Posted by: Claire from Canada ®
11/02/2003, 11:39:45
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Hi,This is entirely normal. You and your doctor have to work together to find a proper dosage and length of time between injections. It took me about 18 months of trial and error to get there. It is not perfect, but my current combination of injections, timings (and meds, in my case), works well enough. I live in Canada, and what complicates things, is that our medical system has lots of waiting time, and it is nearly impossible to get around it. I know that when I call for an appointment, it will not be for at least a month and maybe 2. This added another dimension to my stress and my quest to find something that works. At times, I needed injections and had to wait a month, that means a month of being nearly non-functional. That is behind me now since I know that every 6 weeks does the trick, and has for about one year. So, I just schedule my appointments every 6 weeks and I'm ok. Do not despair, you will find your own combination. Have a very nice day!! Claire
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Posted by: June in Toronto ®
11/03/2003, 07:40:12
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Hi Claire, I guess I'm luckier (in some ways) that I only have to wait 2 weeks for an appointment with the neuro for my botox injections - unless he has gone away on vacation of course. You seem to have come up with a good plan - booking your appointment every 6 weeks. I think in the U.S. the docs wouldn't inject that often - so we win some in Canada and we lose some:-) Best wishes.June in Toronto
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Posted by: Claire from Canada ®
11/03/2003, 11:40:24
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Hi June!There are pros and cons everywhere. Just to continue a little here on that US-Canada comparison... I am looking to get the partial myectomy done. I was referred (in Sept) to a doctor in Ottawa who can do this procedure, and I finally was advised last week of my appointment for Dec 22nd! If I am not comfortable with this doctor, I will go see Dr Anderson in Utah, who told me that as soon as I make my decision, he will have me up for surgery within the month!! I wonder what is the waiting like in Ottawa, if I opt for that... Of course, going to the US means I will pay for my surgery, but if the waiting list is 1-2 years in Ottawa, like it is for some other types of surgery, I just may go south!! More to follow. Claire from Canada, Aylmer
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Posted by: June in Toronto ®
11/03/2003, 15:51:34
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The doctor in Ottawa would be Dr.Jordan and, I udnerstand, he trained under Dr. Anderson. I have only heard very good things about Dr. Jordan, so I wish you the best of luck with him - even though you have to wait until Dec.22nd. Only in Canada eh?:-)June in Toronto where its a rainy day
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Posted by: Claire from Canada ®
11/05/2003, 19:25:32
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If you know anyone who had the surgery done from him, I would love some news from them!
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Posted by: catherine p ®
11/06/2003, 09:28:31
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Call his office. They won't give you the names but probably would give the people yours. Also a fellow who use to post Marcellin (I think has had surgery. June could probably fill you in on thatAlso you mention Alymer. Is that is ontario? Catherine
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Posted by: June in Toronto ®
11/06/2003, 09:41:28
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I was trying to think of his name - Marcellin C. from Nova Scotia - that's it. Anyway I have the Ottawa support group info for Claire if she e-mails me there may be others affiliated with that group who have had beb ops. They would know ALL about Dr. Jordan I'm sure.June in Toronto
Modified by June in Toronto at Thu, Nov 06, 2003, 09:45:41
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Posted by: Claire from Canada ®
11/08/2003, 20:20:39
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Aylmer, Quebec, right across the river from Ottawa. In fact, my husband and I both work in the beautiful capital city.Claire from Canada
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Posted by: June in Toronto ®
11/09/2003, 06:56:10
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I replied to your e-mail about the Ottawa Support Group - did you receive it as there are `network errors' even at 7.30 this beautiful Sunday morning? I'll send it again to you if you didn't get it? Let me know pleaseJune in Toronto who is frustrated this morning - when they work (the computers) they are great, but when they don't urr..........
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Posted by: June in Toronto ®
11/06/2003, 09:34:44
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Claire, perhaps you could e-mail me at:junefloyd@hotmail.com putting BB in the subject line. I have the e-mail addresses of the Ottawa support group (Dystonia) and you could contact them. I know one of their men had Dystonia (not beb) ops done by Dr. Jordan - he perhaps could advise you. June in Toronto
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Posted by: catherine p ®
11/08/2003, 23:15:07
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ClaireMy doctor here in Calgary trained under Dr Jordan. She has mention several times how skilled he was and she would have referred me to him had I been going to her in the first place. She even puts his on par or higher with Dr Anderson (not sure if she is biased or not ha ha. being Canadian and all. I hpe your wait is not too long. We opted to go to Salt Lake as I did not know about Dr Jordan at the time. We paid for everything and my husband claimed it all on his income tax. If you go there keep all your receipts even hotels, airline tickets and even food. Good Luck and keep us posted. You can e mail me at patandchat@shaw.ca if you need any further info Catherine in Calgary
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Posted by: catherine p ®
11/05/2003, 01:35:01
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ClaireAlymer Ontario? At is near where I was born Probably know some family My new doctor in Calgary has told me several times about Dr Jordan in Ottawa. She highly recommends him. If he is anything like Dr Ells in Calgary you will be luckly I will be moving back to Ontario next year but I hope I can find someone closer than Ottawa! We are moving to Collingwood. Good luck Keep us posted Catherine
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Posted by: Claire from Canada ®
11/05/2003, 19:24:23
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I have also heard good things about Dr Jordan. Thank you for your note!
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Posted by: Claire from Canada ®
11/15/2003, 09:40:38
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Sorry I didn't answer earlier, I thought I had.I live in Aylmer, Quebec, which is in the Ottawa region, right across the river. It is a wonderful town, we have been living here for over 2 years. My husband and I are both from Montreal (he from the suburbs and I from the city), we also lived in Québec City, and now it is Aylmer forever!!
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Posted by: June in Toronto ®
11/03/2003, 07:36:39
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Hi Jean, did the doctor inject in EXACTLY the same sites the second time as he/she did the 1st time? You should let the doctor know your results within 2 weeks of receiving injections. Perhaps you could get a booster set of injections (adding a few units to certain sites) and that could be done now. It all takes (sometimes) a long time for you and the doctor to get the best results. Have patience and good luck.June in Toronto
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