Okey-dokey...I'm going to try this again.  It seems that my first attempt has become lost in the ether, but if it shows up at some later time, just ignore this one.  Sheesh.

 

I wish we could advise you about potential treatment, but we're not doctors and it would be an exercise in frustration for anyone to lead you in making this important medical decision.  I know how desperate you are for any relief of your symptoms and I hope that you also know that we all understand how awful that is for you. 

 

I am sorry to hear that your doctor is not being more supportive in your quest for information.  Whatever her reasons for not recommending a particular course of treatment, it would be nice, for you especially, if she were able to help you with this issue by providing some data that supports (or not, but that is really expecting too much) her position on the use of botox/botulinum toxin.

 

It would also be nice if there were indisputable evidence that supports either the pro or con positions on the use of botox for SOM.  Unfortunately, there isn't any hard science that buoys either position.  There are abstracts and other reports that indicate that botulinum toxin has been able to provide temporary relief of SOM symptoms.  This relief is of unpredictable and varying degrees of success and of duration.

 

The following information is from research that I have done on the use of botulinum toxin injections (most of which can be found in our links), and the sources will be linked at the end.  I am happy to provide this information, but encourage you to have some, more serious, conversation with your doctor and to do some more research on your own.  The more information that you have, the better able you will be to make any decision about this.

 

The most often reported injection site is directly into the superior oblique muscle of the SOM affected eye, most often done under general anesthetic and without having to make an incision.

 

From my research, the longest length of time that an injection has been fully effective is four months, but I suspect that there may be additional reports of longer effect.

One of the most often reported side effects is a weakening or droop of the eyelid of the SOM muscle that received the injection.  For some of the patients, the weakening/drooping effect lasted for at least half of the effective period of the injection.  There have also been reports of some, temporary, facial paralysis.  Again, the degree and duration were varied.

 

The injections are not particulary long lasting, only a few months, but the relief provided can certainly be appreciated, even by those who would never consider having a needle inserted into their ocular orbit.  Additionally, it seems that the injection can be safely repeated as needed, but that the beneficial effect decreases with each subsequent injection.  I have not been able to find any serious reports that give decent data on how many injections are given before any relief of symptoms is overwhelmed by the side effects.

Here are some links to give you a bit more information.

 

Abstracts: Botulinum Toxin

 

 

I'm not sure if this link still works, but I suspect that it will take you back to the link noted above this one:  http://www.blackwell-synergy.com/doi/abs/10.1034/j.1600-0420.1998.760106.x

 

Here is a link to an artical at Newsweek that was shared by Nicola:  www.newsweek.com/id/131749

 

I hope that some of this helps, but I'm guessing that it isn't going to be as helpful as you need. 

 

Go back to your doctor and make sure that she knows how severely disabled you are by your SOM.  Make sure that there isn't any miscommunication between the two of you.  She must understand that you simply cannot go on this way anymore.  When you make the appointment to see her, ask that she have ready the scientific literature that she has found so that you can go through it together.  Take your botox/botulinum toxin research with you and go through every bit of it together.  Do not allow your appointment with her to end before you are able to share every, single, last thing that you need to tell her about your SOM and how it affects your life.  This is a time for you to be your calm, informed, prepared and assertive best.  That shy part of you, the part that wants to be nice and not make trouble needs to be sent off somewhere, probably the library where she can be her dear, quiet self and not bother anyone whilst she reads romance novels (although romance novels are no longer the innocent bodice-rippers that most of us remember, and now more closely resemble something you would read covered with a plain, brown wrapper, so perhaps she should re-read a Newbery book).

 

For you to have reached a place/treatment of final resort and to have it dismissed without thorough investigation is more distressing to me than I can express. 

Know, always, that we understand what you are experiencing.  Not only do we understand, we are able to sympathize and empathize with you.  Whatever you decide, we are here for you and will support whatever you choose to do.  You know that old saying about family?  The one that home is where they have to take you in.  Or, something like that.  Well, Melanie, this is your SOM home and not only will we always let you in, but we will have fresh pastries, tea, cream, and all manner of tastly and comforting diversions and words and hugs and laughter and tears.  Well, all that and a decent martini.  And a bunch of chocolate.  But, mostly love and support.  Let us know how you are doing and what happens if you decide to tackle your doctor again.

I forgot to add the additional link that I have for the researcher mentioned in the Newsweek article.  He is Matteo Caleo, and the link to a more informational article at ScienceNews.org/Society for Science & the Public is:

 

 

 

Oh, to be at your wits end with this and have your doctor not take you seriously, or at least not want to take the time or the effort to listen or research something for you is all to familiar to me.  I suffered with constant symptoms every day for a year and my opthalmologist simply kept saying "It is an inconvenience that you learn to live with."  Well, it turned out my family doctor at the time knew more of this condition, and was much more sympathetic than they eye specialist. (At one time, my family doc suggested botox if we couldn't come up with something else.)   My opthalmologist now still does not treat me for that, only my glaucoma.  Thank goodness I mentioned this to my family doc when I did.....my only suggestion would be that if you cannot get the help you need from this doctor, check around and find someone who will, because as we all know, this is not simply an inconvenience!