vision problems with chiari

[Colleen3726]

hello, I was just diagnosed last Friday with Chiari 1, and it was a bit frightening at first but this site and reading your stories has really helped.  I understand we all have different symptoms.  Mine started several years ago, migraine headaches with a headache in the back of my head like Ive been hit with a bat.  Vertigo and balance issues, as well as loss of peripheral vision and lights flashing in my vision.  Some days I ache all over and feel almost like my head is getting ready to explode from pressure but even with all the pain I suffer the vision is what bothers me most.  I can not drive any longer between loss of peripheral and all the lights flashing Im just not safe on the road. Just curious if anyone else has anything similiar.  I was diagnosed with retinitis pigmentosa 2 years ago and that disease does cause loss of peripheral and loss of night vision. However, every doctor who looks at my eyes says its strange that I have so much vision loss and the evidence of the retinitis pigmentosa is not that much.  Thanks for listening..
Colleen3726

[selmaS]

  Hi and welcome to the Chiari forum.

In reading your profile it does not mention Chiari...so I am wondering if your husband has a Chiari DX as well as his vision issues?

[sandy629]

  my eye doctor told me that my eyes and pressure were fine that all the vision problems i was having was nuerological

[selmaS]

  Not sure what u mean by RP?

It is not uncommon for visual issues to be chiari....and since MRI's were not always a tool used to dx issues for the general public it has not been a long time that they have been finding them and many have no idea how they affect us....

I would suggest trying a chiari specialist for  ne one with a Chiari dx and all the tests to rule out all the related conditions as well.

  ANd some chiarians have had hearing loss as well.....

[jme139]

My mother and 3 of her siblings (not all) have been diagnosed with RP and each of the also have progressive hearing loss. Due to a recent dx of breast cancer she underwent an MRI that revealed cerebral tonsil herniation of 4.5 mm. The radiologist labeled the finding as mild Chirari Malformation I. Now I am wondering if this is what has caused her vision problems the past 40 + years. I always thought that it was odd that she and her siblings had RP + progressive ( and profound hearing loss). Thought it was some type of genetic syndrome but now I am wondering if they all have Chiari malformation I and that may be the cause of the blindness. My mother has always said that her movements affected her vision which I always thought was odd too but I have read somewhere that activity can affect your vision with CMI. Any thoughts?

[Malso24]

My husband just had first consultation today..although he is under investigation for Retinis pigmentosa nothing has been put on paper..waiting now on referral for muscle biopsy to see if there is links and then nurologist for possible surgery

[sandy629]

  i went from perfect vision to 3.50 glasses   when i have my head down to long or i over due it my vision gets blury and i get a headache.

[geebug]

I have yet to be diagnosed, but I have a lot of vision issues too.  I've always been very nearsighted.  Several years ago I started seeing floaters, and my eye doc was concerned about my retinas.  Apparently they are scarred, and they blamed the floaters on that.  I also have poor peripheral vision and night vision.  A specialist noticed that my pupils don't react properly to light.  They constrict much more slowly than they should, which he found baffling, but apparently not terribly worrisome.  Now I'm wondering if Chiari might explain all of my vision issues.  

[irislita]

Please go to an eye exam to check if ur pressure behind the eyes is alright.as intercranial hypertension icp needs treatment.just to make sure.

[Colleen3726]

yes the floaters...and so many and large ones.  very distracting, it made it very scary to drive.  thank you for responding

[Colleen3726]

thank you, yes the depth perception is a big issue for me also.  and the floaters..  My original neurologist told me he didn't think any of those symptoms were from the chiari but I am going to write them all down to take with me to see the neurosurgeon.  thank you!

[irislita]

The vision stuff is really bad.i am still not sure what is causing my blurry vision with floaters and funky stuff...either still chiari or my vertebras.i cant stand light neither a certain point of darkness.