Posted by: Patti Miller ®
01/30/2003, 12:35:37
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Catherine, I was at my local herbal store last week and the owner mentioned something about her having botox in another form. I wasn't interested since I knew it was for cosmetic purposes. I will call her and find out more about it. It has been 7 weeks since my myectomy with Dr. Anderson and I am on the herbal program I shared a while back, the 'Nerve Control' and 'Mood Elevator'. I was beginning to spasm about a week and a half after surgery. So far, I'm not spasming. I'll continue the program and see what happens. I've not been able to even get on the BB because I've been so busy - to make matters worse, my 82 year old father fell this week a cracked his hip. So right now I'm in a situation where during the night when he calls out, I can hear and can't see and my mother can't hear (as well as me) and can see. Is that a combination or what? We are still able to laugh about it and continue to trust the Lord through this more trying time. Will try to get you some info soon. Patti in SC
--modified by Patti Miller at Thu, Jan 30, 2003, 12:37:06
Modified by at Thu, Jan 30, 2003, 12:37:07
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Posted by: Evelyn ®
01/30/2003, 23:21:21
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How about not seeing or hearing well?:) I hope things go more smoothly for you.
Evelyn
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Posted by: joyce whitt/NC ®
01/31/2003, 08:34:33
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Patti, I must have missed that post about the herbal program. Would you please post again or e-mail me with names of products.I had surgery with Dr. Anderson Jan 7th and my top lids are Ok, it is the pesty bottom lids that are causing my eyes to spasm. Joyce in NC
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Posted by: Sherrie Feltz ®
01/30/2003, 13:10:30
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I also saw the segment on the Today Show. I'm going to go to their MSNBC site and see what additional info. there is.
This is my first time at this site. I've had BEB for a year and a half and was actually diagnosed 2 1/2 months ago. I was told by many doctors that it was psychological. Dr. Susac in Winter Haven,FL finally put a name to it. My symptoms have progressed to the point of, if I want to see, I'm constantly holding my hand on my forehead and using the palm and pinkie to hold the eyelids open. I had 5 sets of Botox injections within 7 weeks and no help. I'm waiting on insurance authorization to go to Pensecola,FL to see Dr. Tatrenely for possible myectomy. Can anyone share their experience with a myectomy and what to expect after?
I get the "oh,do you have a headache?" from everyone,due to the way I hold the eyes open. Most of the time now I just say yes. I'm really hoping for some relief from this position. I'd love to be able to coach my daughter's softball team again and go and actually watch my son run track. Thanks for giving me a place to vent where others understand what we're going through.
Sherrie
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Posted by: June in Toronto ®
01/30/2003, 15:42:21
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Welcome to the beb bb, Sherrie. I'm sorry to hear that you have this dis-ease but you've come to the right place for caring and sharing. I'm sure those that those that have had the myectomy op. (mostly they seem to go to Dr. Anderson) will post back to you. Share with us whenever you care to.June in Toronto who has had beb and meige for 8 years now.
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Posted by: Virginia ®
01/30/2003, 17:15:51
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Welcome to the BB, Sherrie.Dr. Patrinely (I think that is who you are referring to) did a limited upper eyelid myectomy on me in November 2000 (hard to believe it was that long ago). You can borrow a video of the procedure performed by him from the BEBRF and watch if you want - I did. Botox was becoming less and less effective for me. I talked to some of his patients and decided to have him do it. He's great. He wasn't sure I was ready for surgery (unlike many surgeons, he doesn't recommend surgery unless it is clearly indicated), so I had him give me botox and then videotaped the results after 3 weeks and sent him the tape. It was pretty obvious then, so he did it. He is closely affiliated with the BEBRF and knows what he is doing. Unlike, Dr. A, Dr. Patrinely doesn't routinely do "cosmetic cleanup" during the surgery. I do have some minor volume deficits at the sides of my eyes, but they are more noticeable to me than to anyone else. If this concerns you, I'd suggest you talk to him about it. I have no regrets about the surgery - I'd do it again in a heartbeat. The botox worked better afterward and I have been much better than before. Don't expect miracles, though. Surgery is a treatment, not a cure, and Dr. P will emphasize that. If there is anything else you would like to discuss off the BB, feel free to email me. Virginia in AL
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Posted by: Ann Doyle ®
02/01/2003, 13:42:32
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What city is DR. P in Virginia? Ann Doyle
--modified by Ann Doyle at Sat, Feb 01, 2003, 13:43:23
Modified by at Sat, Feb 01, 2003, 13:43:24
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Posted by: Virginia ®
02/01/2003, 13:57:36
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Dr. Patrinely's practice is in Pensacola, Florida. He also has a satellite office in Destin, FL and commutes to Houston, TX. He used to live in Houston, but moved to Pensacola to raise his kids.
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Posted by: linda ostheimer ®
01/30/2003, 18:47:19
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Welcome to the board Sherrie. I do not post very often but I do read what everyone has to say and find it interesting. I had botox shots on Tuesday and it usually takes about 1 week before I get the best results I will get. I have good luck with botox and would like to know more about the cream if it does help the botox to last longer.
I hope you can get back to activities with your kids as I know that is very important and we tend to be frustratated if we can not do what we always have done. I have a daughter with MS and I know her frustration if she cannot participate in her families activities.
Linda in Indiana where it is cold and snowy, but beautiful
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Posted by: Sherrie Feltz ®
01/31/2003, 10:09:41
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Hello Linda in Indiana.....I have a sister, Linda, in Auburn,IN. I grew up there. When I was 24, I moved to warmer places and that was 24 yrs ago. Sometimes I wish I were back there.
The msnbc site was not helpful. When I go see Dr. Patrinely, I have it on my list to ask about this. If it was something that would be workable or do-able, I would think that one of our doctor's would have already recommended it as an in-between the injections thing. Does that make sense?Sherrie in 72 degree FL today
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Posted by: Carol A. Brown ®
01/31/2003, 16:34:22
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Hi Sherrie,Welcome to the BB. I don't post here often, but it is a great place to come for support. I had a myectomy surgery about 4 years ago. I am much better now as I can go longer between botox injections. My recovery period after the surgery was a little lengthy though, but I expect everyone is different. Before the surgery, I had problems holding my eyes open. They would clamp shut and wouldn't open for awhile. After the surgery, I did not have that problem. Just make certain you go to someone who is well qualified to do this. Keep us posted on how you're doing. Carol Brown, Naselle, WA This rain we're having is getting on the last nerve I have left.
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Posted by: MaryNY ®
01/30/2003, 16:22:19
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Catherine - I'm no wiz, but I do surf! So MUCH out there ! As far as I can tell, Botox Lotion is used only for cosmetic purposes. Too bad -- it sure would be great, right? Mary
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Posted by: Patti Miller ®
01/30/2003, 16:41:34
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I called the owner of our local health food store and got the info on the new product. Wrinkox creme is a cosmetic alternative to Botox. She said there is some concern about long term effects of Botox and is made by a well known and established company that just released it the end of Dec/early January of this year. It is 1/2 fluid oz. for $34.99 here in Greenville, the company has it on sale now for $29.99. It says to use daily around the eyes for 30 days before you expect to see results. It comes with a pump and spout. She said there is a possibility it might help to prolong the effects of Botox. But only those of us who take Botox for BEB will know if we decide to try it. She said all health food stores now carry it. Who is going to try it first? Patti in SC
--modified by Patti Miller at Thu, Jan 30, 2003, 16:45:02
Modified by at Thu, Jan 30, 2003, 16:45:02
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Posted by: catherine pender ®
01/30/2003, 17:26:58
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On the Today show I clearly saw a pump type bottle with the words botox witten on it. He also mentioned that it was available in Spain. I will look into it with the doctors here to see if anyone has heard of it. I will also check with the Dr who does the botox for cosmetics tooCatherine. Maybe we are on to something
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Posted by: Virginia ®
01/30/2003, 22:23:50
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I won't post a link, since this is from a commercial site, but for those who are interested, this is a list of the ingredients in Wrinkox.Water
Grape Seed Oil
Sunflower Oil
Glyceryl Stearate
Acetyl Hexapeptide-3
Cetearyl Glucoside
Caprylic Acid
Glycine
Glycerine
Xanthan Gum
Tocopherol
Rosemary Oleorsin
Lecithin
Fragrance
Methylparaben
Propylparaben I also looked at the MSNBC site and all they had was a "summary" of the book by the man (forgot his name) who was on there. Nothing about Botox or a botox-like product. I also ran across another site with a kit that is supposed to "enhance" the results of botox. It is just cleansers, lotions, etc. that presumably would keep your skin looking good while the botox does its thing on your wrinkles. Hope this somewhat satisfies somebody's curiosity. Virginia in AL
--modified by Virginia at Thu, Jan 30, 2003, 22:26:44
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Posted by: Lynn Yarbrough ®
01/30/2003, 22:41:37
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Allow me to repeat what I have said before in the forum: Botox, the commercial form of Botulinum A, is made from the second most deadly substance on earth (behind Plutonium). You play with it at terrible risk. I can't believe this salve version is anything but 100% "snake oil". We are fortunate to have carefully trained professionals, following carefully applied guidelines, to administer Botox to us on rare occasions. The idea of people self-applying anything nearly as dangerous as Botox is repugnant to me. Why not just get a gun and shoot yourself?I don't buy this whole story. I hope you all are extremely careful at assessing your risks. --- Lynn
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Posted by: dorothy long ®
01/31/2003, 10:57:13
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I don't see how a lotion could work when the botox is injected in the eye lid muscles. Probably a money making scam. Just my thoughts.
dorothy long from Pa.
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Posted by: denise mckew ®
01/31/2003, 15:16:40
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Hi Everyone,My mother called me about that Today show segment. She told me the product name was BotoxMax, and was suppose to extend the time between injections. Denise
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Posted by: Delaine Inman ®
01/31/2003, 20:17:17
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I don't know how they are getting away with using the term Botox in the name of the product unless Allergan is making the lotion. I feel 100% sure it contains no Botox either. They are just using the Botox word to attract attention of those who use Botox for cosmetic reasons to try to sell the product. Botulism toxin is very carefully regulated and WOULD NOT BE FOUND IN LOTIONS. It is very misleading but they can call it BotoxMax and claim it helps prolong the look that Botox gives to those who use it for wrinkles. Botox is a buzz word for those wanting to look younger by decreasing the appearance of wrinkles. So there will be all kinds of people trying to jump on the band wagon and sell a product.
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