Re: Ptosis
Hi Deirdre, Welcome to the bulletin board.
Sorry that your dad has Blepharospasm but glad that he has you to ask some questions for him. Delaine has already answered your questions but I thought that I would just throw my two cents worth in, too.
I used to get a ptosis every time I got botox from my first botox doctor. My ptosis would last as long as the botox did-which was 6-8 weeks. It would be better by the end of that time but was still slightly there. Others have said that theirs only last for a couple of weeks and then gets better.I changed doctors and found out that this didn't have to be a side effect. It is almost always technique related. It is a matter of getting botox into the levator muscle that is in the middle portion of your upper lids. The levator muscle is the muscle that opens your eyes. Injections in the upper lids and brow area should be given with the needle pointed away from this muscle and not toward it. Injections should not be given in the middle portion of the lids or in the middle of the brow area. A ptosis can be avoided if injections are done properly. Rarely, anatomy of the eye lid, itself, might cause seepage of botox into the levator muscle but this can usually be avoided. The doctor may or may not want to hear this. It is unpleasant and frustrating but it is temporary. I've been there and I know just how frustrating it can be. There is nothing that your dad can do to make it go away any sooner than it is going to. I'm just glad that I found a doctor that was very good at giving the injections and that was one problem that I didn't have to deal with again. I tried talking to my first doctor about it but he wasn't a good listener. He was the "doctor" after all. Tell your dad to hang in there and it will eventually go away. Can he read the bulletin board or does he have a computer? There is additional information that you could read at the top of the bulletin board page where it says "Main Pages". Thanks for asking the questions for your dad. You are a good daughter and very special to do this for him. Welcome again and ask whatever you like. Shirley in AR.
Re: Ptosis
Thanks, Shirley for the insight on Ptosis and the compliment (smile). I wish I could do more for my Dad. Ptosis seems like it effects people differently. And also, it seems like it can be avoided. My mom started using their computer about 6 months ago, but my Dad doesn't have the patience to learn right now. Thank God he has my Mom, since all of us kids are grown and live either in the city or in another state. I have forwarded your message to my Mom and Dad and they sincerely thank you very much! Dee
Re: Ptosis
Hi Dee. I am 49 and have had BEB for about 2 1/2 years. I had used the computer very little before I developed BEB. I have gradually learned little bits and pieces along the way. I understand your dad's not wanting to learn about the computer right now. I had to do it out of self preservation to learn more about Blepharospasm. That is the only thing that got me through things. I'm glad that your mother is trying. Maybe she could get on the bulletin board and read him the posts. I think that he would benefit from that.
You are right that a ptosis does effect everyone differently. What you can do for your dad is to learn as much about BEB as you can. It is very frustrating and so many of the doctors don't know very much about it or the treatment options. It can make for a lonely and depressed person. Just let him know that you love him and that his problem does not embarrass you. When you are with him, offer him a loving daughter's arm to hold on to in case his eyes do close. Let him do the talking as that is also likely to keep his eyes open. If you go out to eat in a restaurant, make sure that any lighting is behind him and that he is not sitting next to a bright window. He may or may not be able to read a menu because of the BEB or anything else for that matter so know what he likes and check out the menu for him. Audio tapes are nice if he is unable to read. Wrap around sunglasses are a must. Be sure that he gets the BEBRF Newsletter which is only $15.00 a year and well worth it.
Sorry to offer so many suggestions but they are easy things for you to know about and do.
Thanks for helping him. I'm sure that it means a lot to him as it does when my sons are knowledgeable about my blepharospasm and know what to do to help me.Take care and check in every now and then or have your mom try to get on the bulletin board.
I left my email address if you click on my name above. You can give it to your mom, if you think that she would like to email me. Shirley in AR.
Re: Ptosis
Hi ShirleyI just called my Mom and told her that I just received a response from you and hopefully she can try to get on the bulletin board or send you an email. My Dad is 67 years old and has had Blepharospasms and Meige for over 3 years now. My Dad has great days, good days, and not so good days. But again, I thank God for my Mom being there to help, encourage, and motivate him to do various things when he can and rest when he cannot. My Mom and Dad attended the annual conference in Arizona in August and received a wealth of knowledge. They also received the newsletter. Please there is no need to apologize about giving suggestions. They are very helpful and I truly appreciate any assistance you can provide. I just want my Dad to live a very full and productive life and live it as best as he can. These suggestions will help him do just that. So, please keep the suggestions and encouraging words coming (smile)! You and your family are in my prayers!
Dee
Re: Ptosis
Hi Dee,
I was at the conference also. Tell your mom and dad that I was the mouthy one that was on the patient panel on Sunday that talked about the bulletin board. I posted some pictures of some of us on the bulletin board when we got back. The link below will take you there.Sounds like your mom and dad are doing all the right things. Sorry about the picture of Dr. Anderson's boots. It is a long standing bulletin board joke (I think on me). http://www.blepharospasm.org/forums/beb/posts/16151.html Shirley in AR.
Re: Ptosis
Sorry to hear about your dads ptosis. The BB is a good place to get info. Tell him he'll need to be patient & hopefully it wont last too long.
I had ptosis in one eye just once, and it lasted only 10 days or so. It's frustrating, but will get better.
Joann in Ark. where we've had a beautiful week of fall weather.
Re: Ptosis
Thank you Joann for the encouraging words!I have forwarded your response to my Dad and he thanks you so much!
Re: Ptosis
i had a major ptosis recently after not having one in quite awhile. it only lasted a week or so and went away as the botox fully kicked in. one of my eyes as far as the muscles are concerned is worse than the other and frequently is the first one to get worse and the last one to get better. i have noticed that the celebrex sometimes helps even this out. i usually always have a minor ptosis after my injections that fluctuates as the botox corrects the pulling muscles.
Re: Ptosis
I used to get ptosis every time my other doctor injected me. It was always my left eye and would last about a month. I would wake up with my left eye half closed and by the end of the day it was closed all the way. My doctor told me it was a normal side effect and there was nothing that could be done so quit complaining. I was trying to work as a cpa and care for my 1 year old daughter and was extremely depressed about it. Now that I have been seeing a new doctor for almost 5 years I have had mild ptosis only once and he apologized profusely!Kelly in Dallas
Re: Ptosis
Thank you so much for replying to my daughter Deirdre's inquiries re: her dad's condition. Deirdre is a very special, caring daughter, who tries to find out all that she can about Blepharospasm w/meige. We have a caring doctor, whom we travel to see every l2 weeks. As we have not found anyone here to do administer the injections, we continue to go to Los Angeles.
I know that it gets frustrating for my husband, but this is the first time that his eyelid has closed completely, and he knows that it is temporary, but the frustration still sets in sometime. Nevertheless, he knows how blessed.
Thanks for sharing and keep in touch!Gloria Baxter
Re: Ptosis
You are so blessed to have a daughter who is there for her parents. We are glad you are able to use the Bulletin Board for your husband. Having a caring doctor is very important. Hopefully he is open to learning more about giving Botox to prevent ptosis. When it happened to me the first time, my doctor said it had only happened to her 3 times in her practice. She was one who gave it the same way to everyone as she was taught in school. She would draw a picture and show the medical students where it was given and in what dose at each site. As I became more knowledgeable I became more empowered and brave enough to challenge that approach and asked her to look at me spasm and give it where I needed it and avoid any area that the Botox could migrate to the levator muscle. She listened and I never got ptosis from her again. While she was on maternatiy leave I had someone else give it and I said the same thing to her and she assured me she knew how to avoid the muscle and I ended up with the eye half closed....she will give it to me again. Even good caring doctors often know less than a patient who has educated themselves through the foundation and the BB. I've learned more here than anywhere and wouldn't take anything for that information and support I've received here. I also give the doctors a brochure and ask them ask them to contact the foundation so they get the newsletter and more brochures to give patients if they aren't on the mailing list.
I was told by several doctors in Nashville that no one that they knew gave Botox to BEB patients in my home town of Columbia. I found 4 neurologists who do and see a lot of movement disorder patients as well. I've been doing better since I am seeing someone locally who is giving me a very small dose of Klonopin. No one in Nashville would give it to me either because they didn't feel comfortable with it or they just didn't believe it helped BEB. They were wrong in my case. So keep posting and reading the BB and keep communicating with your doctor.
Re:Welcome to the bulletin board
Hi Gloria,
Welcome to the bulletin board. We don't always discuss underwear on here.
Your daughter is a special lady. We love hearing from family members. You and your daughter are also dealing with this even though it is your husband that has BEB and Meige. It is difficult for you and your family, also. It will make it easier if you have a lot of information and you can certainly get it or read about it here. If you or your husband have any other questions or want to know how some of us handle different things, just ask.
We are not doctors but with all the input that we get here, we learn things and usually keep up with the latest that is going on.I'm sorry about the ptosis problem. About the only thing that your husband can do at this point until it wears off is to make sure that he rests his eyes periodically. When I have had them (and I believe that Delaine or someone has already mentioned this) the droopiness always worsened when I or my eyes got tired. It was always worse in the evening. Some people have actually even taped their eyes up a bit(to hold the lid up) I don't really recommend this as I would think that it would add or cause a dry eye problem. A little taping might help, though. In saying that, I will add that I tried it and it didn't work. Others have done it, though.
Frustrating but luckily, temporary. What type doctor (or specialty) does your husband see? Again, welcome to the bulletin board. I'm glad that you were able to attend the conference and I wish that I had gotten to meet you and your husband. Shirley in AR.
Re: Ptosis
Hi Gloria,I can't let Shirley & Delaine upstage me so I want to welcome you to the BEB BB too. Were you at the conference? So was I. I'm sorry we didn't get to meet but I am glad you and your daughter found us on the bulletin board. Tell your hubby not to get his shorts in a knot about the ptosis. It will go away eventually. Take care. Where do you live? Dee in OR
Re: Ptosis
Gloria,I am originally from LA. What city do you live in? My husband and I and the three kids "escaped" from Monrovia (next to Pasadena) to rual Pennsylvania about 9 years ago. That was the fall after the LA riots and it seemed like a good time to leave as my company moved from Pasadena to Lancaster (my twin sister still leaves there). Glad to here that you and your daughter are such a support for your husband. My family is wonderful also and I'm sure the others will agree that we all need a support network to help us deal with this. How long has your husband been dealing with this? Looking forward to hear more from you and your family. Take care...Coleen in Central PA where the fall weather today was beautiful.
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