Re: botox not effective
call your doctor,rhonda and let him know. remember that it can take up to 3 weeks to fully work and the holidays are an especially stressful season for some and can interfere with the botox's effectiveness. i can't remember if you are taking any medications? that might help relax your eyes. check with your doctor on this also ; he might want to change or add something.
--modified by kathy at Thu, Dec 27, 2001, 04:26:50
Re: botox not effective
i did call my doctor and he said there is nothing he can
do and i should consider surgery.i;m almost blind right now. if the botox didn;t work can;t they try
another botox before the required time? please help me anyone. rhonda coutant
Re: botox not effective
Rhonda my Doctor told me if the botex didt work i would have to wait
the full 2 months before i could get anymore.Hang in there you might get some relief yet.My last shots lasted 9 days cant go for more until
the last of Jan.I am dealind with it pretty good.
Good Luck
Colleen in IL
Re: botox not effective
Before you investigate surgery, let's consider all the options. First, what town do you live in? Are there other Doctors in the area with BEB treatment experience? What medicines have you tried? How far must you go to a surgeon with BEB experience?--- Lynn
Re: botox not effective
colleen & lynn,thanks for your reply. i live in dallas. my husband tonight suggested i call my
doctor and see if he might try different injection sights
next time. he also suggested i get a referral and talk
to kelly saffell's doctor. i'm in the same boat as
colleen. my shots lasted about 10 days also. rhonda coutant
Re: botox not effective
I am so fortunate to have a good doctor that seems to listen to me and my suggestions. I, too am from Dallas and my doctor is at Southwest Medical. It never hurts to go to another doctor just thank God that now there is other doctors that give these injections. My doctor is in the opthamology field and I am very pleased. Please feel free to
e-mail me if you would like his name.
Carolyn Smith
Re: botox not effective
I agree with Lynn completely. Before jumping into surgery you owe it to yourself to do some investigating on your own. Try different doctors (I went to 3) and possibly try meds in low doses. I know Dr. Merritt sent a patient to another beb doctor to try botox before agreeing to perform surgery. He wanted to be sure she was a nonresponder and it wasn't just the way he injected her. I have received booster shots twice when mine didn't work (once after 4 weeks and once after 6). Unfortunately there is no "cure" for what we have, surgery included. The hardest thing for me to do was to modify my lifestyle to fit my disorder (and believe me I tried to modify my disorder to fit my lifestyle!) I would encourage you to give Dr. Merritt a try.
Re: botox not effective/rhonda
rhonda, lynn gave us a pretty detailed description of how to change the injection sites and maybe that will help. i gave it to my doctor as something to try with me, also.
Re: botox not effective
Dear RhondaSame thing happened to me. I had someone with me at all times couldn't do anything. My eyes were completely closed all day and meige was also taking over. My doctor gave me prednesone one week before surgery. I had a limited myectomy. I was pretty much 95% better for 1 month. I was so hopeful for a complete recovery, but I guess that is not to be with this disease. My doctor and I discussed what a big part the prednesone also took, but of course you cannot stay on that forever. But I took it for a month and it worked well. Maybe it could be a consideration for you also. Alas my eyes are closed again. Had 5 doses of Botox before surgery always non responsive. I have had another series 1 week ago and still waiting for a response. I know this probably won't help your situation but someone out there is definately sympathetic. Hang in there I am thinking of you.
Re: botox not effective
Rhonda there are some other things that might help? Do you wear glasses and do you have ptosis crutches? I also take ru-tuss the combination of which I could not function without. The botox lasts about 10 days with me every time but I "feel" better after having had it. Just suggestions from someone that reads this board occasionally but rarely writes. Kris in South Dakota where we have lovely big snow flakes falling.
Re: botox not effective/kris and rhonda
that's right. jaelline was talking about the eyelid taping. i wonder if this would help rhonda. rhonda, you put clear surgical tape on your upper eyelid( cut to fit). and the other end goes diagonally to the perimeter of the outer brow area.
kris, what's ru-tuss?
Re: botox not effective/kris and rhonda
I heard too many unsatisfied botox users last month. I wrote to the clinic and asked for the batch number and asked the others to do the same but no one replied except the clinic.
I wrote to the company for quality control and they talked about how they keep it frozen. I wanted to know the potency and if it varied.
I had to wait 3 months with closed eyes. I explained to my dr. and he wondered if we should switch to Botox B. We decided to try it one more time. It was perfect. Just like the very first time. Ann Doyle
Re: botox not effective
Rhonda,I had mine on Dec 4th and am very pleased with the results. This is first batch of injections from new doctor at Wills Eye and he did it differently. He used 65 batches total and the other had gotten me up to 66 after 50 the first batch. This new doctor used more in less sites with 13 sites. Five of these were above my nose between the eyes and brows. The other doctor had scheduled me for surgery and this pattern looks like my eyebrows have been lifted and is working much better. I guess what I what to say is that I only had 2 sets from the first doctor but was not pleased with the results or his lack of interest in this condition so I found one who sees more patients with this, has an interest in it enough to speak at support group meetings and had a pattern that worked better for me. I think half the battle (and that is what it seems to be at times) is to find the physician that is right for you. Of course, it could be the Botox dose or how it is handled before injections. This is like auto racing, there are so many factors to come out with a winner each time. Do you live near a teaching hospital or somewhere where the doctors see more patients with blepharospasm? I'll keep you in my prayers that it is just taking awhile and it will kick in really soon....Coleen in Central PA where it is getting colder and I am getting homesick for sunny California as I always do at this time of year.
Re: botox not effective
Coleen, Hope you and Tony had a nice Christmas. I am so pleased that you went to Wills Eye (is it clinic, or hospital?) and have gotten help without surgery at this time. I am really interested in understanding better what you said about the injections-- the number of units and the exact sites they were given. You say five sites were above the nose and between the eyes and brows. Were they in a straight line or staggered in that small area, and how many units were put in each site? If you had 13 sites in all, where were the other eight? Did you say that you had 65 units total?I am also interested in your doctor's name. Is he/she part of a group? Have you met George Carroll, regional director? Is Dr Savino at Wills Eye? If you would rather write to me email, that would be fine. I think you have my address. My last botox shots were in middle of November. They have been better this time than the last few times. Dr. increased dosage to 105 units total, and added one new sight just above inside of eyebrow on each side. The shots took more than three weeks to reach their peak, and they have been holding fairly well. They also have reduced the number of headaches from BEB. This is not to say I'm doing well, because I still cannot drive, ride, walk, converse, watch TV, read, work or lots of other things that make up one's life. I pretty much have to stay home, and do what I can in the short periods of respite, usually following a rest necessitated by medication. Each day is a struggle from beginning to end. I've been quite embarrassed at times in public and church when I get really bad spells of squeezing, and facial movement, and bad uncontrollable choking sensations and clearing of throat and breathing or "snorting". So my social life seems to be on hold. Tim in PA wishing you a Happy New Year. I'd love to be anywhere it is warm right now, too. Martha says hello, and glad you are getting some help.
Re: botox not effective/ tim
tim, lynn , a man on this bb has also had much success with changing his injection sites.
Re: botox not effective/rhonda
rhonda, in addition to changing your injection sites, in the current newsletter they are trying a variety of things with alternating uses of botox and myobloc for those who are finding the botox not working for them. there is an extensive article on this.
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