Vision issues--what do you experience?

[dkdean]

I've been having vision problems for the last 3 weeks (with an 'event' tossed in the middle--numbness, confusion, etc).  Just wondering....for those who are officially diagnosed with the CM--what type of visual disturbances do you experience?  Do you have them all the time?  For periods of time?  Intermittantly?  Trying to figure out if the visual piece is 'low-lying cerebellar tonsil' related.  Thanks, Kim

[HMOblows]

First I'd like to say thank you for posting your stories, this is a great way to help each other. I was diagnosed with a 5mm chiari I Malf. 10 years ago. That MRI was studied by a NEURO-radiologist and at that time I was on a PPO, so I chose to use Doctors out of the network.  I was in my 20's.  I had only headaches as symptoms and one instance of facial paralysis. Extreme, and over 20 symptoms began just after a head injury a few years ago. I am just beginning to get the vision symptoms now. Dizziness with lights flashing, etc and I go for a field vision test next week. My HMO Doctors are so confused and have been passing me around for 4 years. Sadly, I cannot switch to PPO and the HMO circuit is very controlled. They find anything to blame it on in an effort to avoid the bottom line, which is the chiari, because they know the cost of surgery is so much. They even went as far as having a new brain  mri done which was read by a regular radiologist, as opposed to a neuro radiologist, and it said that I had cerebellar ectopia and not a chiari I malf. So in a nutshell, they re wrote my history somehow. Is that just simply a lack of education in the field? At this point it's pretty obvious that our health care would rather risk litigation than pay for what's needed. We pray that we can sell some things to afford to switch to PPO so that we can get honest Doctors who will take care of me. Good luck to you all, I know how crippling this disorder is.

[selmaS]

  Hi and welcome to the Chiari forum.

It is possible that ur symptoms r chiari related, but there r many conditions with similar symptoms, so we all have to be tested to rule out ....other conditions r MS, lymes, lupus.....

The only way u r going to figure out if it is in fact Chiari or something else is go to the Dr and have the testing done.

  A brain MRI w/wo contrast and a cervical spine MRI is a good place to start...as well as some blood labs as low levels of vitamins and minerals is another thing that can affect how we feel and heal.

   "selma"

[bitsypixie]

Hi, I've had visual symptoms similar to many of yours for close to a year now, at least that's when I noticed them. I have afterimages, ghosting/double vision, floaters, sparkles (especially when I look at the sky or light background), snowy vision, and sometimes foggy/smoky vision. Also, stationary objects appear to be moving slightly, kind of like they're tilting? These symptoms seemingly appeared out of nowhere, and one at a time. The first one I noticed was the ghosting/double vision which can be made worse if I squint my eyes.

I do have headaches, but they don't last. They're more like random sharp pains in my head. I also have pain at the area of my neck just behind my right ear sometimes when I laugh or sneeze or strain in any way. I have pressure in my head, or my head and ears just feel "full", and I have terrible ringing in my ears as well. I haven't been to a doctor yet, and have no idea if this could be CM, but so far it's the only thing that sounds similar to what I'm experiencing besides HPPD for the visual symptoms, but I've never done drugs.

The pain I have is not severe, in fact it doesn't really bother me. What bothers me is the visual symptoms. I've been too scared to see a doctor in fear he would think I was crazy. Does it sound like CM?

[irislita]

:)) same here....i see smoke everywhere...till the point i get crazy i swear.

[Rylanesmom]

My favorite vision problem is when it looks foggy indoors...at least then I know that it is only me.  On Christmas I kept insisting my husband was burning something because the house was smokey .... Only I could see the smoke lol.

[bookworm79]

Does she have Chiari?  Has she had surgery?