Hi there! Have a few questions for everyone


Posted by hilltops , Aug 30,2001,12:43   Archive
Hello all,

Usually I'm over at the regular Dystonia board. Have had tardive dystonia for almost 5 yrs and it is progressing. The blephs are such a problem as all of you well know. It just kills me that I can't read my books anymore...used to devour them, at least 6 or 7 a month. But do try to look on the bright side and listen to books on tape, etc.

Being blind is something I never thought would happen to me. My doctor said that when I want he will send me to a special opth. to do the injections. Here goes...

I'm afraid of shots. Also there have been many folks who have had them and are worse off than before. I'm afraid of how much it costs...how often to do them, just afraid of it all! Always, in the past I've said there is no way that I'll do it...but not being able to see is tough.

Thanks to you all for any help you can give me.

Blessings,
Donna (in OK)




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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Lynn Yarbrough , Aug 30,2001,13:36 Top of Thread Archive
>I'm afraid of shots. Also there have been many folks who have had them and are worse off than before. I'm afraid of how much it costs...how often to do them, just afraid of it all! Always, in the past I've said there is no way that I'll do it...but not being able to see is tough.<

You are not alone in your fears. I had needle phobia during most of my life, used to pass out in the dentist's chair. And the cost ... if you don't have medical insurance it's hard to scrape up the minimum $392 per vial of Botox, plus whatever the Dr. charges for his skills. Yes, the shots are painful for a very short time, but there are things you can take to alleviate that pain, and even though some people have poor-to-lousy results from Botox, it is still the treatment of choice for the majority of Blephros and can be VERY effective.

My guess is that the fear of pain is what's holding you back. Let me assure you that the pain goes away within seconds, and by the time you leave the office you will no longer feel it. You may remember how it felt, but you won't actually feel it anymore. During the shots you may feel like bopping your Dr. on the head, because working around your eyes awakens every defense mechanism in your body, but if you can refrain from injuring him or her, all will be well. :-)

--- Lynn




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Re: Hi there! Have a few questions for everyone

Re : Re: Hi there! Have a few questions for everyone --- Lynn Yarbrough
Posted by kathy , Sep 01,2001,07:10 Top of Thread Archive
very well put lynn. ditto on the needle phobia for me. also pain killers can alleviate the pain on injection day to make it far less stressful.



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Kelly Saffell , Aug 30,2001,13:59 Top of Thread Archive
I certainly understand your fear of the "unknown." I have been receiving botox for over 5 years, since I was 27. I won't lie to you, it doesn't feel good but different people seem to have different responses to the pain. I have seen 3 doctors and the first set hurt sooo bad. My current doctor is awesome and the pain is minimal comparatively. And Lyn is right, it is short lived. I receive 20 injections every 8 weeks. Although I had to quit my job as a cpa, with botox I can now care for my daughters (6 and 3). I was like you in the reading department and still can't do that but I can read for 15 minutes or so and do listen to books on tape. I would recommend that you give botox a try. For alot of people it has made life bearable again and it could help you. BEBRF can give you a list of treating doctors in your area-that is how I found mine.

Kelly in Dallas




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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Sally - in - Idaho , Aug 30,2001,18:51 Top of Thread Archive
Hi Donna ... Welcome to this side of the fence. I have "read" you often on the Dystonia BB.

Shots: they hurt BRIEFLY, but it is over with so quickly. I am usually only in the exam room about fifteen minutes, and that includes the time the doctor is asking me questions about the last results and the time it takes him to go after the vial, and to open it and fire up his syringe. There are two sites around each eye that really hurt and, as Lynn so aptly put it, I'd like to bop the doctor. But I just clench my fists and bite the bullet.

I've been having the injections every eight weeks for two years and they do help, but certainly not cure.

Reading: (Also the love of my life and I was heartbroken when I became unable to read more than large headlines.) I won't promise anything, but ... after a little over a year of having the regular Botox injections, last Christmas I suddenly noticed that I could actually read words, paragraphs, pages again. Nothing like I used to devour, but I could hold a book and decipher it slowly. This was a real answer to prayer, plus I think that the doctor finally got the dosage and sites correct for me and that helped. There are times when it is still very difficult for me to read, but hang on ... there is hope there!!!

Sally in North Idaho




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Re: Reading again and Sally

Re : Re: Hi there! Have a few questions for everyone --- Sally - in - Idaho
Posted by Mindy , Aug 30,2001,19:25 Top of Thread Archive
Sally,
I'm so happy to hear this. I know how much you love to read.
I remember how I felt when I couldn't read, And I remember how it felt when I could read again. I still have the problem of reading out loud.
Don't ever give up hope.
Mindy in NY



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Ann Doyle , Aug 30,2001,19:17 Top of Thread Archive
Donna, maybe you will be one of the lucky ones like me. My eyes
had been closed for months and I just sat on a chair. TV doesn't
make sense if you can't see what is going on and radio is mostly
music. I couldn't do anything and became very depressed.
I had my first Botox and the next day I was normal for 8 weeks.
I only felt one of the shots and it was like a bee sting that lasted
only seconds. I really didn't feel the others at all but if I had,
it would be worth it to see for 8 weeks and have my life back.
Before the ones who aren't as lucky tear my hair out; I was due
for a break. I was first diagnosed with hemifacial spasm and had
MVD (brain surgery--very painful and very sick to my stomach). I
was spasm free for 2 days. It's a rare thing to have that surgery
and not be spasm free so it was a big disappointment. Ann D.



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Shirley-Arkansas-USA , Aug 30,2001,19:55 Top of Thread Archive
Hi Donna,
I know you from the dystonia bb, also, which I read when I can but don't usually post there. I also don't like needles or getting injections especially around my eyes. It was very scary for me the first time I got botox. To my surprise, it wasn't as bad as I thought that it would be.

If you haven't heard of EMLA cream, you might want to check into getting some of it for when you do get your injections. It is a prescription topical numbing cream. It needs to be applied about 2 hours before your injections and about every 15 minutes. You would need to know where you would be getting the injections, though, first.
The doctors nurse might apply it for you if you went in early to have it done. You would just need to talk with them and see what could be worked out for the first time. Some people have taken Tylenol or Tylenol with codeine or a mild tranquilizer before their injections. Most, I feel, don't need to take anything. The discomfort is very short-lived so a little gritting of the teeth is sometimes in order.
Everyone is different though and sometimes the injections are very easy and sometimes they are very uncomfortable. I wish you well. Most of us can relate to your fear as most of us have been there.

Shirley in AR.




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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by kerry horton , Aug 30,2001,20:26 Top of Thread Archive
Hi Donna:
I went with my Mom for her first Botox shots. It was a really strange experience - I'm pretty sure it was one you could only have in New York City. We went to Dr. Bozniak who was one of the first doctors to do the trials on Botox in the 80's, and he was recommended by the BEBRF, so we were hopeful that he knew what he was doing. When we called for an appointment the secretary said his office was in the same building as the Equinox Spa. We said, "really???" (I was thinking, maybe I could get a massage while Mom got her shots :)
It turned out that he does, indeed, give his Botox Shots in one of the treatment rooms of the Spa - right next to where someone is getting a facial or massage. I contained myself, skipped the massage and actually went in with Mom for her shots. Dr. Bosniak was kind, friendly, very knowledgeable about BEB and most importantly - very gentle. Mom just went back for her second set of shots and we are hoping that they'll "kick in" soon. If you decide to "go for it" I hope you find such a caring Doctor.
It is a really scary thing to do the first time. But you know what they say, "It ain't brave - if your not scared."
No matter what you do, I hope you can come to a decision that you are at peace with.
Kerry Horton in CT



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Delaine Inman , Aug 30,2001,22:11 Top of Thread Archive
Hi Donna. I understand your sadness over not being able to read books. I listen to them on tape and it helps. I also can read sometimes for awhile on a good day and take advantage of that. I do the EMLA cream the way Shirley described and it reallllllllllllllyyyyyyyyyyy helps me. I took Botox 2 times without anyone even offering it to me and then when they did they didn't put it on soon enough and I had tears running down my face the first few times. I learned the correct way to use EMLA from the BB and then educated my doctor and ever other doc I meet that gives Botox when they speak at our support group. I ask for a prescription so I can put it on myself at least 2 hours before my appointment and keep applying it until I get the Botox. I ask what size needle they use and if they change needles after drawing up the Botox. I also ask if it is mixed with saline without a preservative....learned that here too. It is more painful and less effective with preservative. Also instead of clinching my teeth and squeezing my fists or any other muscles, I consciously try to take deep breaths from the abdomen to relax my body. That is what works for me. Don't be afraid to be a pain in the butt to keep from having unnecessary pain around your eyes getting Botox. Do whatever it takes. Everyone is different. Good luck.

Delaine from TN where we are having a break in the heat. I can't believe it is almost Sept. Where did summer go?




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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Virginia , Aug 30,2001,23:22 Top of Thread Archive
There's not much I can add to what the others posted, but I definitely agree with Delaine that it is better to be relaxed, than gritting your teeth. I try to remember the breathing exercizes I did for childbirth and I have no trouble with the injections. Even if there is a little discomfort, it is over quickly (so was childbirth for me, I was lucky). For some reason, if I can't see the needle, it doesn't bother me and the injections are given with my eyes shut. They seem easier when I'm lying down, instead of sitting in a chair. It think it's easier for me to relax that way.

Cost varies a lot, but insurance companies usually cover it. How often depends on you - 8 to 12 weeks is pretty normal for most of us on the BB, though some go longer.

Reading has not ever been a real problem for me. Long before I was diagnosed, I was holding one eye open to read (I can be pretty determined). As long as I lie down, my eyes usually behave, so I do most of my reading stretched out on the couch.

Good luck and let us know how it goes for you.

Virginia in AL, going for botox tomorrow




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Re: Hi there! Have a few questions for everyone

Re : Re: Hi there! Have a few questions for everyone --- Virginia
Posted by hilltops , Aug 31,2001,12:59 Top of Thread Archive
Hello friends,

My goodness! Don't know how to thank all of you for your advice...already wrote down the name of the cream in case I do decide to go for it. I guess it justs depends from person to person how often you have to go in for them, huh?

Blessings,
Donna

PS Hi to all who remembered me from before! My memory has gone to h*ll in a handbasket!




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Re: Injections lying down or sitting up

Re : Re: Hi there! Have a few questions for everyone --- Virginia
Posted by Mindy , Aug 31,2001,14:05 Top of Thread Archive
I also used the breathing to relax and only felt my injections as a slight pinch. I asumed everyone got their injections lying down.
I'm wondering if the people who have problems with pain or botox running,causing ptsos is because the sit in a chair.
Does anyone sit in a chair?
Mindy in NY



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Joanne Matuzas , Aug 31,2001,14:13 Top of Thread Archive
Mindy, I always sit in a chair but not that I have an appt. next week
with a different doctor it may change. Joanne M. San Diego, CA



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Shirley-Arkansas-USA , Aug 31,2001,15:20 Top of Thread Archive
Hi Mindy,
I have had injections reclining, lying down and lastly sitting up. Since my surgery, Dr. Perlmutter has had me sit up for the injections. I asked him why the change and he replied that since he didn't have to inject my upper lids anymore that he could do it just as easily or easier with me sitting up. He said that he had me to lie down before as he needed me to be very still when he did my upper lids. I've seen no difference in the botox with the change in positions only with the doctors and their injection techniques.
It was interesting to hear at the conference that most of the doctors that were on the question and answer panels rarely gave their patients a ptosis. They could have been doing a little bragging but I really think that they for the most part were serious and I do believe that a ptosis is basically technique related.
I also think that relaxing and deep breathing for the injections does help. My comment about gritting ones teeth was probably not the best thing to say as I didn't mean it literally and it could easily be taken that way. I meant it more as a "grin and bear it" type thing. Now, I think that I am confusing myself. Laughing while you get injections is out as I learned from experience (thank you again, Virginia) but relaxing is the thing to do.

Shirley in AR.




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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Shirley-Arkansas-USA
Posted by Virginia , Aug 31,2001,20:03 Top of Thread Archive
Since you brought it up, I just thought I'd pass along that Dr. Kline now uses 32-gauge needles, too. Apparently he doesn't feel the same way Dr. Perlmutter does. He said his patients have noticed a difference.

I have my injections sitting now, but it's easier to relax with my head and neck resting flat.

Virginia in AL, only gone for half a day and y'all filled up a whole page.

--modified by Virginia at Fri, Aug 31, 2001, 20:07:51




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Re: 32 gauge versus 30 gauge

Re : Re: Injections lying down or sitting up --- Virginia
Posted by Shirley-Arkansas-USA , Aug 31,2001,20:09 Top of Thread Archive
I shall have to discuss this with him on my next botox trip-but it won't be while I'm getting the injections this time. I learn some things very quickly. How is it that you get to see all the docs that use 32 gauge needles instead of 30?

Hey, is Carl jealous of all the attention that Roy is getting. If he is, I can see to it that he gets involved, too.

Shirley in AR.




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Re: 32 gauge versus 30 gauge

Re : Re: 32 gauge versus 30 gauge --- Shirley-Arkansas-USA
Posted by Virginia , Aug 31,2001,20:22 Top of Thread Archive
I just tell them that's what I want and they get them for me ;-)

Carl hasn't retired yet, so he can't spend all his time sitting around watching TV in his underwear. Besides, he doesn't know about all Roy's attention and what he doesn't know about, he can't get jealous about.

Virginia in AL




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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Barbara Hanratty , Aug 31,2001,19:40 Top of Thread Archive
Hi Mindy,
I sat in a chair while I got my injections. Doctor had applied cream first, about 20 min prior, so area was pretty numb. Then he applied ice to each spot prior to the injection. Then a little pressure before proceeding. A couple of spots hurt, but only for a moment. It really wasn't bad at all, but I admit I kept my eyes closed the whole time!
Barbara in NY



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Christel-California , Aug 31,2001,21:36 Top of Thread Archive
I also received my injections lying down, except that I forget to breathe, which I do quite often, even at home, I have to remind myself to breathe deeply.
Christel



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Christel-California
Posted by Billie Lowe (billie lowe,Billie Lowe), Aug 31,2001,21:47 Top of Thread Archive
I get my injections sitting up. It does hurt, but it dosen't last very long, so I figure I can handle it. I think I clinch my teeth & tighten every muscle in my body. I don't talk or move while she is giving them. When my husband is with me, I tell him not to talk to her until she's finished.
Billie



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talking during injections

Re : Re: Injections lying down or sitting up --- Billie Lowe
Posted by Virginia , Aug 31,2001,21:55 Top of Thread Archive
My doctor kept asking me questions today while he was injecting my jaw. I waited til he got through, but I felt like I do when the dentist asks something while your mouth is full of dental tools. He seemed to expect an answer, but he had to wait. (We were talking about the conference.)

Virginia in AL




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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Ann Doyle , Sep 01,2001,08:57 Top of Thread Archive
I sat in a chair once and laid down once. Both were the same. I have a very easy time of it. Ann D.



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Alan Phair , Sep 01,2001,17:42 Top of Thread Archive
Mindy, I have always received my injections sitting in the Dr's Chair. It is usually pretty straight up with little recline at all. I try to keep talking to him while I am getting the injections and that helps to relieve the pain. I have to admit however that my last set of Botox injections were after my lower Myectomy and the pain from he shots were awful. I have never experienced that before and he says it was because of the sensitivity of the areas. The one thing that was great however was that for the first time in years, the Botox provided me some relief. It lasted about four weeks which is four weeks longer than usual. The Dr. wants me to try the Type B but I am hesitant. I have not heard many people with positive results so far...Just an aside, I would think that it would be difficult doing the botox into the eye lids when you are lying down....Alan



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Alan Phair
Posted by Mindy , Sep 01,2001,23:21 Top of Thread Archive
Hi Alan,
Sorry to hear the injections were more painful, but
glad they provided longer relief.
I guess whatever we get used to. From the replies it looks like it doesn't make much of a difference lying down or sitting up.
When I would lay down, the doctor stood behind my head. I never really saw the needle. If you could picture lying down relaxed, the feeling of the cool alcohol wipe, a little pinch, then a little finger massage to keep the botox from spreading, along with nice conversation.
BTW, I talked with Virginia Hill a few weeks ago. I was sooooo happy for
her, she was doing very well after her surgery.
Best wishes,
Mindy



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Re: Injections lying down or sitting up & Myobloc

Re : Re: Injections lying down or sitting up --- Alan Phair
Posted by Pat Philhower , Sep 02,2001,11:10 Top of Thread Archive
Alan, my husband also gets the shots sitting up. And he recently tried the Myobloc, after Botox failed. He is having a frontalis sling Sept 10th and the Dr. tried these shots, thought it might help with the surgery. The other day he drove for the first time in three years. So, don't be hesitant to try them. Botox never worked for him and his surgeries gave only minimal relief and never in the right eye. Maybe it's a fluke, but he's overjoyed! He still has to tape the eyes, but he could very safely, drive! He said they are a little more painful than the Botox (it's more acidic) but well worth trying. Good Luck........Pat



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Diana Panzarino , Sep 10,2001,16:50 Top of Thread Archive
I have always received my Botox shots sitting in an examination chair. The doctor adjusts the headrest so my head can be firm against the back of the chair and there is minimal risk of movement. I have never had severe eye pain from the injections; I have never had any ptosis, and I have never had any bruising. Of course, usually the Botox shots work anywhere from 50-75%. I never seem to get complete relief from the shots.



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Re: Injections lying down or sitting up

Re : Re: Injections lying down or sitting up --- Mindy
Posted by Joanne Matuzas , Sep 10,2001,17:20 Top of Thread Archive
I have always sat up. Also with the second doctor I consulted with.
Didn't even have my head propped up against anything. Joanne M. San Diego, CA



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Owen Taylor , Sep 01,2001,16:46 Top of Thread Archive
Hi Donna:
I am also a reader, though lately I can't read for very long. Try the shots! They don't hurt like regular shots, While I don't enjoy getting them I'd have to admit the pain is pretty minor.



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Re: Hi there! Have a few questions for everyone

Re : Hi there! Have a few questions for everyone --- hilltops
Posted by Joann Humphrey , Sep 02,2001,15:38 Top of Thread Archive
For me the botox injectionsd were not painful, just felt like a little sting, which went away in less than 30 min.
Good luck, hope it'll help you. Joann in Ft Smith, AR



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