ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: howardwick on May 31, 2008, 08:04:11 pm
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I'm new here, and I hope I'm not out of place, because it is my husband who has the AN, but I am very concerned about him. He was diagnosed 5 years ago, at the age of 64. His AN is 9 mm. We talked with several doctors of different specialties, but they all recommended "watch and wait" because of his age and the small size of the tumor. Husband is completely deaf in left ear. He also has tinnunitis in that ear, and vertigo. He copes with all of these symptoms very well, and other than the AN is in excellent health. He has regular MRI's and the tumor has not grown since it was diagnosed. I have noticed some slight confusion and memory loss once in a while, but not much. The problem that concerns me the most is that he is losing sight in his left eye. He has been to four eye doctors of various specialties, and none of them think it is associated with the AN, but the retina specialist did say that the problem with his eye was an enlarged blood vessel on his retina. Does anyone else have this symptom? Could it be a hemangioma? Has anyone received treatment that helped with these types of problems? Husband has coped so well these last 5 years! He is a hero, but this eyesight problem is beginning to get him down. Thank you for giving me a place to bring my concerns.
Howardwick
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Hi and welcome! You don't have to be an AN patient to join the discussion. Feel free to post any time with any issue or concern you have :)
I'm sorry to hear of your husband's AN and wish I could shed some light on his eyesight problem. Most people with ANs experience problems with their hearing, facial nerves, and/or balance. I had hearing and balance problems, but my eyesight was fine.
You say your husband has been to 4 eye doctors of various specialities, but has he been back to the doctor who diagnosed his AN? I'm assuming he was diagnosed by a neurotologist or an ENT. Have you thought about contacting either of them about his eyesight problems? Perhaps they could tell you and your husband whether his eyesight is being affected by his AN or not.
Just a thought,
Jan
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I had an experience with a detaching vitreous. A blood vessel broke and I developed a large floater in my right eye several years before my AN diagnosis. The floater was annoying but did not develop into a threat to me. My Opthamologist required two follow up exams to make sure the retina stayed healthy while the floater resolved. He never referred me for an MRI or an alternative diagnosis.
When I revealed four years later that I'd been treated with surgery for an acoustic neuroma, he sat mute. This is a young doctor and I would have thought he'd been trained in brain tumor alerts, but I never got a hint that he'd missed an opportunity. To day at 2½ years post Translab my AN side eye is weaker than the good side, but still healthy as vision goes. I am 66 this year. Sometimes we discover other quirks in our bodies in much the same way that the AN reveals iself, by accident leaving us and the doctor we trust scratching our heads.
I think an Opthamologist would need to be working in a practice that dealt with an ENT to be acquainted with brain tumors. I have no idea what the specialty would be. Someone on this forum might know more.
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Hi. After reading this thread and what Bobbie said, I think that my mouth fell open. I am 53 and had my 2.5 cm AN removed in October of '08. A few years earlier I had been to my opthamologist for an examine due to an opthalmic migraine and "floaters" in the AN eye side. He had given me some explanation about the vitreous material of the eye. I am wondering now if the AN could have contributed to the floaters. Wow! :o
My humble advice for your you and hubby: Since your husband's AN is so small and has not grown, and, unless someone can prove the AN is causing vision problems, just monitor it. It's been 8 months for me post-op and I still feel a little rugged in the mornings.
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Hi Howardwick,
Welcome to the forum. If you are married to an AN, that is good enough for me. :)
My own eye story: about a year before my AN diagnosis, a routine eye exam showed high eye pressure. After visits to an ophthalmologist, I have been using eye drops ever since, to bring the eye pressure back down, since high eye pressure can lead to glaucoma.
Are any of these eye things related to an AN? Maybe. My guess is that it is more likely something in the body changes, which causes or triggers both the AN and the eye problem. So rather than one causing the other, they both may share some common underlying cause - age, hormones, blood sugar, something like that.
More importantly, I don't think any doctor would recommend treating an AN specifically to address these kind of an eye issues. There are vision problems, such as double vision or eye movement, that can be caused by balance nerve damage. There are also eyelid issues that can result from AN surgery. But other than that, there isn't any link of ANs to physical changes in the eye that is strong enough to justify treating the AN for that reason. (At least not according to Google). Neither my ENT or ophthalmologist saw any connection in my case.
I hope the retina specialist is able to find a treatment that will help your husband's eye. As for the AN, I think continuing the watch and wait makes sense.
Best wishes,
Steve
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I've also not heard of any relationship between ANs and floaters/vision loss. But to be on the safe side, I would recommend you talk with the "reading radiologist" (the one who read your husband's MRI) or the doctor who will treat your husband if and when treatment is needed. Ask them specifically if, in the MRI, the tumor appears to be impinging at all on the optic nerve or any other nerves (or parts of the brain, if the AN has grown into the area outside of the internal auditory canal, deeper into the cranium) related to eyesight, whether directly or indirectly. An example of indirect involvement would be, for example, the facial nerve being impacted such that the eyelid has trouble closing, causing dryness of the eye which, if left uncorrected, could degrade eyesight.
Okay, you would already be aware of any problems your husband is having with his eyelid. And I'm probably showing my ignorance by even mentioning the optic nerve; I've never heard of an AN affecting the optic nerve and for all I know it may be nowhere near where ANs grow (although some ANs originate in or balloon out into the cerebello-pontine angle and impinge on distant nerves' root entry zones; i.e., the point where they enter the brain stem). But, despite my extremely limited knowledge of anatomy, my point is that the MRI should show what cranial nerves are being impinged upon by the tumor. The doctors who diagnosed your husband's AN should be able to look at the films and see what's being impacted by the tumor and tell you if those structures are related in any way to eyesight.
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Steve,
You mentioned double vision as a symptom. I had pretty severe double vision for a few days post-op that finally tapered off to just mornings and then thankfully no double vision. Do you think it was caused by jostling the brain during my suboccipital procedure or from something else? Thanks -Steve too
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Steve too -
double vision is a fairly common symptom post op. I had it myself for 2 or 3 days - very disturbing. I had to look at things with one eye closed to feel "normal".
I don't know why it occurs other than the docs are poking around in your brain :D I'm sure there is some scientific explanation though.
Jan
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When I was doing searches yesterday on ANs and eyes, I came across a discussion in the CK forum, where Dr. Medbery said some things about the eye. One was that the optic nerve itself is too far away to be affected by an AN, unless the AN is really huge. The other was about the role the balance nerve plays in coordinating eye movement. For instance, my vestibular lab tests showed that I have a small amount of nystagmus, or eye flickering, when I lie on my right side.
In order to keep your vision smooth, the brain has to do some fancy coordinating of eye movement relative to body movement - a "steady cam" feature, if you like. It depends on the balance nerve to get this right, so when the balance nerve on one side is disturbed or disconnected, it can take a while to readjust to using only the good balance nerve. I think that is the reason for temporary double-vision post surgery. It's actually pretty amazing that the brain can adjust to the change so quickly.
Steve one :)
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Steve #1 -
thanks for the medical explanation; I was confident someone could explain the brain/double vision connection. It makes perfect sense to me now :)
It is amazing that the brain can adjust itself so quickly.
Jan
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Jan, I think "docs digging around in your brain" is pretty scientific to me. It sure sums it up pretty well!
Lori
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I always like to use "layman's terms" whenever possible ;)
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Steve, regarding your "steady cam" discussion. I remember now that after my balance symptoms first began 8 years ago (with a horrible attack of vertigo that lasted 2-3 days), I had oscillopsia for several weeks or possibly as long as a few months afterward (can't remember now). The best way to describe oscillopsia is that your vision when you're walking resembles video imaging you see when someone is walking very briskly with a camera; that is, the image you see bounces around. I used to call the condition "shakey camera" syndrome before I learned it actually had a medical name.
My apologies to the group for even mentioning the optic nerve in my last post under this topic. That was stupid of me to even bring that up in the context of a small tumor. I was trying to impart how the MRI often shows cranial nerve involvement (some nerves show up in cross-section, for example, on the films) but got carried away; it was a very late night post and I wasn't as clear-headed as I should've been to be posting on such a serious topic. I'll try to be more judicious and helpful in the future.
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Thanks everyone for the information. Steve one, that was a great explanation! I continued to have "shaky cam" syndrome for quite some time while walking. I kept telling people it was like my eyes needed shock absorbers. I never even knew it had a term "oscillopsia". Thanks Tumbleweed.
Jan, I think that your laymans terms are right on! I did feel like they were "digging around" and maybe even marching around in my brain post-op. A neurology itern asked me "why are you closing one eye when you look at me Mr. Buck." I politely said "Becuase I only want to see one of you!" ::)
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Tumbleweed -
no need to apologize for including optic nerve in your post. There is no such thing as a stupid post here on the forum. Any and all information might be helpful to someone, as all our situations are somewhat different. Don't ever hesitate to say what you think or know. A lot of forumites are very well versed in technical medical stuff - I am not one of them but I am amazed that they are this way.
Sometimes we get off on tangents, but that's acceptable too. Thank goodness, because I do that all the time :D
sabuck -
closing one eye really helped, didn't it? My docs thought it was a little weird - they kept asking "What's wrong with your eye? Does it hurt?" I had to explain that it helped me see normally. I even watched TV this way - that is, when I could "stomach" watching TV at all. It made me tired and nauseaus :P
Jan
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Jan:
I had the short-term, post-op double vision, too. I didn't even notice it until my third day out of surgery when I attempted to read a book my son had brought me. The double-vision thing was very annoying but like the stubborn guy I am, I kept reading as long as I could, anyway. I don't recall the double-vision affecting watching TV, but I never paid all that much attention to the nonsense that was usually on TV, so I might have just failed to register the double-vision. Forunately, it subsided fairly quickly and was about gone by the day I was discharged from the hospital (5 days post-op). I noticed a very mild version of double-vision my first few days home but only when reading (I read a lot). That disappeared within a few days, although the computer monitor was a little hard to read for another week or so. Its all good, now, although I'm due for another eye exam, soon.
Steve's explanation (via Dr. Medbery) was informative because I didn't think the optic nerve was involved with acoustic neuromas. Now, the double-vision thing makes sense, so, I offer thanks to my fellow moderator. :)
Jim
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I had the short-term, post-op double vision, too. I didn't even notice it until my third day out of surgery when I attempted to read a book my son had brought me. The double-vision thing was very annoying but like the stubborn guy I am, I kept reading as long as I could, anyway.
Boy, and I thought I was stubborn :o
I noticed the double-vision as soon as I opened my eyes post op - that is, as soon as the room stopped spinning ;) I'm a big reader also, but didn't have any interest in reading post op so I didn't attempt it. There is a lot of nonsense on TV and I usually don't watch it, but having no interest in reading and being unable to sleep, I resorted to the TV as a last resort for entertainment.
Jan
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Hello,
I myself developed double vision after surgery.
it is very hard to focus on any kind of reading for very long.
eve
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I thought I would give you my input regarding eye teaming and optic nerve compression disfunction. My son does have a tumor that compresses his optic nerves and has experienced double vision, visual field cuts and eye teaming problems. He has to close one eye and tilt his head often to get his vision correctly centered and single vision. We have used an neuro-opthalmologist and she is also trained in training the eyes to work as a team. We have had great success with this therapy and continue today even after 3 years. It is my understanding that even a blood vessel could put enough pressure on the optic nerve to cause these problems. I would really suggest that you find a good neuro-opthalmogist and have a visual evoked potential test done to see if the blood vessel is pressing on one or both nerves. It only takes slight pressure to cause these symptoms and you do not want the vessel to rub up against the nerve. It makes for a very angry nerve indeed. Kisses to your and your husbands foreheads. 16 :-*
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Well, I know that my AN did not directly touch my optic nerve, but since my surgery, the pupil in my AN eye reacts a lot more slowly to light than it used to. It used to be normal, but now my eye doctor says it reacts more slowly than he would have expected. Must be one of those strange things that happens to a rare few. And it explains why forgetting to put on my sunglasses when I walk outside renders me completely blind for a few moments.
16 - HOW THE HECK ARE YOU??? Good to see you back. Sorry if I missed your return, if it was in the past week, I was out of town and missed a lot of goings on around here!
Lori
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16 -
it's been a while. How are you? Are you back to stay?
I hope things are going well for you,
Jan
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OMG16,
There you are. How are you doing? Any progress? I hope things are getting better for you.
Steve
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Hey guys thank you for asking how I am doing. I will be having surgery on June 18th for debridement of the bone in my face along with a biopsy and cultures of the mass in my sinus and the bone. They have taken me off of my antibiotics for a month now and my fever is of course everyday along with the severe night sweats. My body seems to be trying to fight it very well as I am not septic yet. After surgery they will either do a massive resection or put me on antibiotic for up to possibly a year.
I have been gone lately due to an extremely huge work load, many Dr appts for myself and my Son and Vacation. My son had a tumor scare right before we left for Vacation (my husband and myself alone to Palm Springs). We went for his yearly neuro-opthamology appt and the Dr noted that his vision had decreased so much that she thought the tumor was reattaching to the optic nerves and was causing him to go blind. She also found a bleed behind his right eye so she ordered some new machine to test his vision without him having to work so hard at it. We found out the day before we left and went to see her 2 weeks later when we got back and his vision was even worse so we were very worried for him. It turned out that she was able to get his vision 20/20 for the first time since his diagnosis with the new machine and the bleed was stable so she will be watching him closely. We will just follow up with his neurologist in a few months and have his first MRI in 2 years along with a visual evoked potential test. Just another day in his life. He is still smiling and is trying to break the mold of how people perceive disabled people. His words of course not mine. He is going in the fall back to high school, actually online with the support of his counselor, his Dad and I. I think that he is headed for a wonderful life and I am so very proud of him! He has been told by SSDI that they do not think that he can ever work more than a few hours a day. I don't agree I think that given the right support he can do almost anything with his determination and abilities he has left.
Lori you did not miss my return and I want you to know that I am so very sorry for what you have had to deal with lately. Kisses to your forehead. :-*
Jan I am back to stay however summer is a very busy time for work and we do alot of camping and vacations. We go in July on our yearly house boat trip and I can not wait it is awesome to watch the wildlife from the beach on the lake and the sunsets are to die for. We load up in the hot tub on the top deck and turn the stereo up and just enjoy our Family and the enviroment around us. We go to Lake Roosevelt and rent our 60ft boat at www.dakotacolumbia.com if you would like to see the nice website they have. I would recommend this vacation for everyone to try at least once in their lifetime.
Steve I would like to say congradulations on your new found position. You and Jim both deserve the respect and gratitude that all of us in the forum have to offer you. Now hopefully we will get a summer soon in the pacific northwest!
Love you guys! 16
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OMG :-*,
So glad you are back!!! Missed you and all of those kisses to the forehead. I'm sorry your son has been so much, not to mention your own health issues. Your summer vacation sounds divine. Enjoy, but please check in if you can, because you are really missed :-* :-* :-*
Anne Marie
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16 -
Your son is a tough cookie, and I know he'll be able to do whatever he puts his mind to. He obviously has great support from him family. I don't think he's the type of person who will let anyone tell him what he can't do! Good for him.
I hope your medical situation gets better. You've been through so much.
Your vacation sounds wonderul. I can't imagine how beautiful and peaceful it must be.. Wanna take a few of us along with you for company? Oh, wait, that would probably cancel out the peaceful part, huh?
Glad to have you back!
Lori :-*
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I believe if I took all of you we would definately be kicked off the lake and not allowed back, but what fun we would all have. My son would really enjoy the likes of you guys you would fit right in. After your freezer incident I would be worried about you in the hot tub it would be way to deep for you we would need a spotter for you. LOL ;D 16
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I'll bring my inflatable ducky life preserver, just in case. ;D
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You of course will need to wear it all of the time or the kids will hide it from you. ;)