Botox® Experiences - Judy Frederickson

I am writing about my experience with Botox® only because a member requested that someone who has had a positive experience with Botox® respond.

First let me say that, as many have already, Botox® is not a cure whereas MVD, if all goes well, may be a permanent cure. The decision to have surgery seems to be easier for some than others. Up till now I haven't been able to bring myself to that decision and the biggest reason is that Botox® has worked well for me for many years.

I have the injections given to me by a neurologist who specializes in movement disorders and is very skilled. I receive a total of 19 injections ranging from my eye down to my chin. Parts of the 19 are on my unaffected side to help even out the effects. My insurance pays for them so I only pay a $12 co-payment every three months. Actually, I am now down to every ten weeks as the HFS has progressed or the Botox® is just not lasting as long.

My overall experience with Botox® injections for my HFS has been good. But there are some side effects even when given by an excellent doctor. The muscle weakness near my mouth is what bothers me the most. Getting my mouth open wide enough to take a bite out of a thick sandwich requires some creativity! And the fact that my smile isn't what it used to be is something that bothers me but I've learned to live with. I work with so many children with major disabilities that these side effects seem minor to me.

So I guess what I'm saying to you is if you have a skilled doctor who is familiar with HFS I wouldn't shy away from Botox®. I do know that many of the members here disagree with me. I have even had some members email me privately as they feel afraid to talk about Botox® in these emails due to the fact that there is so much criticism and such a lean toward the MVD's. So feel free to respond to me, personally, if you would like, but I would hope that all of the members respect each other's decisions and realize that this is often a journey of discovery and we can only do what we can do at the time.

I have learned so much by reading everyone's experiences and I cheer on and pray for each and every one of you who have or are soon having their MVD's and I celebrate with you when you are spasm free!!! I admire your determination and courage and with each success story I do tend to think about the possibility of such a surgery for me at some point in time. As for now, however, I'm going for my next Botox® on Wednesday morning and have my December appointment already set.

Hope this helped you in some small way.

Permission granted the HFSA to post Botox® Experience on website.
Judy Frederickson, October 01, 2003

 

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