Re: Botox Injection Sites
Joanne, I get my injections in all the eye's outer corners, a couple across the upper and lower eyelids and 2 inbetween the eyebrows (the latter hurts the most because of the lack of fat there I guess). My injections work well, lasting about 4-5 months usually, but I do have about 3-4 weeks of bad side effects. Curious to see what others have to say. June in Toronto
Re: Botox Injection Sites
Joanne, as nearly as I can remember since I try to close my mind to the pain of some sites, my injections are outer and inner corners, upper and lower eyelids and one above the brow (which really hurts!) I believe there are five on each side.Sally
Re: Botox Injection Sites
Joanne,
Everybody will be injected a little differently, depending on where the spasms are originating or what muscles are effected.
I get mine as follows: one at each end of eyebrow (placed right above the brow line)total of four in this area.
An injection at both corners of upper lid area. total of four for these areas.
One about 3/4 inch away from the corner of my eye going toward the temple area. Another about 3/4 inch down on outer lower lid area. You could almost draw a straight line from the injection site on the outer brow line down through the site at the outer corner of my upper lid and then to the injection site on outer lower lid area.
I get an extra injection on the right side as my spasms are always much worse on that side. This one is placed In between two others, high on the cheek bone.
Total of 13 injections (100 units) My doctor has a computer diagram that he charts the injection sites and dosages on and I ask for a copy of it each time. He was a little surprised the first time that I asked him for it but immediately printed it out for me.
It is much easier to have a picture than to try to explain where the injections were placed and what dosage was given there.
Additionally, if you look at a picture of the eye and draw a line down the very center of each eye, all injections placed on the "nose side" of this line should be injected inwardly or toward the nose. All injections given on the "temple" or outer side of this line should be injected outwardly or towards the temple or ear area. Confused?
The reason for this is to help keep the botox from seeping into or around the levator muscle in the upper lid. This will decrease your chances of getting a ptosis dramatically. This doesn't really apply to injections in the lower lid as they do not have any effect on the levator muscle which is used to open your eyes. Shirley in AR. Who has learned that "technique" is very important.
Needle direction ...
Shirley and all:I agree that the way the needle is inserted/held is important, especially with the upper lid area. The first doctor that I went to did not inject the upper lids and it was not as effective, though I still have less than perfect results. Judy
Re: Botox Injection Sites
shirley, do you find that extra injection on your worst eye helps? i have a worst eye also and have not tried this. please reply.
Re: Botox Injection Sites
My doctor asked right off which was my worst eye and gives me more there. Yes, I think it makes a difference.
Virginia in AL
Re: Botox Injection Sites
Kathy,
It helps somewhat, but as I explained in another post, there is a muscle that runs directly across the middle of my upper lid, right on top of the levator muscle. In order to stop that spasm completely, that injection results in a ptosis. So, the eye is going to either be drooping closed from the ptosis or spasming closed. We opt for a unhappy middle of the road. I get an injection there and have a slight ptosis and the spasm in that particular muscle is lessened but is definitely still there. I can deal with this.
Everybody is different. Usually if you are having more problems with one eye than the other (as most people do) it is helpful to get more botox on that side either as more injections there or a larger dosage on that side. You and your doctor have to work this out according to your symptoms. But, it is the logical thing to do.Shirley in AR.
Re: Botox Injection Sites
thanks to you and virginia. i will mention it next time. have had horrible problems since the change in weather set in.
Re: Botox Injection Sites
Mine will be a little different because of the myectomy.Last visit I got a total of 13 injections, 60 units of Botox. On each eye I get one at the temple corner of my eye (largest dosage - 10 units) and one diagonally down and toward my cheek. Those are all on that side. On the nose side (of each eye)I get one on the inside of the brow, one slightly above the corner of the eye, one below and slightly toward center of eye, and one nearly at the corner, but really close to the bridge of my nose (not for eye, for nose). I get one other between and below my eyebrows, almost directly over my nose. I also get a copy of the injection sites and amount at each site. When I check out, I just ask for it and they make me one. As it turns out these are not much different from the old injection sites. I had been getting ptosis before, so he hadn't been injecting over my eyes anywhere near the center. The amounts at some sites are less now and the nose ones are new. Virginia in AL, finding it really hard to describe the locations - maybe we need to be able to draw pictures here.
Re: Botox Injection Sites
Virginia,
I have one muscle that goes directly across the levator muscle of my right eye that spasmm the very worst. This one causes most of my problems. In order to stop it from spasming the injection has to be placed in a location that causes me to have a ptosis in that eye. The last two times that I have gotten injections we have discussed it and compromised. I opted for a slight ptosis and slight relief of spasms in that muscle. It is just an unhappy middle of the road solution to a problem that can only be surgically corrected. I have to complement Dr.Perlmutter, though, on his ability to do almost exactly what we discuss and get the outcome that we decide on.
My first botox doctor just threw his hands up in the air and said that he didn't know what to do to help me as I wasn't responding like all of his other patients that he gave botox to. He gave everybody the same amount in the same locations and would not deviate from this.
Everybody got 50 units and you came in with a partner to split the vial. He did only charge for the cost to him for the botox.
His last suggestion to me was to double my dosage and see if that helped. Since, I had a severe ptosis everytime he gave me my injections, I figured that doubling the dosage would only serve to make side effects worse. I did not go back to him.
My dosage has been doubled since that time, but the side effects are much less and can only be attributed to the expertise of Dr.Perlmutter.Shirley in AR. where it is cloudy and windy
Re: Botox Injection Sites
My first doctor (a neuro-op) was a lot like yours - had his routine down pat. I got 40 units in the standard places. When I told him it just wasn't working, he suggested reducing the amount. I actually let him try it and got what I expected, results no better than before. I actually never did get ptosis when he gave me the injections except once when he varied from his routine and probably injected straight into the levator. He never did that again. He's the one who suggested surgery, only he wanted his partner to do it. I was way ahead of him by then and already had my surgeon picked out. He did split vials and only charge for what he used, though. He only gave botox one day a month, and that made it hard to schedule. One thing about using plastic surgeons to give botox is that they always have it and can give it without advance notice (but you do pay for the whole vial).Virginia in AL, cloudy and windy here, too, but warm - worked outside most of the day.
Re: Botox Injection Sites
Someone should post a page of difinitions for those of us who don't understand all this that you folk are going through. For instance wheat does ptosis mean?
Evelyn
Re: Botox Injection Sites
My Doctor gives me a total of 10 injections. I am at 40 units. I get them in the corners of my eye, inside and outside corner,under and above the eyelashes, and in between my eye brows and on each side of my nose, where the cheek starts. I have never had blurred vision. She gave me a black eye last time, but was trying so hard not to hit scar tissue, she hit a vein, and immediately told me so, and apologised. I have maybe 75% relief, with continued spasms with very little if any squeezing. However, I went 90 days this time to have injections because I've read many people say they had injections every 3-6 months. She said I needed to come in much sooner, and was not happy that she couldn't even give me an exam because neither one of us could pry the eye open long enough to look at it. It just really brought it home that we are all different, and what works for one will not work for another. I did have the levitor repair, brow lift, and blepharoplasty last June, but you wouldn't know it now. My eyes have gone back to the way they looked before because of the continued use of botox and it's side affects. I will not have additional surgery. I'm dealing with the fact that I have this, and have adjusted my life accordingly.
Re: Botox Injection Sites ( p.s.)
I did ask her if we could try a larger dose, as I thought that based on the postings and what other people are getting, that might be an option for improvement. However, she wants to give the lowest dose she can, because of the resulting ptosis (drooping eye lids.) She said she would give me 50 next time, because she already had my dose ready to go in the needles.I am being weaned off the klonopin, and that med. was replaced by Remeron, which I take at bedtime. It has greatly improved my sleep, as well as helping with anxiety and depression. I am also on Artane which is THE drug most prescribed for movement disorders.
Re: Botox Injection Sites ( p.s.)
Thanks Joanne, for explaining what ptosis is.
Evelyn
Re: Botox Injection Sites
joanne, are you saying these operations did not help you at all, or did they only for a short time? would you not recommend them to us?
Re: Botox Injection Sites
Kathy, the botox injections help me somewhat and I definitely recommend them--I posed the questions regarding the injection sites so I could get an idea where other blefros are getting injected so I am able to talk to the neurologist about getting better results for myself. There are no
set rules regarding this--it's an art of sorts and the doctor usually
makes some adjustments til optimum results are obtained. Hope this helps. Stay on the board and you'll learn more about all this. Joanne M. San Diego, CA
Re: Botox Injection Sites
Kathy, I can not make any recommendations to you regarding surgery. I have made the decision for myself not to have any surgery in the near future. This was after I had done my research, and was able to meet people face to face, who had the surgery. I was able to get my questions answered. If you have that kind of surgery and still experience spasms, and still need botox, what is the sense in it? However, all people don't think that way, and I have to understand that 10 years from now, I may think entirely differently, as I've only had BEB symptoms for about 2 years. My surgery made me look better, it did nothing for my symptoms. It's been 8 months since my surgery, and I am almost back to where I started in terms of my eyelid droop. One of the reasons for this is that I occasionally develop edema (the retention of water) and one of the places that I retain water is in my eyelids. Strange, huh?
Re: Botox Injection Sites
Joanne, did you have edema in the eyelids prior to your surgery also?
Christel
Re: Botox Injection Sites
Christel, no I did not. Edema usually shows itself in your feet and lower leg, as gravity has an effect on where it settles. I had edema once previously, and that was about 6 years ago, when I went on vacation and forgot to take my blood pressure meds with me. Now, I've had edema twice in my eyelids. The first time I got it right after I taped my eyelids up with surgical tape (before surgery), and I was sure that that contributed to the problem. However, I have not taped my eyelids since then, so was a little surprized when it happened again. In fact, I gained 20 lbs, in water weight over a 2 month period. I started diuetics 2 weeks ago, and have already lost 13 pounds.
Re: Botox Injection Sites
Joanne, thanks for the answer. So you didn't just have the edema in your eyelids, certainly not 20 pounds. That is a lot of water retention and I'm glad you're losing it so fast, bet you feel a lot better physically.
Christel who has to login everytime I come to the bulletin board, wonder why???
Re: Botox Injection Sites
doesn't everybody have to log in every time? i sure do.
Re: Botox Injection Sites
Kathy, If I stay off for any length of time, I have to log back on. Usually, if I am on the bb everyday, I do not have to log on.
Re: Botox Injection Sites
good, it's at least nice to know why.
Botox and surgery
Most people who have a myectomy do have to have supplemental botox. But usually they need less, and often it works better after the surgery. Some of the research results presented at the conference made we wary of botox and I decided that if the surgery could help reduce the amount of botox that I got, then that was a plus in favor of the surgery. Of course, we all have to make our own decisions about things like that because we're the ones that have to live with those decisions.
Virginia in AL
Re: Botox Injection Sites
I have been thinking long and hard about surgery. I would need my eyelids done and a brow lift even if I didn't have blepharospasm. "Today" my decision is to have my eyelids done and a brow lift like someone who does not have blepharospasm. No sense in having the muscle removed if I still have to get the botox shots. But who knows what my decision will be tomorrow.Thank you to everyone whom has had these surgeries and shared their stories.
Re: Botox Injection Sites
I had what you're having, and as long as he was in there and insurance covered it, he did tighten up the levitor muscles, which is the muscle used to open your eye. It had lost it's pull, so to speak, because of BEB.
Re: Botox Injection Sites
no i haven't had any surgery for drooping eyelids yet, but i do remember him mentioning to me that i might eventually need it and that it was quite common in thise of us with BEB, because of the interference with vision. thanks for answering. i guess i'm not at that point yet, luckily.
Re: Botox Injection Sites
Kathy,
I also think that it is important to say that the type surgery that Joanne J. had was more cosmetic in nature. I believe (correct me if I am wrong, Joanne) that she did not have an upper or lower myectomy done where they remove the spasming muscles. I believe that she had a levator repair or abduction to help get her eyes to open easier.
But with none of the squeezing muscles removed, that problem still exists. The spasms will cause the effects of the cosmetic surgery to soon disappear as things stretch and continue to pull.Everyone has to make their own decisions about what to do and what not to do. We all take separate paths to get to places. Different surgeons also recommend different procedures be done. We have to go with our gut and whatever doctor we choose to put our faith in. Some will have good results and others not so good.
It is just important to do your homework and weigh all your options and try to go with the most experienced people that you can find. And ask lots of questions.
What one person chooses or decides to do might be totally different from another person. Shirley in AR.
Re: Botox Injection Sites
I want to make it clear that this was not cosmetic surgery, and my insurance covered it. They would not have covered cosmetic surgery. The Doctor had to provide the insurance with the results of a vision field test and photographs, which showed that my eyebrow and eyelids were drooping enough to make my vision impaired. I had to hold my head back in order to see.
Re: Botox Injection Sites
Sorry Joanne, I used the wrong terminology. I know that it was surgery that was medically necessary as your vision was impaired. The point that I was trying to get across was and is that you had the medically necessary corrections made to the excess lid tissue and droopy brow and the levator repair done. You and your doctor chose not to address the BEB problem itself and by that I only mean that no muscle was removed to eliminate any squeezing or spasms. If I remember correctly, you and your doctor were hopeful that this would improve your symptoms and your ability to open your eyes. You are now saying that you are back to where you were before the surgery. In my opinion, this is due to the continued spasms and squeezing of the muscles in the area which has caused pulling and stretching of the skin and tissue around the eyes. I definitely could be wrong and I am not trying to be critical or judgemental. There are just different types of surgery. I think that a lot of people out there do not know or understand all the different types of surgery and what they do and what they are for. I believe that it is very important that people know exactly what their surgeon is going to do and what the supposed results or outcome will be, both for short and long term.
They need to know what they can expect 6 months from now and 2 years from now with the procedures that they are having done.This is the reason that in the past when I have asked for surgery updates and results, I have also asked for people to be specific about what surgical procedure or procedures they had done. It makes a difference in the results that are obtained. No offense is intended in any of this. We are just all trying to learn and share experiences. Shirley in AR. Thinking I may need to go take a dunking in Alan's pool.
Re: Botox Injection Sites
shirley, i thought that you were going to have surgery. have you yet?
Re: Botox Injection Sites
Kathy, No, I haven't had any surgery yet. I go back to see my MDS on March 7th and will talk to him again about it and get him to write me a letter for my insurance. He wanted to see me again and give me a larger dose of botox to see if that would work. I can't see how that will help the apraxia, though, which is the main problem. If I have surgery, Dr. Anderson will be doing it. I'll let everyone know, when I know.
It has been 7 weeks now since my botox and things are definitely going downhill, so probably won't be posting as much for awhile. Everyone will have a reprieve from my "mouthing off". So just enjoy it while you can.Shirley in AR.
--modified by Shirley-Arkansas-USA at Thu, Feb 15, 2001, 17:11:49
Re: Botox Injection Sites
Shirley, I, for one, will miss you if you're gone from the bb. I enjoy your humor and knowledge.
Evelyn
Re: Don't go away
Don't think for a second that your "mouthing off" won't be sorely missed. The silence could be painfully deafening! lol! I have nicknamed you one of the "Information Queens". Now there's a reputation to continue!Hugs,
Your Puddin' Head!
Re: Not actually going away
Thanks Evelyn and Shanasy,
I'll still be here, but I won't be posting as much. Simply can't right now. Things will eventually get better. Thanks for the kind words.
Re: HANG IN THERE SHIRLEY
Better days MUST be ahead Shirley - be good to yourself. June in Toronto
Re: Botox Injection Sites
shirley, 7 -8 weeks is the longest period i've ever been able to go between injections. How long do yours usually last?
Re: Botox Injection Sites
Kathy, They usually last 6-8 weeks. I can start to tell that things are getting worse at 6 weeks and by 8 weeks, things are pretty bad with slight reprieves through the day. My doctor is out of the country, though and I have his earliest available appointment which will be at 10 weeks.
Re: Botox Injection Sites
right, it makes sense that those muscles would be weakened. as i said i'm not there yet, but just wondering how long it lasts.
Re: Botox Injection Sites
Joanne, I've had the injections where you say you have them with some in my upper lids (along the very edge) & sometimes just below the lower lid, close to the outer corner. I have never had any blurred or double vision or really no side effects except the burning & I think the botox tends to dry your eyes for while right after you receive it. An opthamologist gives me mine & he's wonderful. I've had these now for over a year & only once did I get a little discoloration. Good Luck!
Doris--Ks (had an ice storm last night)
Re: Botox Injection Sites
Thank you all for your responses--I think I have a bit better handle
as to where you all are receiving injections--I do realize everyone's
disorder is different so there is no set rule or procedure....My next
90 day appt is end of this month so I'll see how it goes...I find it
kind of interesting that as the botox is wearing off, my breathing is
just a bit less troublesome--that part is very disturbing to me since
I do hope the botox is not somehow escalating the breathing difficulty.
I'll only know that based on what happens after the next round of
botox!! Boy, the challenge of this all!!!Thanks again, very much....
Joanne M. San Diego, CA.
Re: Botox Injection Sites
Dear Friends, I have just finished reading about your injection sites, and it does seem like we are all different, amount we get, different sites and reactions. 1 momth ago I recevied, 4 injections, 1 0ne outside corner, 3 more just under the brow and spaced toward the nose, 20 units in all, had bad ptosis, for 2 weeks, all most normal now, some blurred vision, still not as good as I would like it. A little balance problem for a few days. I believe I am sensitive to botox, and will try 15 units next time. I believe it is systemic and can cause other problems in the body. I know to most of you 20 units is nothing.I always have been light sensitive, I am 71 and have had BEB for 5 years, mild hemi-facial.Edith in Fl.
Re: Botox Injection Sites
Hi Edith,
Do you have symptoms involving just one side of your face or both sides? Do you get the botox around both eyes or just the one?
The ptosis that you are getting may be due to the technique that the doctor is using or where he is placing the injections. If they are given too close to the center of the upper lid or pointed in that direction, a ptosis (or droopy lid) may result, lasting for varying lengths of time. The center of the upper lid is where the levator muscle is located and if botox gets in this area, you get a droopy lid as the botox causes that muscle to not work and then you can't get that eye open. It will just droop and hang at half mast. What kind of doctor do you see?
Sometimes after I get botox, I'll feel feverish and kind of achy for a couple of days. Botox is known to do this to some people.If you get a ptosis real often when you get your injections, you could print out my post above and Judy's and take them with you to the doctor's office and ask him about it. It was suggested to me by Dr.Joel Perlmutter in St.Louis who is a movement disorder specialist. He is very active in research and teaching at Barnes Jewish Hospital. Shirley in AR. where it is now windy and cold. Getting down in the 20's tonight.
Re: Botox Injection Sites
Hello Shirley, in Ark.Yes just the left side of my face is involved.I see an opthalmologist, thank you for the suggestion. I have printed out your letter.Edith in Fl . where our low will be about 60 tonight, send us some rain down this way, we are getting in bad shape over most of the state.
Re: Hemifacial Site
Hi Edith,
Have you visited the hemifacial site? I'll post a link to it that you can just click on and it will take you there if you don't know about it yet. Good luck to you. Let us know how you are doing and if we can help you in any way. Ask whatever you like.Shirley in AR. http://hemifacialspasm.org/cof/index.shtml
--modified by Shirley-Arkansas-USA at Sat, Feb 10, 2001, 19:01:53
Original Message
Re: ptosis
Thanks Virginia. Joanne posted the definition, so now I know what everyone is talking about.
Evelyn
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