Sensitivity to light/ Blepheroplasty??


Posted by Alice Baum , Jan 16,2002,19:00   Archive
I had been diagnosed with BEB last year and began having Botox shots in my upper and lower lids. I've discontinued them because my eyes stayed open OK but I was so sensitive to lights, especially florescent type lighting. My eyes would forcibly want to close anyway because the light hurt and it was really uncomfortable.

Is there anyone I can discuss this problem with? Also sent for special sunglasses from Utah and found them to be innefective. I wear up to 3 pair of sunglasses at a time it gets so bad.

Also wondering about the possibility of an operation I had in 1993 for excess eyelids called 'blepheroplasty' and a brow lift possibly contributing to this problem now???? The surgeon removed an almond size portion of skin on the upper lid and after the brow lift it took a long time for the facial nerves in my forehead to recover. It wasn't done for cosmetic purposes because my lids actually drooped down to my eyelashes.

Hope this wasn't too much for one topic and would appreciate any feedback as I'm 59 and this has impacted my life severely. Walking into furniture etc. Can't drive anymore and I'm almost ready to get a white cane.

Thanks, Ali

--modified by Alice Baum at Wed, Jan 16, 2002, 19:06:00




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Re: Sensitivity to light/ Blepheroplasty??

Re : Sensitivity to light/ Blepheroplasty?? --- Alice Baum
Posted by Shirley-Arkansas-USA , Jan 16,2002,19:32 Top of Thread Archive
Hi Alice, sorry that you are having so much trouble. Most of us do have light sensitivity to some degree. Some more than others, though it does seem to be a common denominator. Wrap around sunglasses, FL-41s (that you've tried) and sun visors all help somewhat. My light sensitivity seems to come and go. Sometimes it is extreme and sometimes it is only minimal. Cloudy days are worse for me while others have more difficulty with bright sunshine or flourescent lighting.
The over the counter drug, Benadryl, seems to help my light sensitivity. I don't know why, but it does. I'm back to taking 50mg three times a day. If you are not used to it, that amount can make you very sleepy.

No one is probably going to be able to tell you if your brow lift and Blepharoplasty have contributed to your Blepharospasm or light sensitivity. I wish that it was all that simple and one could determine the cause, but I'm afraid that it is not. It may have contributed or it may be that you were having some symptoms of BEB before you had the surgery and that contributed to your need for the brow lift and ptosis repair. The stretching and pulling and squeezing of the muscles around the eyes over time will make things very droopy.

I had an upper myectomy and ptosis repair (blepharoplasty) done about 9 months ago for my BEB and apraxia. My forehead is still somewhat numb. It does take a long time for things to get back to normal-if it ever does get back to "normal".

I think that possibly your best bet for someone to talk to about your light sensitivity would be a neuro-ophthalmologist. I'm not sure that they would even be able to give you any hard and fast information, though.

Most of us do better with indirect lighting, blue or pink lightbulbs and torchiere lighting.

Good luck to you,
Shirley in Arkansas




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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Shirley-Arkansas-USA
Posted by Alice Baum , Jan 17,2002,09:31 Top of Thread Archive
Thank you both for your responses. Shirley what kind of doctor did your myectomy? Did you at one time receive the Botox shots and it didn't work? Has the operation helped at all and does it have the same effect as the shots?

I'm seeing my Neurologist on the 31st and wondering if I should ask him the name of a neuro-opthmalogist it seems to me they are rare and few between.

Thanks for the feedback.

Alice




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Re: Questions about myectomy

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Alice Baum
Posted by Shirley-Arkansas-USA , Jan 17,2002,11:35 Top of Thread Archive
Dr. Anderson is an oculoplastic surgeon and has been doing myectomies for many years now. He has done more than anyone else in the US. He attends all the Blepharospasm conferences and is a senior consultant on the BEBRF Medical Advisory Board and also on the BEBRF Board of Directors.

Botox has always worked for me to eliminate the tight squeezing. It has never done anything to "open" my eyes, though. Even without the sqeezing, my eyes still want to remain closed.

The operation did help. I had a specific area over my right eye that if we were able to stop the squeezing there, I also had a ptosis (or droopy lid) of that eye from where the botox needed to be placed. That problem has been completely eliminated. I have only a minimal amount of squeezing from my upper lids now and that is located close to the bridge of my nose. I still receive botox for my forehead muscles and my lower lids as the surgery only was done for my upper lids. The apraxia is better but certainly not gone. It is one of the harder problems to treat in association with the BEB. Even though I did not get as much relief as some have from my upper myectomy, I would still do it again for the improvement that I did get. It has made me a little more functional and only on rare occasions now, do I have to be led around. Which was pretty typical before the surgery.

The surgery removes the offending muscles permanently so you can't really say that it works like the botox does. Botox is a temporary fix where the surgery is permanent and not something that should be entered into lightly.

Hope that this helps a little.
Ask whatever you like.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Thu, Jan 17, 2002, 11:35:48




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Re: Questions about myectomy

Re : Re: Questions about myectomy --- Shirley-Arkansas-USA
Posted by Ann Doyle , Jan 17,2002,12:47 Top of Thread Archive
Shirley, what are the down sides of a myectomy? If it makes things better, why not get it. What can go wrong do you know? Ann Doyle



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Re: Questions about myectomy

Re : Re: Questions about myectomy --- Ann Doyle
Posted by Shirley-Arkansas-USA , Jan 17,2002,15:55 Top of Thread Archive
Ann asked-If it makes things better, why not get it?

It is a permanent removal of muscles around the eyes. Those muscles were put there for a reason. It alters the anatomy of the musculature around the eye. It is not a simple surgical procedure.

Ann asked-What can go wrong do you know?

"Elective Surgery Advisory" that I signed before my upper myectomy was done.

Complications:
1. Infection
2. Bleeding requiring return to O.R.
3. Hematoma (blood clot)
4. Excess or obvious scar
5. Chronic pain
6. Weakness or paralysis of the muscles that elevate the brow or close the eye
7. Asymmetry of the eyebrows or eyelids (often present early postoperatively)
8. Possible diminished or absent sensation to the forehead or cheek
9. Double vision
10.Visual loss
11.Lumps/irregularities under the skin that resolve over a few months
12.Skin loss requiring further reconstructive surgery
13.Irritation or dryness of the eyes
14.General disappointment
15.Standard anesthesia risks

I would also add "forehead itching" and "excess tearing" which have continued to be a problem for me but are gradually resolving.

Results are not always predictable and as you can see, there are many things that can go wrong. One should think long and hard about having the procedure done and your chances of success go up when you have someone do it that does this particular surgery routinely. They go down dramatically when you let an inexperienced surgeon practice on you.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Thu, Jan 17, 2002, 15:57:42




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Re: Questions about myectomy

Re : Re: Questions about myectomy --- Shirley-Arkansas-USA
Posted by Ann Doyle , Jan 18,2002,09:23 Top of Thread Archive
Thank you Shirley. I know I can always count on you to tell the full story. I would rather have the after effects of the surgery than blepharospasm except for chronic pain, visual loss and double vision. That is really taking a chance. Right now I'm OK 1/3 of the time==right after botox and then2/3 of the time I can't drive but I can do some things and one third of the time I stay in bed. When I'm in bed most of the time, I'll probably give it a try. Right now I'll settle for feeling good 1/3 of the time and counting the days to the next Botox and knowing that at least for awhile I have some relief. Thank you Shirley. Ann Doyle



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Re: Questions about myectomy

Re : Re: Questions about myectomy --- Shirley-Arkansas-USA
Posted by Ann Doyle , Jan 17,2002,13:17 Top of Thread Archive
It sounds like Dr. Anderson is the one to see. I live in KY and found one at Vanderbilt in TN. How can I find out if he's any good? His name is Ralph Wesley. Has anyone heard of him? Ann Doyle



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Re: Qualified surgeons

Re : Re: Questions about myectomy --- Ann Doyle
Posted by Shirley-Arkansas-USA , Jan 17,2002,16:06 Top of Thread Archive
Ann you can always contact the BEBRF and ask them. They know of the surgeons around the US that do the most myectomies. If he has done very many, they will probably be aware of him and familiar with his "work". They can point you in the right direction.

You can also ask him how many myectomies he has done and if he does them routinely. One a month is not good. One doctor that told me that he would do a myectomy on me had done 2 in the past 7 years. This is a tip to run in the opposite direction even though he was an excellent oculo-plastic surgeon with a very good reputation. This particular surgery was not one that he routinely did which means that he would have been practicing on me.

Ask to speak to patients that he has done this procedure on and talk with them and find out what kind of results they had.

Shirley in Arkansas




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Re: Sensitivity to light/ Blepheroplasty??/alice

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Shirley-Arkansas-USA
Posted by kathy , Jan 18,2002,05:37 Top of Thread Archive
alice, i recently changed most of my interior lighting to the soft pink bulbs, which delaine told me about. it seems to really help, more of a glow than a glare. also i believe the knighton optical research project is trying other colors of lenses then the roscolored ones for those patients in which they don't work. you should call them back and ask them about this.



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Re: Sensitivity to light/ Blepheroplasty??

Re : Sensitivity to light/ Blepheroplasty?? --- Alice Baum
Posted by Sally - in - Idaho , Jan 17,2002,00:00 Top of Thread Archive
Hi Alica,

I can empathize with you on the light sensitivity ... both to natural light and fluorescent lighting. That is possibly my worst symptom. My neurologist MDS has come up with no help for that. He did say I could try benadryl, but I am already taking so many meds that I feel like a walking pharmacy and don't want to add more. I've not yet tried the FL-41 glasses, but many feel they are beneficial.

Sally in North Idaho




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Jumping in Here

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Sally - in - Idaho
Posted by NikkiS , Jan 17,2002,14:19 Top of Thread Archive
Sally,
I haven't figured out where to get in and out of the bulletin board so I can respond to a specific question. So I'm jumping in now to respond to your question about where I live in Idaho.
I live in Boise and have had signs of blepharospasm for close to five years. I was diagnosed two years ago by a doctor here after locating him with the help of the BLEP Foundation. I had a limited (upper eyelids) myectomy by Dr. Anderson early in December.
It's too soon for me to know the full results of the myectomy. Already I am experienceing some squeezing sensations, but it may be due to the stiffness of the forehead, eyebrows and eyelids.
Nikki



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Re: Jumping in Here

Re : Jumping in Here --- NikkiS
Posted by Shirley-Arkansas-USA , Jan 17,2002,16:26 Top of Thread Archive
Hi Nikki,
After you read someone's post, if you would like to respond to it, simply look down at the bottom of that post (you may have to scroll down a little) and in the lower left hand corner it will say "Post Reply". Click on this and the post will reappear in blue(?). If you scroll down a bit,it will say "Post Message". You will need to type your post in the "message" body and when you are finished click on "Post" at the bottom of the page.

You can also change the "subject" heading in this post by highlighting what is already there and deleting that and then typing in the new subject heading. It looks like you have already figured that out, though. You're doing good. You can always go back to a past post and read it again and then post under that message.

You may or may not choose to enter your email address in the designated box. That is up to the individual.
Lesson over.

Don't be real concerned (easy to say) about the squeezing. Dr. A probably told you that you would need botox for the lower lids and forehead. I had quite a bit of swelling for months and that was a problem with getting the botox as the botox will tend to seep into areas where you don't want the botox to go when there is swelling. You won't have to get any in your upper lids, though.
Who will be giving your botox now? If it won't be Dr. Anderson, you will really need to let the doctor know where you had the surgery so that they don't inject these sites. Dr. A will give you a diagram if someone else will be giving the injections.

I got botox five weeks after my surgery.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Thu, Jan 17, 2002, 16:30:10




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Re: Jumping in Here

Re : Jumping in Here --- NikkiS
Posted by Sally - in - Idaho , Jan 17,2002,18:27 Top of Thread Archive
Hi Nikki,

Shirley gave good instructions to you. It is kind of complicated to figure out and it took me awhile to get brave enough to post.

I was hoping that you were near where I live and that we could get a support group going. I was invited to a gathering in Boise last year, can't recall what month, but the man who sent the flier said it was an annual event. I ended up not going, but had considered it. Did you attend? I do correspond now and then with another "victim" in Boise. She said she hadn't even known about the meeting or the group. Wonder if I'll get invited again this year.

Sally in North Idaho




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Idaho Contacts

Re : Re: Jumping in Here --- Sally - in - Idaho
Posted by NikkiS , Jan 19,2002,21:46 Top of Thread Archive
Sally,
You may be thinking of a support meeting held early last year (as I recall) in Boise with Dr. Anderson speaking. It was the first meeting I attended and I haven't been notified of another.
If there is another meeting in Boise, I hope you can come and we can meet. Let's keep in touch.
As luck would have it, I live next door to another blepharospasm person! Last September we flew to Salt Lake City for our botox treatments and that's when I decided on the myectomy.
I know she's not the person that you're corresponding with in Boise. If your contact is willing, I'd like to visit with her.
Nikki



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Re: Idaho Contacts address for Nikki

Re : Idaho Contacts --- NikkiS
Posted by Sally - in - Idaho , Jan 20,2002,21:37 Top of Thread Archive
Hi Nikki,

I've left my e-mail address in this post. If you want to contact me, I will give you the info about the other lady. She is most interesting!

Sally in North Idaho, who would like to meet the gals in Boise, Idaho




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Re: Idaho Contacts

Re : Idaho Contacts --- NikkiS
Posted by Sally - in - Idaho , Jan 20,2002,21:38 Top of Thread Archive
P. S. Yes, that was the meeting I was thinking of. Glad you got to go.

Sally in North Idaho




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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Sally - in - Idaho
Posted by Rosemary McGhar , Jan 18,2002,09:16 Top of Thread Archive
My first visit to The Bulletin Board. I was diagnosed with Blepharospasm about two years ago. Bo-Tox helped in the beginning but unfortunately I am realizing that it's not doing much good at all anymore. Also I have developed a strong sensitivity to light in the last few months. Doesn't seem to bother me during the day at work (I do use a computer and work under florescent lights). However, when I go outside I really notice the sensitivity. Also I am finding it next to impossible keeping my eyes open when trying to watch TV. Seems to be worse at night after I've worked all day. I do not know about the FL 41 glasses. Can some of you tell me about that? I was able to pick up a pair of sunshades at the Wal Mart Eye Clinic that can be worn over my regular glasses (which are tinted). These glasses help outside tremendously--they have a "wrap around" feature that is tinted even on the sides. Cost about $25.00. Have not tried wearing them in the house at night. I'm stubborn and am determined that this condition is not going to get the best of me. Is there any encouragement out there?



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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Rosemary McGhar
Posted by Christel-California , Jan 19,2002,10:18 Top of Thread Archive
Welcome to the bulletin board, Rosemarie.
You need encouragement, this is where you find it. Need sympathy or advice? Right here - same place.
WE also do pity parties as needed. Take your pick.

Christel in Ca. BEB/Meige, keeping this short, because you'll be getting the long versions from the others.




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Re: Welcome Rosemary

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Rosemary McGhar
Posted by Shirley-Arkansas-USA , Jan 19,2002,17:21 Top of Thread Archive
Hi Rosemary and welcome to our bulletin board. I'm glad that you are still able to work.
Your doctor may need to change the sites a little for your botox or you may need a higher dose or your symptoms may be getting a little worse. Many of us start out with the light sensitivity. You'll find that we all are a little different with our symptoms and what bothers us most but we usually all have a few common threads.
I also noticed fairly early on that TV was difficult to impossible to watch and reading was very difficult.
I also wear FL-41 rose tinted glasses. I believe that someone has already given you the number to call to inquire about them. They come in 3 different degrees of a rose tint. I have the lightest shade to wear indoors and the darkest to wear outdoors. I still use wrap around sunglasses over them, though, for outside when things are very bright. At times I just need the sunglasses over my lightest tint for outdoors. At this time, I believe that there is only one place to get the FL-41 tints and that is at Salt Lake City, Utah.

There are also medications that can be taken to help with the BEB. I find that the neurologists are more inclined to prescribe medications for this than ophthalmologists. Others may have a different opinion on that.

When you say that the botox is not helping anymore-is it not getting rid of the squeezing or are you just having more difficulty getting or keeping your eyes open? There is a difference, though sometimes hard to tell what actually is going on.

Keep in touch with us and ask what ever you like. We do understand what you are going through like no one else is able to.

Shirley in Arkansas




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Re: Welcome Rosemary(Shirley)

Re : Re: Welcome Rosemary --- Shirley-Arkansas-USA
Posted by Billie Lowe , Jan 19,2002,22:36 Top of Thread Archive
Shirley, when you answered Rosemary's post, was the botox not getting rid of the squeezing or was she just having more difficulty getting or keeping her eyes open? I have trouble getting & keeping my eyes open sometimes, actually a lot lately. I'm not sure why that is. I've thought that the muscles in my eye lids are week, since I've gotten botox since 94, and the botox just makes them droopy. If I don't get injections then I blink a lot. The lesser of 2 evils I guess.

Billie in Kansas




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Re: Shirley

Re : Re: Welcome Rosemary --- Shirley-Arkansas-USA
Posted by becca (Becca,becca), Jan 19,2002,22:49 Top of Thread Archive
I just read the your post to Rosemary, about about eyes not opening, I had botox end of decemeber and right now its hard to keep my eyes open and I sorta scrunch my nose to open them. What the heck is going on with me? My lids feel heavy. what do you think?
Cindy



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Re: Ptosis/Apraxia of lid opening

Re : Re: Shirley --- becca
Posted by Shirley-Arkansas-USA , Jan 20,2002,12:32 Top of Thread Archive
Hi Billie and Cindy, sometimes if the botox gets injected close to the levator muscle(the muscle in the upper lid that opens your eye) it will make it very difficult to open your eyes or you might have what is called a ptosis (or droopy lid that just lets the lid hang at half mast). It is important for the doctor to not inject the botox close to the center of the upper lid. This could be happening or you also could have apraxia of lid opening. This is very difficult to treat and botox can make it worse as it weakens the eye muscles. Botox generally works well for people if BEB is the only problem (I'm not making light of BEB) and the doctor gets the dosage and sites right. When this happens, the botox takes effect and people's eyes open and they can go on about their lives for a period of time fairly normally until the botox wears off and their eyes close down again due to the squeezing.
There is another group of us that even when the botox is given in the right places at the right doses and the squeezing is eliminated, our eyes still don't want to open. Hard as we try sometimes, they just aren't going to open. We struggle and move our heads around and make all kinds of faces just trying to open our eyes. We can eventually get them to open for a brief time and then they gently close again.

You need to check with your doctors. Maybe go back to see them about 3 weeks after your botox injections, as it should be working at it's best about that time and let them look at you and what your eyes are doing. If it is a ptosis that is induced by the botox, the doc needs to modify your injection sites. If is apraxia of lid opening, it is very difficult to treat. Surgery can help this and I have found that some medications can help. It is a very frustrating problem with few answers. I've had an upper myectomy and still have the problem of apraxia. It is better but it is definitely still there.

A Frontalis Sling is occasionally done for apraxia. I'm not wanting to go that route at this time.

The medication Benadryl(non prescription) helps some for me to get my eyes open. I'm not sure why but it does. It can be very sedating if you are not used to it, though.
The stimulant drug Adderall (prescription) also helped me with the eye opening but it also caused my blood pressure and pulse to go up so I had to stop it.

Too long of a post again. I'll hush.

Shirley in Arkansas where the sun is shining brightly




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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- Shirley-Arkansas-USA
Posted by becca (Becca,becca), Jan 20,2002,20:33 Top of Thread Archive
Thanks Shirley, I will talk to my doc. even thou i feel very intimated by him.



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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- Shirley-Arkansas-USA
Posted by Billie Lowe , Jan 20,2002,22:49 Top of Thread Archive
Thanks Shirley, I printed your answer off so I can re-read it. Just about the time I think I know what my eyes do I realize that isn't what they are doing. I take Benadryl sometimes & sometimes it does help. I have another sinus medicine that I take that helps also, but after I take them for awhile, they aren't as effective. I quite for awhile and then start again. I guess the only thing I know for sure is that my injections don't work as well for me as they used to. I get my next injetions the 30th of January. I'm hoping for better results.

Billie in Kansas where our snow is mostly melted and today was nice.




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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- Billie Lowe
Posted by Shirley-Arkansas-USA , Jan 23,2002,17:23 Top of Thread Archive
Hi Billie,
I know what you mean about the Benadryl losing it's effectiveness and you are doing the right thing by stopping it and using something different for awhile. Later, it will work again.

I hope that you have better luck with your next injections. Talk with your doctor a little about it and see what he or she has to say about what else you could do or try.

Shirley in Arkansas where it was in the 70's and muggy today. Storms now.




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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- Shirley-Arkansas-USA
Posted by Billie Lowe , Jan 24,2002,14:58 Top of Thread Archive
Hi Shirley, I wonder if a Frontalis Sling would work for me? The botox seems to control my beb for the most part, I still squint & squeeze my eyes quite a bit, mostly a week or 2 before injections, my biggest problem is keeping my eyelids up. I have really been having trouble getting my hair fixed in the mornings, the reason being I can't keep my eyes open long enough to see what I need to do to it. Do you have trouble fixing your hair? It is very frustrating to me. I will talk to my doctor Wednesday. She is a Pediatric Ophthalmologist & gives boxox injections. She is a very good doctor but treats mainly children. So far she seem very willing to learn anything about BEB & is very good giving injections. When I read some of the horror stories about doctors on the BB, I feel fortunate to have her. (She does not do surgery for BEB. I have told here that if I decide to have surgery I would probably go to Dr. Anderson since I had talked to him at the conference the year that we went. A friend of mine here had a Dr. Pratt in Washington state do her surgery for BEB. She was very happy with the results & said that he had trained under Dr. Anderson. Have you heard of him? I think his first name is David.

This is long, sorry.

Billie in Kansas where we are having a bright sunny day in the 50's.

I heard on the weather last night that you all were having sever storms in Adkansas.




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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- Billie Lowe
Posted by mary ledbetter (MARY LEDBETTER,mary ledbetter), Jan 24,2002,21:16 Top of Thread Archive
Billie, I was at a suport group last year in Redmond,WA. DR pratt show slides and talked about frontail sling surgery. He had slides and one of the ladies at meeting had the surgery and she was real happy with the surgery.

I have trouble with typing and have not posted much. I am in the middle of test on my lungs.I am just tired i think. My bebro is o.k. right now but the aparixety is hard to live with. I had to go on disabilty for now untill I can keep my eyes open. I find being home and quite keep them open but if I go out or have company they close.

I do believe I have it better than so many because I am 68 years old and can enjoy other things. I have great friends who take me for botox and other dr. appointments. My son put read a book on my computor and they can get books read to me from computor.

Mary in Bothell ,WA. My eyes are going .




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Re: Ptosis/Apraxia of lid opening

Re : Re: Ptosis/Apraxia of lid opening --- mary ledbetter
Posted by Billie Lowe , Jan 25,2002,21:34 Top of Thread Archive
Hi Mary,
I know what you mean about Apraxia. Sometimes it is really hard to get my eyes open when I need to see something. I hope the tests on your lungs come back okay. Dealing with BEB is enough I think. I'm so glad that you have other things to enjoy. I also have so many things I enjoy. Music for one. I am also the secretary at our church, which I love doing. My pastor is aware of my eye problem and is very understanding. We belong to a small church, so I just work mornings.
Having friends that will take you places is great. My daughters try to take me to my dr's appointment for my injections if my husband is not home.

Billie in Kansas where we had another beautiful day.




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Re: Shirley

Re : Re: Shirley --- becca
Posted by Mary G , Jan 22,2002,17:20 Top of Thread Archive
I got my life back after having surgery for Apraxia... I have 70% Apraxia and 30% Blepharospasm...(that is what my doctor and I have decided) After being functionally blind for five months I decided to have surgery and it is the best thing I ever did. I had a limited myectomy and frontalis sling done. Because of my medical problems I lost my job and I am selt supporting...I now have a new job and work a 40 hour week and get Botox every 7 weeks... sure do wish I could go longer but tried it and it does not work for me. I have had to make adjustments in my life-when tired you have to rest and do only what makes you happy. I do not look forward to my "Botox day" but have two friends in chemo struggling with cancer... I shall not complain. Life is good and there are answers out there. Keep asking questions--I have learned so many wonderful things from the BB. When I first got diagnosed, I don't know what I would have done without everyone and their support. It is our responsibility to make people aware of this condition and to help all that we can. M



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Re: Frontalis sling

Re : Re: Shirley --- Mary G
Posted by Shirley-Arkansas-USA , Jan 23,2002,17:47 Top of Thread Archive
Mary, I knew that you had an upper myectomy done but I guess that I had forgotten that you also had the Frontalis Sling done, also. I know that they have helped some and others have had them "undone". I'm glad that yours has helped. Did you have the Upper Myectomy and Frontalis Sling done at the same time?

Are the botox injections very painful for you? I ask because you said that you "do not look forward to Botox day". Mine have not been, since my surgery as they don't inject in the surgical area. In fact, they are less painful and three different doctors have now injected me since my surgery.

Do you have any problem with dry eyes and is this worse after having the Frontalis Sling done? This is one of my concerns with it.

This bulletin board has also been a great support system for me. I'm glad that I found it as early on as I did. I would have been a much worse "basket case" than I was.

Shirley




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Re: Frontalis sling

Re : Re: Frontalis sling --- Shirley-Arkansas-USA
Posted by Alan Phair , Jan 24,2002,16:27 Top of Thread Archive
Hi Shirley. I have meant to give you a jingle a number of times as I know that you have been having a rough go of it for awhile. I hope that things are a little better. The reason that I am responding to this message in particular is that I had my injections this morning and boy did they hurt. They have been really painful since I have had the lower Myectomy done. It is so bad that I actualy dread going to the Dr.. The only blessing is that they finally seem to help a little where before the operation, they never did. I still have a lot of closing of the eyes and my neck and mouth are real bad. I still fight it however and refuse to give up. I am staying too active but that is my nature and I know that I just couldn't and wouldn't change.

I have thought about having a frontalis sling put in and may yet explore that avenue some day. You know me, I will try anything. Jan and I are heading to Aruba this weekend for a week and I am really looking forward to it. If you remember, last year we went and I was in a wheelchair and crutches with my broken heel. While the heel is still sore, I can at least walk on it even if there is a little limp. It actually has been a mild winter here in New England and it is close to 50 today which is rediculous for this time of year. Who knows, there may be several feet of snow on the ground when we get back. Anyway, glad to hear from you and again, I hope that things are better. You have been in my prayers these last few months.....Alan




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Re: EMLA CREAM/ICE CUBES AND ARUBA

Re : Re: Frontalis sling --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Jan 25,2002,07:26 Top of Thread Archive
Hi Alan, I'm sure, from you description, the pain of those botox injections was awful - did you try the Emla cream or maybe, if not, you might next time? The posts lately about putting the needles in the freezer brings to mind, maybe an ice cube applied to the injection sites might help with the pain!

The locals in Aruba won't recognize you without your wheelchair and crutches:-) - hope you have a really lovely time there - enjoy. Hope you don't come back to a snow storm - didn't you last year?

June in Toronto (beb/meige) who wishes she could go to Aruba as it sounds great!




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Re: EMLA CREAM/ICE CUBES AND ARUBA

Re : Re: EMLA CREAM/ICE CUBES AND ARUBA --- June in Toronto
Posted by Alan Phair , Jan 25,2002,08:03 Top of Thread Archive
Thanks June. Actually, the doctor suggested that maybe next time he would give me an ice pack to put on while I am waiting to see him. He knows that I never have complained about pain before so he realizes that it really must hurt for me to say anything let alone scream. Maybe I will take him up on it. The Emla cream for me just does not seem like something I would like............Alan



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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Sally - in - Idaho
Posted by Rosemary McGhar , Jan 18,2002,09:18 Top of Thread Archive
My first visit to The Bulletin Board. I was diagnosed with Blepharospasm about two years ago. Bo-Tox helped in the beginning but unfortunately I am realizing that it's not doing much good at all anymore. Also I have developed a strong sensitivity to light in the last few months. Doesn't seem to bother me during the day at work (I do use a computer and work under florescent lights). However, when I go outside I really notice the sensitivity. Also I am finding it next to impossible keeping my eyes open when trying to watch TV. Seems to be worse at night after I've worked all day. I do not know about the FL 41 glasses. Can some of you tell me about that? I was able to pick up a pair of sunshades at the Wal Mart Eye Clinic that can be worn over my regular glasses (which are tinted). These glasses help outside tremendously--they have a "wrap around" feature that is tinted even on the sides. Cost about $25.00. Have not tried wearing them in the house at night. I'm stubborn and am determined that this condition is not going to get the best of me. Is there any encouragement out there?



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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Rosemary McGhar
Posted by MaryNY , Jan 18,2002,10:12 Top of Thread Archive
Hi Rosemary, and welcome to the Bulletin Board. Encouragement? You Bet ! This is the place to be - for understanding, empathy, wisdom, tips, everything! Better than a doctor's office. I'm sure you'll be hearing from lots of people who UNDERSTAND what you're going through, and you sure have the right attitude! I've had BEB for about 15 yrs., had a limited myectomy 3 yrs. ago, and receive Botox shots....and I'm extremely sensitive to the sun. I have FL-41 glasses, that do help. They block a certain kind of rays, I guess,and are a little different than regular sunglasses. I always wear my (dark-tinted) ones outdoors. You can 'phone "Chuck" at (801) 585-7800 in Salt Lake City to ask aout them. Best of luck, and keep posting! Mary



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Re: WELCOME TO THE BOARD ROSEMARY

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Rosemary McGhar
Posted by June in Toronto (June Floyd,June in Toronto), Jan 18,2002,12:03 Top of Thread Archive
Hi Rosemary and welcome to the beb bb. Sorry you have this disease but you have come to the right place for encouragement and more. I've had beb and meige for about 7 years.

As you are working with computers and under fluorescent lights, are you being good to yours eyes and putting LOTS of preservative-free drops in them during the day? You'd also need to do eye exercises (as rest breaks) for them for this kind of job as well. Are you able to wear a visor on the job - that would also help with the lighting. The eyes (and other parts of my body) get tired after a long, hard day at anything - so its to be expected that your eyes would be worse in the evening. Some of us can watch tv (I couldn't for 2 years, now can) and others can't at all - we are all so different in our side effects of this disease and with the botox injections.

I wear Solar Shield wrap-around sunglasses (with sides and top piece) when I'm outside and sometimes (as in the case of extra sun perhaps on a boat) have to wear 2 pairs and I ALWAYS wear a hat, winter and summer with a brim.

Check out the back posts and keep asking questions - we are here to support each other. Best wishes

June in Toronto (beb/meige)




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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Rosemary McGhar
Posted by Sally - in - Idaho , Jan 18,2002,14:19 Top of Thread Archive
Hi Rosemary,

I just want to welcome you to the BB and assure you that there will always be lots of encouragement from the people here. You have been given good tips from the postings above.

Botox is my only medication for BEB at this time. I have the injections every eight weeks and they are effective enough to be worth continuing, but certainly no cure. I do feel that my condition is gradually progressing.

I believe I've read that wearing sun glasses indoors is not recommended because it makes one's eyes more sensitive when going outdoors. I've not yet tried the FL-41s, but hope to one day soon.

Come back often and tell us as much about yourself as you care to.

Sally in North Idaho BEB/Meige




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Re: Sensitivity to light/ Blepheroplasty??/sally

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Sally - in - Idaho
Posted by kathy , Jan 19,2002,05:37 Top of Thread Archive
no you're right sally , you're not supposed to all the time but i have to wear the darker fl41's after my injections til the light sensitivity is not so bad.



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Discussion on Myectomy

Re : Sensitivity to light/ Blepheroplasty?? --- Alice Baum
Posted by Ann Doyle , Jan 17,2002,13:44 Top of Thread Archive
I wish people who have had a myectomy would tell us the pro's and cons. I also wish they would mention their Drs. name and city. Ann Doyle



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Re: Discussion on Myectomy

Re : Discussion on Myectomy --- Ann Doyle
Posted by MaryNY , Jan 17,2002,18:49 Top of Thread Archive
Anne-I traveled from upstate NY to Utah almost 3 yrs. ago to have a limited myectomy by Dr. Anderson, because, in my research, I decided he was the best. I wasn't cured, but helped considerably. I would do it again (only with Dr. Anderson) I still get Botox, but a lower dose. Mary



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Re: Sensitivity to light/ Blepheroplasty??

Re : Sensitivity to light/ Blepheroplasty?? --- Alice Baum
Posted by Carol Brown , Jan 20,2002,17:01 Top of Thread Archive
Hi Alice

I was diagnosed with beb/meige in 1996 (I am 62). I had a partial myectomy with a brow lift a couple of years later. After the surgery, I had lots of trouble with light sensitivity, even more so than before. I think this is common for anyone who has had any type of eye surgery. Florescent lights just about killed me, as well as trying to work on my computer and even reading a book. Finlly, a family member suggested I try photo-grey lenses in my glasses. Boy! what a difference. It settled my eyes down a lot. If you are not familiar with them, they automatically adjust according to the light you're in and turn into sunglasses when the sun is out. Your eye doctor can tell you about them. I hope I have helped you a little anyway.

Carol Brown, Naselle, WA




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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Carol Brown
Posted by Evelyn , Jan 21,2002,23:45 Top of Thread Archive
Your statement about light sensitivity after any eye surgery is surely true for me. Since my eye surgeries this year, I'm almost blinded by bright light. Carol, I've lived in WA most of my life, and I'm so curious where Naselle is.
Evelyn



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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Evelyn
Posted by Carol Brown , Jan 22,2002,15:33 Top of Thread Archive
Hi Evelyn

Naselle is on the coast near Long Beach and that area. We are about 30 minutes from the Astoria bridge. We have only lived here about 6 years, we are originally from Olympia. Naselle is a small town with only one blinking yellow light. It's great! Right now, we're having snow. Uggg!

Carol




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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Carol Brown
Posted by Evelyn , Jan 22,2002,22:23 Top of Thread Archive
Thanks for the info, Carol. We've been down that way when we went to Ilvaco to meet family. We drove over the Astoria bridge because we'd reserved a motel under it. We later decided to go on to Ilwaco instead. Beautiful area. It snowed here today too, but I didn't see it. Guess I looked out at the wrong time. We live in Arlington. It's pretty up here too.
Evelyn



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Re: Sensitivity to light/ Blepheroplasty??

Re : Re: Sensitivity to light/ Blepheroplasty?? --- Carol Brown
Posted by Shirley-Arkansas-USA , Jan 23,2002,17:27 Top of Thread Archive
I just wanted to be the odd man(or woman) out here and say that my light sensitivity did not worsen after my myectomy nor does it worsen after I get Botox. Those two things haven't made any difference with my light sensitivity. Actually, lights bother me more when I am needing my botox. I'm just weird. :-)

Shirley




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