Re: New Doctor
Hi Lyn, I live in Brisbane. Queensland, Australia (for info of all USA posters) and receive Botox injections for an eyelid muscle problem from a Neurologist my GP referred me too. I've had two treatments so far. I'm booked for a third on 4 August. My injections were in an arc just under the eyebrow. I'm replying specifically to your question re Cosmetic Surgeons treating BEB. My injections are done on a clinic basis. ie, a group of people a booked the same day for Botox treatments. However, I suspect I'm the only one without a cosmetic problem as the good Dr pointed out that everyone else pays about $A400.00 per eye, whereas mine, being a medical problem is billed to Medicare, or a part of it that handles expensive medicines. I only pay for the consultation and Medicare refunds about 60% of that. I haven't investigated claiming any thing on MBF at this stage. I have some symptoms of BEB but to date no Dr or Medico has put a name to it. It is a pest though and as I have spent some time looking at this site I thought I'd better put my name up so to speak.
Best of health to you.
Re: Welcome Terry
Hi Terry, Glad that you came out of the woodwork to say hi. Let me give you a hearty welcome to the bulletin board.
Does the botox work well for you?
It's good to have another Aussie on the bb. You could tell us a little about yourself if you'd like. How long have you had Blepharospasm?Shirley in AR.
Re: New Doctor
Hi Terry
Am very interested that you don't actually pay for the Botox. Do you go to a public hospital? I told my GP that over East some people don't pay for the actual Botox and he said it could only be at a public hospital, not at a private doctor.Just under the eye
brows doesn't seem the right spot. You'll find out more from this site than anywhere. For 10 years have been going to the same doctor thinking there was no alternative and now I've found there are !!!
Lyn
Re: New Doctor
Lyn,
For the last year I have been getting Botox injections from an ocular plastic and reconstructive surgeon. Many of his patients get Botox for cosmetic purposes. However, he is also very experienced in injecting for BEB - was recommended by the foundation. I would not ordinarily have taken this route, but was looking for a surgeon to do a limited myectomy and he wanted to try Botox on me a couple of times before he agreed that I needed the surgery. He's good at it, but then he does it a lot. I went to another one before this one and he wasn't as experienced and he only gave me botox once.
Virginia in AL, hoping it works out for you.
Re: New Doctor
Thanks, Virginia, I will just wait and see. He certainly seemed to be confident in his injecting - he has used it extensively in other areas I am told - it felt just the same. He spread it around a bit more - instead of 2 to each lid, he did 3 or 4.
Lyn
Re: New Doctor
Hello Lynn, You letter was very interesting, this is the first time I have heard of Botox being frozen.I had always heard that it came in a vial, mixed with a saline solution, used and any that was left had to be thrown away after a short time.What do you nurses know about this?I really learn a lot from this bulliten board.Keep posting, and let us know the results. I will get Botox next week from a new Dr., will let you all know how it goes.Edith
Re: New Doctor
Hi Edith, Good to hear from you.
I've heard the same thing about botox that you have mentioned. I'll see what I can find out from Allergan.
What type doctor is your new doctor going to be? What specialty? We'll be waiting on a report back from you about how it goes.Shirley in AR.
Botox
Edith:Botox arrives at the physician's office freeze-dried in a small vial of 100 units. It is reconstituted with saline before using. It cannot be refrozen and yes, must be used within a few hours or discarded. Many doctor's schedule a clinic (all of their Botox patients) on one day so that if the whole bottle is not used it can be shared with another patient. Most likely your charge does not reflect the unused amount. Judy
Re: New Doctor
Yes, Edith, it was VERY interesting to be handed a frozen syringe!!!I didn't know before I read Shirley's reply about re-constituting it etc. Will be waiting anxiously over the next few days to see what happens.
Lyn
Re: New Doctor
Lynn - I always get four around each eye and each lip, starting with my very first visit.
Shelley
Re:Freezing Botox
Hi Lyn,
The first doctor that I saw to receive Botox was an oculo-plastic surgeon. He saw a lot of BEB patients.
Dr. Richard Anderson, that did my upper myectomy, is also an oculo-plastic surgeon that sees lots of patients with BEB and does their Botox injections. He also injects lots of people for purely cosmetic reasons.The thing that concerned me was the fact that he handed you a frozen syringe of Botox. I have heard other people say this and I am curious as to how it will work. I copied the below information from the Allergan site on Botox
at in the prescribing information. It is about 3/4 of the way down.
I don't know what it does to Botox after you reconstitute it and then refreeze it. It comes in a frozen state originally (a powder) and has to be mixed very gently. The prescribing information says that once it is mixed with the preservative-free saline that any remaining toxin needs to be refrigerated and used within 4 hours or disposed of. I may contact them and ask what happens to it. www.botox.com BOTOX® is supplied in a single use vial. Because the product and diluent do not contain a preservative, once opened and reconstituted, store in a refrigerator and use within four hours. Discard any remaining solution. Do not freeze reconstituted BOTOX®. BOTOX® is to be reconstituted with sterile, non-preserved saline prior to intramuscular injection.
Shirley in AR.
Re: Contacts in US and Australia for botox
I have emailed them and will let you know what they have to say. Meanwhile, if you don't have the Australia contact-here it is.Shirley in AR.
United States 800-44-BOTOX
info@BOTOX.com
Algeria 43-1-713-775-177
Benkotic_Damir@allergan.com
Argentina 54 11 4630-8164
Szulga_Guillermo@allergan.com
Armenia 43-1-713-775-177
Benkotic_Damir@allergan.com
Australia 61-2-9978-0100
Islaub_Rick@allergan.com
--modified by Shirley-Arkansas-USA at Thu, Jun 14, 2001, 14:15:13
Re: Re:Freezing Botox
Hi Shirley
Yes, very interesting re frozen Botox! Can't wait to see what happens. If it is too awful I will just wear my dark glasses everywhere until it wears off. I really liked the doctor and hope it all works out. How is it re-consituted? Would the actual doctor do it just prior to injecting or what. I don't recall my previous doctor doing much - though he did fiddle with the syringe a bit. Does your doctor do anything before the injections? I just remembered my old doctor started swabbing the area prior to injecting and also giving me some drops. He only started the swabbing bit a year or so ago. The new doctor didn't do any of that. Thanks for the Australian contact for Botox, might be interesting to see what they have to say re costings.
Lyn
Re: Re:Freezing Botox
Hi Lyn,
I haven't heard back yet from Allergan regarding freezing botox once it has already been reconstituted. My question to them was how it was effected by doing this. As soon as I hear from them, I will post it.
My assumption (guessing here) would be that, if anything, it would render the botulinum less potent and it would not be as effective and possibly totally ineffective but I don't really know. It is very fragile and can't be shaken when it is mixed. Like Judy was saying, Botulinum toxin comes in a sterile vial as a vacuum-dried powder. Each vial contains 100 units of Botulinum toxin type A. The vacuum-dried powder must be stored in a freezer at or below -5 degrees C. It is reconstituted with sterile preservative-free normal saline. The normal saline is the diluent. The proper amount of diluent is drawn up in a syringe (this varies with the amount of volume to be used) and gently injected into the vial. The vacuum should actually draw the diluent gently into the vial. This is what is called reconstitution. I've heard doctors say that they don't allow the diluent to hit the powder, but allow the diluent to flow down the inside of the vial until it comes in contact with the powder, dissolving it. At this point, the botox should be administered within 4 hours and during this time stored in a refrigerator at 2-8 degrees C.
It appears to be very fragile and can be destroyed by bubbles or shaking violently. I think that most doctors do this process themselves but I also feel fairly certain that some allow nursing or other personnel to do this for them. I've had three different doctors inject me with botox. One did no skin preparation, what-so-ever (no alcohol wipe or anything). One wiped the area with alcohol swabs and one uses a numbing drop in the eye and then swabs the area with alcohol wipe. The numbing drop was just used so that the alcohol wouldn't burn if it got in the eye. So you see, doctors are all different. Some change needles with each eye or after several sites are injected and some don't change the needle at all. I've had it done all three ways and can't really tell a difference (and yes, I'm a wuss, and I don't like anybody messing around my eyes). Hope this has helped. I wouldn't be too concerned about having the botox work "too" well and who knows, it may work out fine. Allergan may just "not recommend" freezing the reconstituted Botox. Let us know how it goes. Shirley in AR.
Re: New Doctor
Hi Lyn, may I say how brave you were to allow a cosmetic doctor, who has never treated beb before, inject you. The fact that you had to instruct him in the units to give, etc, also makes me wonder. I pray that the results are good for you - but personally, I wouldn't have had them done (its easy to say I know) unless the doc. was much more familiar with the condition. Best wishes.June in Toronto - where today is 31degC
Re: New Doctor
Hi June lucky you at 31degC! I think I was too shellshocked to react much when I discovered I was his first Blepharospasm patient. He has used it extensively for other things, though. I have a funny feeling that it is all going to work out OK. Hope I still think that in about a week!
Lyn
Re: New Doctor
geez louise, lyn, what a hair-raising story! it's almost comic if it weren't so important that you get your botox. i certainly do hope your eyes don't do strange things.
Re: New Doctor
Yes, Kathy, it really was a funny situation. All this glitz and glamour, really lovely surroundings and here was this guy wondering where to inject the upper lids!!!! I didn't know whether to laugh or cry so I laughed. But he really did seem to understand the problem with the upper lids as he said he knew he had to avoid the muscles that lift the lids. Strangely enough, I really trusted him - he was so nice.
Lyn
Re: New Doctor
Lyn, I think you've got a great attitude and under similar circumstances, I very likely would have done exactly what you did. With the doctor being kind and you liking him. He knows the muscles in the face-he has to please those cosmetic patients, you know. He watched you to see where he might need to give the injections and he did know to stay away from the levator muscle so as not to cause a ptosis (it is also helpful to inject "away" from this muscle by pointing the needle in the opposite direction). If nothing else, he probably read the Botox literature on Blepharospasm which I feel a few more doctors would benefit from that feel that they already know it all.Sometimes you just have to follow your "gut". More doctors need to know about Blepharospasm and how to treat it and you had a very interested physician and you may just have gotten him started (however unintentional it might have been) in becoming very interested and very proficient at treating Blepharospasm patients. It may not be so strange that you trusted him. There was probably a good reason to.
It is in retrospect kind of funny and kind of scary and if you had known beforehand you might have run in the opposite direction. That is hindsight at this point. Just make the best of it. Shirley in AR.
Re: New Doctor
It's true that you have to be careful about the muscles in your eyelids. Once, he hit too close to the wrong muscle and my right eye was practically closed for, oh, a few weeks, I guess. That is one of the reasons we went to Myobloc - it doesn't "spread" as much as Botox A. Shelley
Re: New Doctor
i really hope your eye muscles react like they're supposed to.
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