Vision problems

[jenecaf]

I was diagnosed with an AN in October 2004. Between then and 2007, I have had 5 surgeries...3 for the actual AN, one for the hydrocephalus and one to revise the shunt that had to be put in. What I'm experiencing now is double vision. In the mornings when I wake up it is at its worst. I bought an eye patch to use so I can maneuver through my day. I moved last year to SC from NYC so I had to find a neurosurgeon down here. I was sent for a MRI and the neurosurgeon said that although the scan looked good, there was really nothing that could be done about the vision and it may be something that I have to deal with. Now, by the evening, the vision has corrected itself. And it doesn't happen everyday. This has been going on since May 11th. It's to the point where I go to bed later (around 3am) so when I get up at 7am, I don't have the double vision. I also notice it is heat related. Can anyone relate and give me an idea as to what's going on? I'm going to see my original neurosurgeon in NYC for a second opinion but any input would be apppreciated.

[Jim Scott]

Jenecaf:

I regret that as a non-physician, I cannot offer you a satisfactory answer to your query but I did wish to welcome you to the site and the forum.  You may wish to consult an ophthalmologist as well as the neurosurgeon. This is not something you should have to' live with.  I find that doctor's opinion almost offensive in it's lack of compassion for your quality of life.  If he can't figure this out, keep trying to find a doctor who can.  Double vision is a real impediment and while not uncommon with post-op AN surgery, it can often be alleviated and I hope and pray that yours will be.

Jim

[sgerrard]

I would just add that there is a specialist called a neuro-ophthalmologist, for vision problems related to nerves. You might find one affiliated with a larger university.

Steve

[jerseygirl]

Hi,

I also have  a shunt from my 1988 surgery but it's probably different than yours. I developed a condition after surgery called Normal Pressure Hydrocephalus where my MRI scan looked normal (no CSF buildup on the scan) but I had terrible headaches, vomiting and fluid build-up under the incision that would not go away. This shunt allowed me to start healing. During this ordeal I was explained that CSF build-up is worse after lying down after a few hours such as first thing in the morning after a full night of sleep. That is why headaches in the morning is an ominous sign as it can signify a brain tumor. Double vision in the morning all of a sudden CAN be a sign of hydrocephalus as well but only a specialist can decide whether it is indeed. My shunt was put in by Dr. Wisoff of NYU. He told me that all functioning shunts need periodic revisions and none function longer than 10 years. The fact that mine is 20 years old means that it no longer works and I don't need it. They can test the shunt in the office if I want to.

Here is my suggestion:

1) Sleep on elevation (many pillows, wedge pillows) or sitting up (Lazy Boy chair or any very comfortable chair). This  allows for an optimal flow of CSF  and prevents its build-up. Note if there are any changes in the frequency of double vision in the morning.

2) Seek out a specialist in shunts in your area. The shunts are most common in pediatric and elderly populations and are uncommon among adults unless they have been "blessed" with a big brain tumor. In my experience these specialists are listed under "pediatric neurosurgeons", so you might have to make a lot of phone calls before you find one. There are actually people whose bread and butter is shunts, not surgery. These specialists are well hidden but they do exist.

3) Seek out the advice of neuro-opthalmologist as Steve has suggested. All these options are not mutually exclusive. The more specilists you see, the more you will find out about the cause of your double vision.

4) Seek consultation of your original neurosurgeon even if it is only by phone or e-mail.

I would love to know where you had your original surgery, who did your shunt and how big was your tumor. I am assuming it was big, otherwise you would not need a shunt to begin with. Best of luck to you and let us know how you are doing.

                                Eve

[sabuck]

jenecaf,

I had double vision post operatively as well. Mine too required a patch so that I did not have to close one eye to experience seeing only one of everything. This did eventually all go away but I cringe even now remembering the mornings. That was the worst time for double vision. I assumed that it was from being in a prone position for so long causing swelling in the traumatized areas. I wish that I could tell you exactly how long before the morning DV went away but it should go away soon.  I am sure hoping that yours resolves itself soon too! Remain optomistic because it should get better. Hang in there!