ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Wwoodian on December 29, 2009, 01:20:05 pm
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I had middle fossa surgery on November 20. My surgery was a great success in that my hearing was preserved and I have no facial paralysis--I know that I am very, very blessed with that. Unfortunately, I have had double vision since my surgery--I am at 5 1/2 weeks postop now. I have seen a neuro-opthamologist and had another MRI and MRV to check for swelling. The Opthamologist said that it is the 4th nerve being impacted by the swelling, and that it should go away. My surgeon has never had a patient with this side-effect and is very defensive about it, which makes me feel worse. Both of my eyes are working correctly on their own, so that is good news. If anyone has experienced this and can give me any kind of assistance, I would greatly appreciate it! I'm so grateful for the fantastic outcomes that I have had, but very, very discouraged and depressed about the vision. I would trade my hearing for my vision in a heartbeat! We didn't even know that it could be a side effect. Thanks for any help you can give. Jill
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Hi Jill,
I had my op back in March this year. I had double vision for a good few months following the op. When I mentioned it to my surgeon, he said it should go in time but it could take up to a year. As it happened with me it took a few months to sort its self out. My surgeon didnt seem at all concerened that I was experiencing double vision and I was of the understanding that it was a normal side effect. Not every side effect will happen to everyone, it all depends on the person.
So i wouldn't worry about it too much, im sure it will clear itself up in time,
hope this helps,
Louise. x
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I had my surgery over a year ago and had double vision for about 5 months after. My surgeon also thought it was a very common side effect and wasn't worried. I still have little bouts of it when I am super tired but for the most part it is gone and I don't have any problems with driving etc. I hope yours resolves itself soon. It's very frustrating!
Julie
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Hi, Jill ~
Although I'm sorry you had an acoustic neuroma to deal with, I'm glad you've found the ANA website/Discussion Board, decided to register and post your question.
First, congratulations on what seems to have been a very successful AN removal surgery, Middle Fossa style. Unfortunately, in some AN surgery patients, the 4th cranial nerve can be negatively impacted post-op. The good news is that, assuming the nerve was not damaged during surgery or by the growth of the now-removed tumor, your double vision should self-correct as the nerve 'settles down'. I wish I could put a timeframe on when that will occur, but no one really can, including your doctor. However, his defensiveness is unfortunate and indicates some insecurity on his part but frankly, there is really nothing you can do about that. Many AN surgery patients experience short-term double vision immediately post-op. I had a very successful surgery but experienced double vision for perhaps three days immediately following my surgery. It disappeared and never returned. I trust your vision will also return to normal, soon. The fact that your eyes are otherwise fully functional is very encouraging. I don't know if there are any specific exercises you can try to help resolve the double vision but if there are, I'm sure one or more of our knowledgeable members will be posting that, soon. Meanwhile, I hope you'll be a frequent 'visitor' to the ANA forums and share your progress with people who understand what you're dealing with and are totally supportive.
Jim
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Jill -
double vision post AN surgery is more common than some think. I had it myself for 3 or 4 days post op but then it went away. My eyes worked fine on their own also; the double vision occurred when they worked together. My AN was on the 7th & 8th cranial nerves.
One of our forumites, Trish (user name Calimama) had double vision for many months before it finally cleared up. Here is a link that she gave us that you might find helpful http://www.levine-eyesurgery.com/pub/acoustic3.pdf I'm not sure why you were told about the 4th cranial nerve, but in this publication check out the section on Sixth Nerve Involvement.
Trish had twins recently and hasn't been on the Forum much lately, but I'm sure she'd be happy to tell you about her experience with double vision and what finally rectified it if you PM her.
Good luck,
Jan
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Jill .....
Adding a welcome to this forum ..... and I, also, had the double vision but only severely for a few days following surgery. It was explained to me that the brain was working very hard to maintain my balance, following the removal of the vestibular nerve, and that was interfering with visual perception. Even now, nearly two years later, when I am extremely tired I have to work hard to maintain my focus.
I think double vision is rather common following AN surgery so I am surprised you were told your doctor had never seen this side-effect.
Best wishes and let us know how you are doing.
Clarice
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Thank you for all of the nice welcomes. It does feel so, so good to hear from people who have been through this, and had some of the same symptoms! I was told that there would be vision problems--and that they would correct. My vision was way worse after the surgery, and actually my focus and tracking have gotten a lot better. I had my surgery at the House Ear Clinic in Los Angeles, which is supposed to be one of the best. My tumor was only one centimeter, so they don't believe it caused any damage. The 4th nerve is the one that is connected to the muscles of the eyes, and that is what is happening--my left eye (the side of the tumor) is not moving in sync with the right. I don't know if that is the difference that the surgeons are saying is unique? I agree that it is very odd that they haven't seen this, because they do hundreds of surgeries a year--it is also one of the big reasons that I feel stressed about this. I think my surgeon was really proud of the outcome of my surgery, and now I'm raining on the parade! I think that is why he is defensive. They also have told me that it is likely that my vision will return--but it could take months or years. I'm finding out I'm less patient than I knew! I feel very glad to hear from all of you, but especially relieved to hear from people who's vision returned after months--because that is what I'm hoping and praying for. I guess I was just wondering from them if there was anything that they did or took that helped the process. I find that when I do too much (which is not much at all!) then my vision is worse the next day. It is almost impossible not to though! Thanks again for the encouraging input!
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As always Jan has a very good memory of the stories of many forumites, and she correctly pointed out to Trish.
I followed her situation closely, since we communicated almost daily - basically her double vision corrected itself in about 6 months post surgery. She didn't really do anything about it, other than searching for a descent looking non-pirate style eye patch from what I recall. But she was told that if it doesn't correct by itself, corrective surgery can be performed. She was also told about prisms lenses that can be attached to eye glasses. However opthalmologists will tend to wait until things stabilize before prescribing prisms.
My understanding is that double vision has something to do with the 6th nerve, the nerve that controls the muscle movement. In any case, chances are really very good that this will go away within a few months.
All the best,
Marianna
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Thanks for all of the great input and encouragement. I was wondering if anybody else has / had a problem with their vision being able to focus on movement after surgery? For example, riding in a car and seeing the moving traffic? I'm at week 6 and it is still almost unbearable to be subjected to that much movement. Please let me know if this is normal?
Thanks again for your input--it helps greatly!
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I had very pronounced problems with gaze stabilization after surgery. What you are describing about the car riding and moving traffic was a significant issue for me. Fortunately my husband or daughter-in-law were able to drive wherever I needed to go so I just rode along and closed my eyes. It is a little hard to remember now but I do not think I was still closing my eyes at 6 weeks out. Now I rarely think about it ..... at almost two years out.
You may benefit from vestibular therapy. I found it extremely beneficial to do the exercises daily at home that the vestibular therapist (needs to be specifically trained in vestibular therapy) prescribed. In the meantime check out this web site: http://www.dizziness-and-balance.com/treatment/rehab/gaze%20stab.html
If you can not tell any improvement in the past month, I would certainly contact your doctor for additional advice.
Best thoughts.
Clarice
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Thanks for all of the great input and encouragement. I was wondering if anybody else has / had a problem with their vision being able to focus on movement after surgery? For example, riding in a car and seeing the moving traffic? I'm at week 6 and it is still almost unbearable to be subjected to that much movement. Please let me know if this is normal?
Thanks again for your input--it helps greatly!
Yep, I had the exact problem as you describe it. While riding in a car looking forward it was not that bad. But, but the periphery of my vision was extremely bad. It seemed like my head would get locked on to something going by the side window and I was trying to focus on in the periphery of my vision causing my head to turn sideways as I was passing by. Once you start moving your head around your only heading for dizziness and nausea.
It seemed like to me that it was more of my eyes not tracking together rather then double vision as I started really started testing my vision. I did have delayed facial weakness and believe that the swollen nerves and tissues around the temple area had a direct effect on my vision, as your doctor said. My vision is still not back to were it was but is improving with time. I can drive now.
I'm suprised to read that your Dr. who is one of if not the best would make you feel uncomfortable.
Oh by the way, I lost my hearing and I would do almost anything to get it back. So don't be so quick to want to trade it for anything.
One more thing. I see that we were at St. Vincent's at the same time. I was in room 609
Patients.
Mike
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Ditto on all the above.
I had surgery 6/08.I had double vision for about 8-9 months out,along w eye tracking issues.Reading this thread takes me back n makes me realize how much HAS improved over the last year and 1/2.
I have come a long way....and know i still have a long way to go......The migrains are gone(KNOCK ON WOOD)
I am still off balance...it varys week to week.Some days i feel like my head just got cut open yesterday.
Overall though....everything is better then it was..so thats improvement.
Still have minor eye tracking issues.Can not see in the dark.
I have come to terms the "old" me is the "New " me.
I wish everyone an improvement in the New Year ahead......any improvement is good improvement!
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Thanks for the input. It really helps. We weren't aware that there was vision risks this serious (other than short term) which has made it scarier. I'm so glad to read that others have experienced some of the same--not glad for you!--but glad that its not completely abnormal.
Dr. Friedman is a very positive man, and has very excellent credentials. I was very happy with my choice, but have not been happy with the recovery. I'm hoping that his "shortness and defensiveness" were more related to the fact that he was headed out of town for a 2-week vacation. He's been back since Monday, and I still haven't heard from him though. I'll try again tomorrow to see if there is vestibular therapy available--it is House Clinic--there has to be. Both Dr. Friedman and the doctor that was covering for him over Christmas stated that they have not had a patient with double vision. I find that really surprising too--really surprising. The neuro-Opthomologist said that he has had a few patients who have had it--so that felt better. I want to be positive and rely on the "it will get better with time"--but it is hard to wait months if there is something that I can do today to help in any way.
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Mike, that is crazy that we were neighbors at St. Vincent's. Boy that was an unfun time! By the way, I was not the person yelling like mad during the night--I hope it wasn't you!
I'm so, so sorry that you lost your hearing. That was the main reason that I opted for Middle Fossa surgery when I did. I had already lost my hearing completely twice, but it had returned both times. My tumor was fairly small, but I wanted to gamble with saving my hearing before I lost it for good. Vision problems weren't even a consideration for me. I'm very glad to have my hearing, and don't want to get to the point where I am unappreciative for the positive. I'm glad to hear that you are driving again--in that way you are far outreaching me. I drove down my driveway, and discovered that I'm nowhere close to being able to be behind the wheel. That loss of independence is not something that I was prepared for. Dr. Stefan made it seem like I'd be up and going good after such a short time. I'm glad to hear that some people are. I guess we all have our separate trials. Hope that you continue to adjust to your new changes.
Thanks for sharing, Jill
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Hi Jill - I was also very surpised to have vision problems, at least such a severe one, after surgery. I had double vision and wore an eye patch for a few weeks until I felt well enough to hunt down a neuro-opthomologist. He fitted me for prisms that attached to my regular glasses (they were adhesives and cost about $40, I think), and they were adjusted every few weeks. After four months, one day my eyes just seemed to straighten out, I remember it very clearly when it happened! I have to say it was probably the worst aspect of my recovery, maybe because it was so unexpected, and something I had never thought about, and I was scared it wouldn't go away. Maybe you might want to discuss the possibilty of prisms with your neuro-opthomologist. Just a thought. Best wishes with your recovery! I'm sure it will go away, and I hope quickly!!
Take care,
Martha
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Hello,
I too am experiencing double vision. The images of the right and left eye do not merge as they should. The image in the right eye, my surgery side, is slightly above and slightly tilted to the left. This is very confusing to me and I really have a hard time looking through both eyes. So I have taken a pair of glasses and taped one side to block the image on the right. I end up seeing kind of a screen which I have to ignore but it is much easier that trying to ignore a second image.
At night I just wear an eye patch because the lights from other cars are much too bright when I am driving.
Here is a picture of my loving wife and me about 2-1/2 months after my surger.
http://www.itsupportnet.com/surgery/lovebirds.jpg
Best of luck to you. I hope that your vision issues and mine resolve soon.
Michael
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Michael, I too had double vision for a about a year after AN surgery. I wore tape on my left lense too. My double vision was up and tilted too. Finally after 3 eye muscle surgeries and slight prizms in my glasses it's ok. That and the dry eye really is a pain. I also don't have feeling in that eye and side of my face. Karen
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Hi Debbie,
Wow, a year huh? That isn't very encouraging. So it didn't resolve on it's own. You had various surgeries? What exactly did you have done if you don't mind me asking.
Michael
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I personally had surgery in August of 2008 and I have had double vision the whole time. However, it has been quantitatively improving at a very slow rate now for the last 18 months. During normal eye movements I would say my eye moves about 50% of the way over, which is an improvement over not moving at all, rather it was plastered as far medially as possible. When I really really try, nystagmus and all, I would say it can move about 75% of the way laterally. I didn't see any improvement for probably 4 months I would say, and the eye wouldn't budge past the middle position for about 12-13 months I would say.
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Hi,
My eye tracks with the other one as far as the doc can tell. The eyelid closes mostly when I close the other eyelid. I can no longer close the right side (surgery side) independently. The vision itself is a little off because I have ointment in it most of the time so I have not been able to test it. But the eye has been irritated and is probably out of shape because of the sagging muscles, and sagging eyebrow.
But the double vision is interesting. As I mentioned, it overlaps the image of the left eye, is slightly up and tilted a little. I don't know what is going on there.
Michael
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I had double vision for a number of months post AN surgery. It was a 14 hour surgery and highly vascularized tumor which is why it took so long. Plus I had a very detail orientated surgeon that said he did his surgery on his patients as if they were family members. However, he was defensive as well when I came back for a follow up in 30 days with a completely paralyzed face he rushed me back to the back of the office to get me out of public view. I was not a good advertisement for his services. I'm still happy with his work but the follow up was non-existant. My experience taught me to be a proactive consumer and if I do not get the answers I need or want move on. Usually someone does have an answer. Because my vision normalized doesn't mean other's will, but I can report that it did and that it seems early yet in your recovery.
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I have awesome news to report! My double vision cleared! I had a horrible cold a couple of days ago--the first bug I've gotten since surgery thankfully. I was sneezing so hard I told my husband I felt like I was going to blow a hole through the top of my head! Following a miserable sleepless night, the next morning I realized my vision was normal again! I don't know if it was a coincidence, but regardless I am celebrating!
Thank you to everybody who responded by giving their experiences with double vision too. It truly gave me hope and knowledge that I couldn't find anywhere else. I hope that others (like you Michael) who are still experiencing double vision will have an end in sight as well.
I'm so happy to be on an easier track toward healing!!!
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I'm glad that your double vision cleared up, it must be truly nice. I was just wondering, were your eyes crossed before and now they aren't? Out of surgery my right eye wouldn't move past middle no matter what. However, after week six post-op it spontaneously started moving more medially until by week seven it was practically perfect. In the matter of one week it pretty much fixed itself by 50%. It was definitely followed by physical changes in the muscle working though. I must say I was kind of waiting for something similar to happen to my left eye, but it's been ~18 months and the progress, and yes there has been some, has been slow as snails.
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I see that some of you had double vision for a long time. Did you manage to drive at all during that time, if so did you have prisms or some other form of help to correct the double vision until it cleared up?
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Hi Sabsemn .....
This thread is very old so many of the original posters may have moved on in their lives and no longer check the posts on this thread.
Suffice it to say, if you have pronounced double vision, it would not be a good idea to get behind the wheel of a car. I am not an ophthalmologist or optometrist so I do not know what effect a prism might have on your vision.
In my case, the double vision was constant for about two weeks immediately post-op, but as my brain healed and compensated, it became intermittent. Fatigue and stress always made it worse so I knew not to drive under those situations.
Are you post treatment and have double vision or are you just wondering what to expect? Not everyone has double vision post-treatment.
Clarice
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It's post-op, no, no driving like this. I am actually inquiring for my girlfriend. Just wondering what others have experienced, but seeing the ophthalmologist until May, which seems like forever.