Re: HELP!!!! |
Hi Becca Iam sorry you are having such a problem.You might want to call your Doctor. Mine told me to wait 3 weeks then call him if they didn,t work don,t know what he would have done.
God Bless & good luck.
Colleen in IL
Becca, I'm so sorry for you - don't know what to say because I've never had that happen to me. I'm saying a special prayer for you tonight. Please try and stay calm (easier said than done I know) - stress won't help you at all. God Bless
June in Toronto
That happened to me with my first set of injections. I found a new doctor through the foundation and he had me wait 4 weeks and then reinjected me with success.
Becca, I'm really sorry that you are having difficulty with your eyes. You might call the doctor that gave you the injections and go back in for another visit so that he or she can see what is going on. You might have a ptosis(droopy lids that just hang at half mast or closed) from the botox, which will gradually wear off. If this is the case, your doctor needs to be aware of it as it is usually technique related. When you say that it is not as tight, I assume that you mean that your lids are not squeezing closed, now, which means that the botox is working. If the squeezing and spasms are gone, you are probably either dealing with apraxia or ptosis. In either case, your doc needs to know. There is probably nothing that can be done until the ptosis(as a side-effect) goes away, if that is what it is. Hopefully, your doctor would be able to tell. I feel for you as I have much the same problem. If your doctor says that it is just a ptosis and you will have to live with it and that there is nothing that he can do to keep it from happening again, you need to find a new doctor. If you have apraxia, it is very difficult to treat. Keep us posted and let us know how you are doing.
Shirley in AR. where it is a beautiful spring day. Wisteria and azaleas are blooming.
My wife, Yvonne, is in the same situation, she cannot open her eyes at all since the onset of BEB and the Botox did not help using the "normal" dose, she now has an excessive dose, more in the left eye than right, which has the effect of totally killing off all muscle usage in the lids. Along with this she now wears spectacles with a Ptosis prop or as you Yanks say "Eye crutches" as she was herself "Blind" for some time being able to see, albeit in a very limited way, is a Godsend. She is not riding her bike yet but is threatening to as her confidence returns, I've hidden the car! The props might be your answer, hope this helps and best wishes from us both here on the Isle of Wight.
Dear Becca, I can understand your disappointment in not having Botox work and you keep waiting. I was diagnosed Aug 1999 and had surgery in Nov. 1999 and started on Botox. I have to go every seven weeks--Once I went and waited for results for three weeks and then called my doctor and said "nothing is happening" and went again and had to be reinjected because perhaps it was a bad batch... or should I say less potent..This has only happened once and the doctor that treats me uses lots of Botox so I don't believe it was not fresh. It took me over one year to learn when shots were good and when they were not so good. I am fortunate that they work for me...just wish I could go 3 months like so many other can. I just have to tell myself-- I finally know what I have--know what I have to do to treat it-- and continue doing what works and when that does not work, look for an alternative. We all are so very different and respond differently to treatments. Secret is to reach out and tell your story and listen to others and answers appear..Every day is new and I learn new things daily and so thankful for this Bulletin Board.. I have not posted in quite a while, but a silent listener... Mary
Re: GLAD YOU POSTED MARY G
So glad you are posting Mary - you seem to have a lot of common sense about this disease and botox. Keep posting and don't just stay a silent reader - people need you, and as you say you are `thankful for this bulletin board'. Take care
June in Toronto