I've seen 3 doctors and all 3 injected completely different sites. Merritt's have been the best of the 3 for me but I have meige as well so I spasm from my forehead to my throat. If you only spasm in the eyes then different sites may be better for you. Last time I saw Dr Merritt we talked about Dr Anderson and he knows him. I would take the sites from the video and ask him to give it a try. He changed my sites after the conference last year because they were recommended but they didn't work as well for me.
--modified by Kelly Saffell at Fri, Mar 15, 2002, 08:54:16
At my last visit, my neuro told me that in the U.K. they use completely different injections sites as well. I guess we just have to figure out what works best for us and use that.
June in Toronto (beb/meige)
One important thing I've learned is that a good doctor does not use one site fits all. A good doctor will sit and look at you spasm, feel muscles around your forehead, eyes and face, asks you if you have specific sites that do and don't work and asks you at what doseage does the Botox start causing you side effects which you hate (like eyes too dry or mouth too dry) and what is the dosage that has helped the most? Asks if you get ptosis often and what other side effects you have had with Botox (like flu symptoms, twitching below injection sites, etc.) I have found as others have, that often when the dose isn't working, upping the dosage isn't the solution, it is finding the right sites at the lowest dosage possible and that takes an open-minded and patient doctor. If you don't have one of these, change doctors. If that is not an option try changing your doctor's attitude.....in a kind, but assertive way. If your doctor is not active or familiar with the BEBRF, send in $15 and get your doctor on the BEB mailing list. Ask if they use non preservative saline to mix the Botox, ask if they refreeze left over Botox in case you need more later (they shouldn't), what size needles they use and if they will prescribe EMLA or some other topical anesthetic cream that you can apply at least 2 hours prior to your injections. Call the office in 2 weeks and tell the doctor how you are doing. If you have had no relief ask about the lot # and see if they keep records of lot # and ask that it be repeated at no charge if it hasn't worked at all. Tell them to call Allergan and ask for replacement Botox. Keep a diagram of where the shots were given and ask how much you got. Keep a daily log of how your eyes are doing and what other symptoms you may be having. Ask if have brochures from the BEBRF to give their patients. Tell them they are free and give them one with the info to contact the foundation and get them. Ask if there is a support group in your area. If there is, ask if they tell their patients and encourage their patients to go. Print this and use it as a checklist if you can't remember this long list of stuff to ask or know. Stand up for yourself. You deserve the best care possible. Don't settle for less. You'll feel better and you'll have a better doctor.
--modified by Delaine Inman at Fri, Mar 15, 2002, 18:44:15
--modified by Delaine Inman at Fri, Mar 15, 2002, 18:55:27
I placed your newspaper article in my file to share with not only my doctors; family,too. Thanks.
Oh, how true you speak today. In my 10th year of BEB, it's been necessaary to walk away from a couple of M.D.s who were suppose to have good credentials...now it is making better sense to encourage them. The neuro just got back from vacationing in the Netherlands where the food was wonderful....Know about any bebfrs there? I asked. Nooo-o.
Should the pain in my neck be considered the progressive phase of BEB (cervital (sp) dystonia) and what should I expect down the road... for someone like me expecting to celebrate my 76th...
Kitty in SC where the Camellias are in their crowning glory.