Re: Stretching skin |
In a word-yes. You will stretch that skin but the pulling and squeezing that occurs with Blepharospasm is going to do the same thing. It can't be helped, I'm afraid. That is why if someone gets that loose skin removed surgically for cosmetic or functional reasons and the BEB is not controlled with BOTOX or surgical removal of the offending muscles, within a time frame of a year or two, you'll be right back where you were before the surgery-with lots of loose skin.
Ain't life grand? It's a real bummer for sure.
Shirley in Arkansas
Shirley - how are you today?
i'm walking around confused. i went to kelly
saffell's doctor here in dallas, and his
bedside manner is much better than my old doc.
however, he used different injection sites
than the old doc, and it's 4 weeks out and
the relief hasn't kicked in yet.
i wonder if i should have the old doc fax
a note concerning his injection sites to the
new nicer doc.
it is always something isn't it!!!!!!!!!!!!!
i can see my eyelid skin slowly stretching.
Re: Shirley - how are you today?
Hi Rhonda, I'm doing ok-not great by any means but hanging in there. I'm in the same boat with working with a new doctor to give me my BOTOX injections. He has injected me with one set and I will be going back for my 2nd set on Wednesday. It's been 9 weeks since my last injections and my eyes are pretty much wanting to stay closed most of the time.
It takes time to work things out with a new doctor and get the sites and dosages right for each individual. You can certainly have your records or the injection sites and dosages sent to the new doctor especially if they worked better. Different doctors inject differently and even if the new doctor has that information, he still won't be able to inject you exactly the same way. Each time, unfortunately, will be a little different anyway you look at it. What is so frustrating is that you have to wait for months before you can have someone try it again and see if it works the next time.
I wish that it was all an exact science but there is lots of room for error here.
I'd work with the doc that you like and has the best bedside manner and try to get things worked out with him. The wheels grind slowly sometimes. We want to hurry up and have relief and be able to function to some extent and we wait and we wait and we wait and then we try again. Jeez, I'm depressing my self.
You're right-it is always SOMETHING.
Take a deep cleansing breath and we'll all STRETCH together. :-)
Take along an index card when you go for injections and have the doc draw a picture of your eyes, nose and brows on it and show where he placed the injections and how much he injected at each site and keep that for your own records. Or ask for a copy of his diagram each time.
I like for them to show me on paper before they inject so that I can ask questions or object to a certain site or offer an opinion.
--modified by Shirley-Arkansas-USA at Mon, Mar 11, 2002, 20:41:26
Re: Shirley - how are you today?/shirley
This last paragraph is important to me. Although i trust my doctor , I am usually too apprehensive to just get it over with, that i have never had the nerve to do this. Do you think he would be offended?
Re: Talking to your doctor
Kathy, read my post a little further down under the subject "hi Delaine and Shirley". I talked about how to do this a little more.
I would hope that he wouldn't be offended-you are just asking him to draw you a picture. It doesn't have to be neat or artistic and a lot of doctors already have a diagram that they are going to use to chart where they gave the injections, anyway. You are just asking to see where he plans on injecting you. Take it slow and just ask a question or two after he marks the sites for you. He will just know that you are interested. You don't have to tell him what to do-just tell him that you are curious about where he places the injections-that you are trying to understand it all better. That should not offend him.
Shirley in Arkansas
Re: Talking to your doctor
I'm not Shirley, but................
Did you sign a form to have your records from the first doc sent to the second? Your Medical record should have a drawing or description of injection sites. Discuss it with your new doc and working together you might can come up with the sites and amounts that work. Also it is possible the lot batch your new doc used didn't work. I've asked several doctors and they say this happens and needs to be repeated. Allergan will send them the medication at no charge to you if they push the issue as others have. Just an idea or two to try.
hi delaine & shirley
thanks for your suggestions.
the doctor i left upset me emotionally very much.
he just about came out & said that i was one of a
few if not the only patient taking a large dosage
of botox, (100 units). once when things weren't
going well he said he thought something else was
going on with me along with the blepharospasm, (i
inferred he meant emotional problems). his words
had a way of hurting me. i think he was a good
at kelly saffell's support group meeting, another
lady had used this doctor once, and she said he
enterred the room mad and left mad. ken, my husband
told me i was silly to internalize his words cos
he's probably like that with everyone.
i just can't take anything but a kind bedside manner
and that is what the new doctor has.
the thing i don't know what to do about is what
you ladies are suggesting, working with the doctor
on the injection sites. i will have my records
shipped over. dr. merritt, the new doctor uses
more injection sites and they are in radically
different sites. i don't know how to suggest
the "right sites". i only know that i can
show him the other docs sites. how do you ladies
know sites to suggest. my eyes don't spasm, they
i've been thinking about it and i guess my eyes do
Mine generally just close or squeeze real tight. One might consider this a spasm or not. When the BOTOX is really wearing off, it is like my whole face is involved in the squeezing and I would call this a spasm.
Shirley who needs Virginia to define "Spasm" for us. She is probably out in her garden or playing in the dirt or possibly mud, now.
--modified by Shirley-Arkansas-USA at Tue, Mar 12, 2002, 11:41:19
I may have a rare brain disorder, but I still have sense enough to come in from the rain. I have wondered what people meant when they referred to spasms. Webster says a spasm is "an involuntary and abnormal muscular contraction." That covers a lot of territory. I guess in those terms, my eyes spasm, since I definitely feel the muscles contracting abnormally and involuntarily. I think of it more as squeezing, too, but I guess that's what a contraction is.
Virginia in rainy Alabama
Thank you Virginia-just checking to make sure you were still there and ready for action. Of course you have sense enough to come in out of the rain. I'm just glad that you also remembered to bring your Webster's back in with you. :-)
I guess that I could have looked it up myself but I find it easier and a lot more fun to just ask you to do it. ;-)
Now, we've all learned something new today and don't have to worry about that old "spasming" word again.
Shirley in cloudy Arkansas who sent her rain to Virginia
Re: spasming /Shirley
You also sent it here. We need it but it is so depressing and dark. My pussy willows went to hell and seed as my eyes were bad when they needed to be cut back. Perhaps they are valuable little tree seeds now? This tree did very well under my care.
kathy who is listening to Dido's cd. She is very good.
Who is Dido? Thanks.
Sally in North Idaho who likes to keep current!
Re: hi delaine & shirley
My first BEB doctor was a piece of work. He was very cold and unsympathetic and basically had the "God" complex. I went to him for almost a year as I didn't know where else to go. As I learned more about BEB and went to the yearly conference and listened to the past year's conference audio tapes, I became empowered to suggest things to him and to question him. He didn't take it well and said that he had been giving the injections for many years and knew how to do it. When the injections didn't work well, he told me that I was not responding in typical BEB fashion to his injections and he was no longer so sure that was what I had. I stayed with him long enough to get a decent letter of recommendation for me for SS disability benefits and then I never went back to him. He had told me that he didn't see any reason for me not to be able to go back to work. Duh! When I asked him if he would hire me as a nurse in his office, he laughed at me. Yes, some docs can be hurtful. I knew enough about doctors to know that I wasn't the one with the biggest problem-he was.
It may be a little easier for Delaine and I to question a doctor or to make suggestions since we are both nurses and have worked with doctors in the past for many years. It can still be intimidating.
I do think that a certain amount of power and bravery comes with knowledge about the disorder. The more that you know about it the easier it will be for you to communicate with your doctor and actually have them listen to you. The yearly conferences are a good place to gain information and to see doctors on a different level than the average person has seen them before. In working as a nurse with doctors you really get to see them as people with flaws and warts and also their sense of humor (some). The conferences provide this same insight to some degree. After attending a BEB conference, you will more than likely develop a better relationship with your doctor or start looking for a new one.
In suggesting a certain site or change, that's where the index card or diagram comes in. You may not need to suggest anything. Before he gives the injections, hopefully he will look at your eyes and have you squeeze them tightly closed and see where he needs to inject. After he does this and before he injects you, ask him to draw you a picture or diagram and show you where he plans on placing the injections. He may try to tap you on the face and point to sites on your face where he is going to inject (I hate it when they do this-like you can see where he is pointing!). Just tell him that you can't see that and you would like a picture or diagram. He really should be willing to do this for you. When he does, it is simple enough to point to various sites and ask "what area is that one going to help" or "why do you give one at that place?" "What happens if you give one here?" You can show him on the diagram or on your face where you feel the most pulling or squeezing coming from. It's a bad idea to tell him what to do but with a few innocent questions, the teacher may come out in him. With questions and answers, communication has started and you are now playing a role in your own care.
After he injects you, you can ask if he modified or changed the sites in any way from what appears on the diagram and ask him to put in the unit amount of BOTOX that he gave at each site. Be gutsy!
Knowing the sites comes from experience and knowledge. You are new at this and probably will not be able to recommend changes. Start arming yourself with knowledge for the future and become an advocate for yourself. There are times that we do have to be at the "mercy" of doctors but I feel much better when I can be a partner in my own care.
Shirley in Arkansas whose eyes also just close or squeeze tightly shut but don't really spasm(or what I would call a spasm)
thanks for your response. as i've said i'm no longer
depressed or hysterical about all of this. i guess
it's become a part of my existence.
your help is so valued. thank you.
Re: hi delaine & shirley
Shirley said it very well. I've changed doctors several times for various reasons...because they didn't seem to listen, because they seemed insensitive, because they were so far away, and because they left the state. I now have a doctor in my small home town I like and usually I can drive myself to her office. If I can't drive, the Senior Citizens Van will take me for $1.00 because I'm on disability. Each time I change doctors I sign a form to have my records sent to the doctor I'm going to see and a copy for myself. THEY BELONG TO US and we have the right to copies of everything in the chart and so does the doctor who is going to treat us. The doctors usually have a sheet that is part of the progress notes with a picture of the eyes on it and it is marked with the place and amount of the injection at each site.