Anyone having vision problems due to CSF leak?

[jimc]

I'm one of the persistent cranial leakers on this forum. I've recently been having trouble reading the newspaper, and at age 44, I just figured I finally needed reading glasses. I went to an optometrist, and my right eye was still 20/20 without correction, but vision in my left eye was very blurry. Worse, she couldn't correct it at all, no matter what she tried. I couldn't even read the really big letters on the eye chart with my left eye. The optometrist said I may have cornea damage.

I had Lasik a few years ago, and my concern is that the varying pressure I've had in my head the last 18 months has perhaps damaged my cornea where they cut the flap to do the Lasik. I have an appointment with an opthamologist, but in the mean time, I'm wondering if anyone else has noticed blurry vision on the side where they're leaking?

Jim

[GingerLox]

Dear Jim..................

Being 44 also, I too noticed the vision changes that come with age. But I DO have an additional vision problem in the morning. My vision is very blurry until I leak via the nose and then the pressure lets off. I actually leak tear-like fluid from my eyes when I lie down or I can squeeze it out in the mornings by rubbing my eyes. Once the fluid leaks out, my vision returns to "44 year old normal" for the day. I do not have any permanent type damage. I wonder if it is fluid buildup behind the eyes with you. Maybe it has something to do with the reservoir effect that they talk about? Good luck to you. I sure hope they can figure it out before long-term damage occurs.
Please let us know.
The bummer with that is, how will they be able to see the fluid in that space without a contrast? When they do our next cisternograms they should do an extra scan on our whole bodies to see where all the contrast is going........I feel like we will light up like Christmas trees!

fondly.
GingerLox

[horizontal handmaiden]

Absolutely: vision problems, blurred vision which presented right off the bat the first year and then steadily digressed to the point where in my fifth year, I could no longer read, even big print. Last fall I came under the care of an ophthalmologist who is familiar with the condition and impact of ICH. Testing indicated that the pressure in my eyes was six on a scale of 10 -- to this finding, he expressed extreme concern and his intent to maintain the damage at its present level, if possible, given the ongoing pressure on the optic nerve and surrounding structures. He said that I had "very significant" central vision loss, though my peripheral vision tested better than expected. Ordered eyewear, near and far, equivalent to the "needs of a 70-year-old" and in fact "might require a new prescription every six months;" prescribed Nevanac eye drops, daily; ordered followup evaluation every eight weeks. It has been six months and he is pleased that there has been no further digression, attributing this primarily to the medicated eye drops. The glasses help me to read, especially in the early morning hours, though I have noticed decreased vision again despite the corrective help; I also use magnification tools, where practicable. By the way, when attempting to read the eye chart each visit, it does appear that the vision in the left eye is worse than the right. The worst eyesight possibilities, he said, is more of the same -- macular degeneration, central vision loss, and the development of cataracts.

Of note, too, my last visit revealed that the manufacturer of Nevanac recently advised that SOME patients on this drug for two years or more have experienced a narrowing of their visual field. My physician indicated that the treatment can be prescribed in a cyclical fashion, and he intends to stop the drops in June for a period of time; he said that because of all of my presenting factors, he doesn't want to "even come close" to that two-year window, and by that time it will have been eight months.

So, for all of us, it appears we need to be vigilant about our vision as early as possible into this condition, given that the optic nerve is ensheathed in the CNS and that oh-so-fun drippy dura.

And I should say that I'm a fun 50!

h.h.

[guineapig]

oh my Jim, yes. eye problems a-plenty. hmmm, let's see... because of the intracranial hypotension: blurry vision all the time, but not too bad, it fluctuates, use glasses for reading, would for driving too, but don't drive, mostly. vision went real south when was on Topamax (which decreases csf production), which also sent my headache up a few notches as well and inflamed my eyes making them bulge, red, etc. (manufacturer states that 1% of consumers react with blurry vision. this was least of the side effects listed on Rx manufacturer's info. i am wondering if those 1% suffered ich for the taking of it). off the Topamax, then the "1000s % worse" vision reverted back to usual blurry vision in 48 hours.
i believe the blurriness is due to the optic nerve stretching, as horizontal handmaiden said/alluded to. as to the 48 hours of extreme blurriness, although the Topamax did aggravate the intracranial hypotension, this together with the ich at the time affected the optic nerve - making it impossible to recognize my wife's face from a few feet away.
occasional diplopia, both horizontal (saw a number of what appeared to be dual-fuelsalage (sp?) airplanes w/in 1 hour) and vertical (lane dividing stripes appeared as "v"s; the dashed lines became single (from the v) as the vehicle more closely approached each one).
eye pain -both- has been intermittent.
i had not thought of the eyes themselves actually being damaged due to the ich. hmmm, i do believe my ears are permanently hurt though, tinnitus and hypersensitivity to high-pitched noise (ig clanging pots). the ear pain has been intermittent as well as the popping noises (probably something to do with the eustachian tube and whatever process not being able to assess air pressure properly).

[jimc]

GL, h.h., and guineapig, thanks for your updates. Once again, it's always nice to know that you're not the only out there having a particular problem.

Interesting that guineapig mentioned hypersensitivity to high-pitched/loud noises. I've noticed that, too. A loud "clang" nearby seems to make my entire head ring, almost like a cartoon where Wiley Coyote gets klonked on the head with a frying pan.

Jim

[GingerLox]

...........Once I was trying to inconspicuously slip in to a small restaurant to borrow a much needed restroom. I placed my purse on the hook on the back of the door. While I wasn't looking, the purse fell to the floor. I thought someone shot a gun off near my head. You should have heard me scream.

And occasionally, out of complete silence, when my husband snores, I scream. He must think I'm nuts. When I overeact to sounds my kids say, GEE MOM!!!!!!!!!! It is very hard to explain.

I call it supersonic hearing. It sure makes one jumpy!

GingerLox

[jimc]

I saw the opthamologist today, and he thinks my eye trouble is unrelated to my CSF leak, which is good. He thinks my cornea is developing some scarring where they cut the flap for the Lasik, which is bad.

Jim

[guineapig]

Jim,
the ophthalmologist i saw for the extreme blurriness, on Topomax, also said it was unrelated to the ich/csf leak. so, i'm only the 1% reacting strictly to the medication then and the rest is unrelated coincidence? well, i suppose all the ear problems, ha, neuropathies, diplopia, etc are unrelated to the ich too. (i was on a low dose of 45mg Topomax a day when it happened.) your doctor may be right. but mine, i just add it to the list of doctor quotables:
"hypochondriac"
"mental"
"lying"
"somatic"
"you look fine"
"you don't have a csf leak"
"you need to do something about it"
"take two aleve"
"you'll be ok"
"you're just sensitized"
"unrelated"

or place it kindly in my very own catch-all pejorative: "ignorant, inexperienced, your-insurance-card-please charlatan", oh, i mean "doctor".

[Fillough]

I too am having blurry vision that makes reading almost any print difficult. I also have ghost images from further away on occasion. My doctors all say it has nothing to do with a CSF leak. Yet, my vision used to be better than perfect. Just as they said that fluid coming from my ears was impossible without a perforated eardrum. Still when my head is on the pillow, fluid comes out whichever ear is the one that is tilted down. Only members of this community seem to know these symptoms exist. So I appreciate your help and support. I am still wading through the insurance bureaucracy to get back to my ENT at USC. So far: Primary to Neurologist to Neurosurgeon(May 9) in order to get outside of network. 8 weeks and counting.

Thanks,

Fillough

[jimc]

Fillough and guineapig, I appreciate your feedback, especially the reminder not to let the doctor(s) write off the possible connection to the CSF leak. I saw the opthamologist again today, and he kept trying to tell me that the vision problem in my left eye was just normal aging. I had to ask three times why the right eye's vision could be made perfect with a couple of lenses, but the left eye's vision just won't respond to lenses at all. I finally got through to him, and he admitted that there may be something else going on. He's sending me to an opthamologist who specializes in retinal problems.

One interesting thing is that once in awhile, the vision in my left eye is really good. Most of the time, it's pretty blurry, but if it's due to normal aging, why would it vary like that? Of course, the pressure in the left side of my head varies a lot, too...

Jim

[guineapig]

yah, yah, me too! my vision fluctuates as well, although it is subtle, it does fluctuate. i am guessing that this as well as other fluctuating symptoms (facial pain or numbness, ear or eye pain) is indicative of active ich be the spinal leak healed or not. one eye has vision blurrier than the other but i believe this due to the eye(s) themselves and not the nerve which is being tweeked by the ich.
oh the joys!
keeping my eyes away from sharp sticks and over-experienced opthamologists,
guineapig


One interesting thing is that once in awhile, the vision in my left eye is really good. Most of the time, it's pretty blurry, but if it's due to normal aging, why would it vary like that? Of course, the pressure in the left side of my head varies a lot, too...Jim

[eman]

I had an epidural blood patch today, pushed a lot of pressure up into my head, vision in my left eye went blurry for about 10 minutes. It's funny because my CSF symptoms manifest as primary left sided. Too much pressure or too little really screws with things.

eman

[guineapig]

don't leave it like that eman! ebp on the heals of surgery! single or double patch? who did the patch? alaska? was the location of the ebp changed due to the previous surgery? blood patch after surgery, oh my, don't tell Wouter.
yah know i am beginning to think your handle should be "ermine" (close enough to a guinea pig) instead of eman.

[eman]

Yep, diff location than surgery, on one of the new Myelogram spots. I've gotta say, my ha become much worse after the Myelos, even before surgery. Big risk from the ebp after surgery you think?

[guineapig]

nothing (no risk) that comes to mind. maybe some added pressure around the epidural space of the surgery. how many ccs did the doc put in?

[squeakysmum]

jimc, my husband certainly has vision problems; though he describes it as "double vision", and not blurry per se, as others have described. And it doesn't vary, either, though it is worse in the morning.

His opthamolagist said the eyes themselves were perfectly healthy.

-Christina

[guineapig]

what your describing is a common although not ubiquitous symptom amongst ich suffers known as diplopia, or more commonly diagnosed as horizontal diplopia. i have not read the pathology explained in detail, so i am guessing that the optic nerve -or maybe just one in particular more than the other- is tweaked in an extra-special way (maybe should read that, extra-spatial) when one is particularly horizontal to lead to such differential. you can mimic it by applying some pressure to the top of one of your eyes (over your eyelid) and looking at just any distinguishable object. (go ahead, poke your eye but don't laugh whilst doing it, just at what i suggest. yahh, it is just that funny.) or put your finger about 6 or 10 inches in front of your face and focus on something in the distance behind it, you'll notice the double vision of your finger.

isn't it curious that your husband notices it more after being horizontal for so long. hmmmm, interesting, where does the csf settle in a horizontal brain.

guineapig, extra-spatial





jimc, my husband certainly has vision problems; though he describes it as "double vision", and not blurry per se, as others have described. And it doesn't vary, either, though it is worse in the morning.

His opthamolagist said the eyes themselves were perfectly healthy.

-Christina

[jimc]

I saw a retinal specialist today. He diagnosed the problem in my left eye as choroidal folds (http://dro.hs.columbia.edu/chorfolds.htm). He said these are caused by excess pressure near the optic nerve, and the cause of that excess pressure is often a tumor. He also agreed with me that, given the huge number of MRIs and CT scans I've had in the last 18 months, it seems very unlikely that there's an undiagnosed tumor there. He said the cause in my case is most likely my CSF leak. He said I should get a CT scan of the eyes and see a neurosurgeon for diagnosis of the cause of the pressure.

I'm scheduled to see a neurosurgeon at Hopkins next week who is a hydrocephalus specialist, so I'll bring this up with him.

Jim