surgery before the intracranial pressure causes permanent damage.  

My 1st appt with a neurosurgeon is scheduled for Dec 22, more than 4 months after the optic nerve swelling was discovered. Optic nerve swelling is supposed to be a borderline emergency. I have double vision almost all the time now, due to it. I have to close one eye to read, type, etc.

Google papiledema and you'll find good info.