[sparerib]

#1058899

I am seeing that no one has answered about the use of botox for double vision, so I am distressed that I cannot get any info. My online research turned up nothing. I see the ophthalmologist again today, Wed. March 14 and I have to tell him that the instances of double vision have now increased, although my eye movement, even up and down, is better. I really do not know what to do. I am not prepared for another surgery as I have had two surgeries in the past 12 months, one being a 5 hour back surgery. So that is too much general anesthesia to contemplate another dose within the 12 months period.

I will see what he says. I am having to use more drops and glop than the previous 12 months but since the orbital decompression, there is no change apparent in the look of the eye–at least not to me. I truly would like to think about the eyelid surgery, but know I cannot until this muscle issue is resolved.

I will post about what the doctor says but any words of wisdom are appreciated. I have noted what Shirely and Kimberely have posted that a) more than one muscle surgery gives better results and; b) that only two muscles at a time should be addressed.

At this point I am kind of inclined to wait till after the next conference in the fall. I know that one will be on the west coast and I will be attending. I found the one I attended in 2010 to be amazingly important as a source of the best information.

[Kimberly]

#1170767

Hello – One of the reasons you aren’t finding a lot of info on Botox is that using it for double vision is considered “off label”. So there are limits on promoting the drug for this use.

There was actually some discussion about switching the conferences to a series of one-day formats across the country, rather than having a single multi-day conference. The recent survey that the Foundation did revealed that members who attend the multi-day conferences really get a lot out of them, but that cost is a barrier that keeps many people from attending. (And the conferences are not money-making events for the Foundation — registration fees do not fully cover the expenses of securing hotel meeting space, providing meals, arranging for travel for the speakers, etc.). The Foundation should have a decision on this soon, and we will get it posted on these boards ASAP.

[snelsen]

#1170768

Hi, maybe there was poor communication in something I wrote, or perhaps misunderstood. I’d hate to have you thinking the two items that you referenvf were correct. Cause they aren’t. Of course, your eye surgeon is the best person to give you this info after your eyes have been examined.
To clarify.
1. I certainly did not say that more that muscle surgery (strabismus) gave a better result. Given the scenario that the outcome was not as good as you wanted, perhaps a second surgery would be indicated.
2. Not sure where the impression that not more than two muscles should be done came from, either. The purpose of the strabismus surgery is based on the affected muscles of your eye. It will be on the number of muscles that are affecting your vision, or causing double vision. In my case, the only muscle in both eyes, that was NOT affected was the superior muscle in one eye. So, I had six muscles moved in one eye, five in the other. When I say affected, I mean that the muscles were fibrosed, or not elastic anymore, so I could not look up, to the sides, or up/to the sides or down/to the side. in summary, the strabismus surgery gave me my life back.
***So you know, a general is not used for strabismus surgery. It is an outpatient procedure, and you have what is called conscious sedation, which means that you are asleep with and IV med called propofol. But if they stop it , you wake up immediately, and can answer their questions. I did this several times, and the questions was, “do you still have double vision, or is it single vision now.” I love this surgery.

Regarding the conferences, I missed Boston, but went to my first one in San Diego the year before. They are, as you know. wonderful!
Please write if you have questions or need clarification on anything I wrote.
Shirley

[Author]

Posts