Blepharospasm Bulletin Board

Is this normal?
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Posted by: paulette
03/06/2004, 11:38:06


I don't know if my case is "normal" or if I need to seek more medical help. I have received two sessions of botox for my blepharospasm, first on Feb. 6 I got 26 shots. 10 days later got 16 more because the blinking did not stop. Now my doctor is talking surgery for both upper and lower lids saying drooping might be the reason I still blink. I am not buying his explaination, my eyes droop a little, but isn't this because of the botox and aging? I don't know what to believe and am wondering if anyone else has had a similar experience? I need to drive and deal with people for my job, and need some reassurance.



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Re: Is this normal?
Re: Is this normal? -- paulette Top of thread Archive
Posted by: PDB
03/06/2004, 12:09:31


First, the many people on this board can give excellent, more experienced advice than I can, but.....botox can take at least two weeks to have an effect, so redoing after 10 days sounds like extremem inexpreience or a special case. If this was your first time with it, then it sounds like it was done by someone with no Bleph/botox experience. Leaping directly from the first injections not working to surgery sounds extreme also. We'd all need to know more of the history of diganosis, length of time with the syptoms, etc to get more into replies I would guess.

Hang in there

Peter




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Re: Is this normal?
Re: Is this normal? -- paulette Top of thread Archive
Posted by: Nilda in Virginia
03/06/2004, 12:41:00


You absolutely don't go for surgery after two sessions with Botox. If your doctor is so eager to give up on you, you need to consider moving on to someone else who is willing to work with you. Finding the right injector, the right dosage and sites takes patience too. Contact the Foundation office and they can point you in the right direction. If you know who the District Director is for the area you live in, you can also contact him/her. We have the names of many doctors.

Hang in there.
Nilda




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Re: Is this normal?
Re: Re: Is this normal? -- Nilda in Virginia Top of thread Archive
Posted by: Ann Doyle
03/06/2004, 13:51:19


I would certainly get a second opinion by a Movement Disorder Specialist. Also Botox does not work for everyone and they usually try Botox 2. It has another name but I can't remember it. Ann Doyle



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Re: Is this normal?
Re: Re: Is this normal? -- Ann Doyle Top of thread Archive
Posted by: Shelley
03/06/2004, 14:40:24


Myobloc. I've had both.



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Re: Is this normal?
Re: Is this normal? -- paulette Top of thread Archive
Posted by: June in Toronto
03/06/2004, 17:37:42


Listen to the others that have posted - get a second opinion by a good movement disorder specialist who is experienced with blepharospasm. Keep a record of botox units and placement sites injected (you should ask for a picture of the face with sites noted). Then compare each day your results after the injections and the symptoms you experience. Discuss this with your new specialist in order to get the best placement and units of botox for you. No surgery. Keep us informed - we care.

June in Toronto (Canada)




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Re: Is this normal?
Re: Is this normal? -- paulette Top of thread Archive
Posted by: Kathleen
03/08/2004, 14:06:27


I would look at surgery as a last resort. Before getting an accurate diagnosis, I let an opthalamoplastic reconstructive surgeon talk me in to surgery - sounds sort of like the same reasoning your doctor is giving you. He felt that my blinking and inability to keep my eyes open was related to the "heaviness" of my upper lids. I had a ptosis repair, which did nothing for me but leave scars and now that the spasms are being treated with botox, I have barely enough lid left on one eye to cover the cornea. I would definitely get a second opinion and even a third if you still aren't comfortable. (The surgeon who did the ptosis repair was actually my second opinion, so sometimes two docs make the same misdiagnosis.)



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Re: Is this normal?
Re: Is this normal? -- paulette Top of thread Archive
Posted by: Linda Sue
03/08/2004, 17:29:50


I agree with the rest. I have never received a second set of injections just after 10 days from the first. It took my neurologist a year of every 3 month injections, to get the right dosage and sites of injection for maximum control. I also receive Botox in my arm, so he was increasing slowly for my BEB so as not to cause antibodies against the Botox.
Linda



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Re: Is this normal?
Re: Re: Is this normal? -- Linda Sue Top of thread Archive
Posted by: paulette
03/08/2004, 18:13:28


Thank you SO much for the feedback. It helped reassure me that I am doing the right thing. Doctors can be so intimidating at times. I really appreciate all the help and support.



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Re: Is this normal?
Re: Re: Is this normal? -- Linda Sue Top of thread Archive
Posted by: paulette
03/08/2004, 18:13:45


Thank you SO much for the feedback. It helped reassure me that I am doing the right thing. Doctors can be so intimidating at times. I really appreciate all the help and support.



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Re: Is this normal?
Re: Re: Is this normal? -- paulette Top of thread Archive
Posted by: Beth
03/08/2004, 20:08:50


My first injections resulted in ptosis. I went to see a different doctor who immediately diagnosed the problem and asked permission to call that doctor and advise her of correct placement. Second round was a miracle. Third not as effective. Am now on round 4 with increased dosage. This doctor listens and is very thorough. He noted he doesn't like to do botox less than 2 months apart. Sometimes we get so down and frustrated we think we'll try anything to get relielf. But, this is your life and you don't want to rush into anything that could have long term complications.



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