Optic Nerves and Status of the Eyes

Photo to the right
Diagnosis:
Papilledema Secondary to Intracranial Tumor
Comment:
Bilateral,fellow eye: the signs of disc swelling are less pronounced. Moderate blurring of the disc margin is associated with moderate hyperemia, venous dilation, and coarsening of the peripapillary nerve fiber layer. This case demonstrates asymmetric papilledema.
Author(s):
Stephen C. Pollock, M.D., Durham, NC, USA

Above: View of optic disc and nerve of my right eye
Below: View of optic disc and nerve of my left eye

I cannot fully explain this to you yet as I am still researching it myself to understand what I am looking at. I have yet to find a photo of a normal eye. I am finding lots of photos of glaucoma patients as it is a disorder where intraocular pressure is increased damaging the optic nerves. That is why I take the same medication as glaucoma patients (Diamox to reduce intraocular pressure).

The papilledema (optic nerve swelling) is still a mystery of NF2 which another person in the country and a patient from Australia and I are investigating. So far, we have found out that the tumors are releasing proteins into the cerebral spinal fluid and increasing the intercranial pressure. Two other patients with this problem have had lumbar punctures to try to alleviate the papilledema. I have not. I have been on Diamox for two years to reduce this swelling. From what I have been told, the tumor which was removed could have been pressing on the 4th ventricle of the brainstem creating blockage of the cerebral spinal fluid and thus increasing the pressure. Now that the tumor which was the source of compression is removed, I am trying a trial off of the medication to see if the papilledema returns.

SIGH......... It is frustrating to not have answers and to have my eyesight hanging in the balance. Not cool seeing as my sight is CRUCIAL to my functioning. These complications with vision were totally not anticipated at all seeing as I do not have optic tumors. Hence, I never bothered to research it over all these years and my field of study is not in ophthalmalogy or even human anatomy on this scale.

As part of having NF2, research to understand my disorder and make treatment decisions have become a big priority of my life. Fortunately, I have the science background to grasp all of this and the study aptitude. I also have the experience of going through a serious medical situation at a young age (cancer at 21 while I was a college student) and realize the importance of keeping track and being responsible for my own health care.

I have been thinking over the past year of obtaining a detailed and thorough anatomy book of the brain. My current library has only basic biology books as my area of study was not human anatomy (instead zoology, marine biology, and geology). Also this evening, I was thinking it would be good to add a book about eyes to the collection. All this knowledge is important to my understanding of what is happening to me and what course of action to take. As the saying goes "Give a man a fish, he eats for a day. Teach a man to fish, he eats for life."

Status on the eyes so far-

Tuesday November 6th was my last ophthmalogy appointment. Apparently I was supposed to have it next week but the schedulers made it for last week intead of next week. The idea was to have a checkup after I have been off the medication 3 weeks. Instead it was 1 week off of the medication so really we do not have a clear picture if the papilledema is resolved. (I did not know this until we showed up.) The photos above were taken last week. The doctor said my optic nerves are stable but are showing scarring from the papilledema. Yet when the photographer took the photos he said it is showing optic nerve swelling. So who knows until I see a different ophthmalogist down in Portland next month.

It was still good I had the appointment as I was having extreme irritation in my right eye. It was like having an annoying hair or object in my eye or having pink eye. It was hard not to rub when it itched and burned and was blurry. It was really bothersome as it would all of a sudden flare up when I was driving. I could not close the eye for relief as I cannot keep the opposite eye open. Thus I had to blink super fast to keep from driving off the road blind and hope for the best that it would go away. Obviously that is a huge problem.

At the appointment I was told not to rub the eye. Well what the H do you do? Isn't it natural instinct to rub your eye if your vision is blurry and irritated like there is a particle in it? Do you just sit there and let the irritation eat at you and not be able to see? HELLO?

After insisting that it be checked out and pushing for a way to get relief as opposed to just "Don't rub the eye.", I got the answer that my eye is drying out and there is a slight dryness of the cornea that needs to heal. I am not blinking the eye consistenly with the other one and closing it fully due to the facial paralysis on the right. My current drops (Refresh artificial tears) were not enough lubrication for the eye. I needed something thicker in consistency but the gel drops which I use at night are too viscous that they distort my vision (like looking through water). When we saw the photo guy we got some samples of Refresh Celluvisc and Optive. I asked for a contact lens patch from the photo guy and finally the doctor provided the reason why not to rub my eye and why I could not have the patch. First, the contact lens patch can trap bacteria underneath the lens and prevent the epitheal cells from healing. Constant rubbing of the eye further aggravates cornea (such as scratching a cut).

The Optive drops have been very successful and I have not had the terrible irritation. I am not experiencing double vision or light flashes but I am having momentary blacking one would experience when having a head rush. This seems to happen when I wake up, when I stand from a sitting or resting position, and when bending over. I had an occurance today while walking when I stopped to tie my shoe. For seconds everything goes black like night and then it clears and I can see normally again.

Other issues to note:

Pain behind my left eye and involuntary facial spasms of the lower left eye lid (the side where I have the other tumor still)