|
|
|
|||
|
| Is it blaspharospasm |  | ||
| Archive | |||
|
Posted by: mik3211 ® 05/04/2008, 16:18:46 |
My wife used to have twiching of her facial muscles and it was diagnosed as blaspharospasm and she was given botox. The twiching disappeared but now her eyes are closed 90% of the time. Two ophtamologists said she does not have blaspharospasm which contradicts the movement disorder specialist. She is scheduled for another injection with the neurologist next week. I am not sure what I want to do. |
| | | | Current page |
| Replies to this message |
| Re: Is it blaspharospasm | | ||
| Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: plw ® 05/04/2008, 17:09:13 |
I am quoting the beb foundation in beaumont cards. "the term "Blepharospasm" means "involuntary forcible closure of the eyelids." It is out of a person's control. To date there is NO know cause and NO know cure. "Beign means it does not kill and it is not malignant."Essential" is a medical term which means of unknown cause."Blepharo" is a Greek word meaning "eyelid". "Spasm" is involuntary, convulsive contraction of muscles. This is "Benign Essential Blepharospasm(BEB)." I'm no doctor. but My eyes shut,squeez, blink, squint all of the stuff that is in this quote. I would contact this foundation who can give you a list of doctors in your area that are familiar with beb and given botox injections. Don't go to some inexperienced doctor it will cause you more grief believe me we can all tell you horror stories of events by inexperienced doctors. I went to a opthomolgist who diagnosed this but said I would be cured of it within weeks of the botox. Wrong. I went to a neurologist who did lots of illierate things and also wanted to cure me. then to another quack who said I had dry eyes and thats only 3 that I went to when I was diagnosed. Before I went to 2 family doctors, 4 optomologists, and a shrink and no one had a clue what to do. So don't give up. Educate yourself get all the help you can get from this site. There are many people who can help you more than I can. Don't believe the first thing they tell you. finally a happy ending I have a great eye surgeon who was on the beb list. and another question Why do they want to give her botox if they don't think she has it? The dry eyes doctor did that to me and I said I don't think so I am done here. They just want to make money off of you and your wife and that is wrong.Sounds like she has beb to me, and I would get another opinion by someone who knows about beb. I hope it all works out for you and your wife. I know how frustrating this is and is going to be. I had to give up working and drive occasionaly. Tv is torcher along with reading and using the computer and lights at the grocery store I just can't stand it. sometimes when I go to bed my eyes are twitching when they are closed!Sometimes anxiety meds like klonopin and ativan will help some not all of the time. They can make you sleepy, that is the only thing. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: June in Toronto ® 05/04/2008, 21:24:41 |
Welcome to the beb bb but I'm sorry your wife has this problem. You need to find out from the neurologist who gave her the botox injections where the injection sites were and how much botox was given at each site. If her twitching disappeared but her eyes are closed 90% of the time, it sounds like she got the injections in the wrong place. It also sounds like the botox worked for the twitching so something went right. The doctor should be able to direct the injection away from the relevant muscle causing the eyes to be closed so much. A amovement disorder neurologist would seem to be the correct physician to see and I'd hope he/she has given botox injections for beb before. Talk to the doctor about the results and see if changing the sites will help - have your wife write up a daily journal of the effects to discuss with the doct. If in doubt see another movement disorder specialist. Also read ALL you can about the disease - click on BEBRF at the top of the main bb page. best wishes and come back and tell us how it all goes.
June in Toronto (beb/meige over 14 years - at 90 units of botox). Modified by June in Toronto at Sun, May 04, 2008, 21:27:20 |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Re: Is it blaspharospasm -- June in Toronto | Top of thread | Archive | |
|
Posted by: mik3211 ® 05/05/2008, 09:10:05 |
Both movement disorder specialists are with well known medical enters. She has been getting 30 units. But recently she developed a discharge from her eyes. The opthamologist says it is because she does not open her eyes. I also read that blespharospasm can cause dry eyes which does not respond to drops. Anybdy experienced similar symptons.
I am also astounded at the fees that several writers said were charged and the medicare refusal to pay. One of my neurologists charged $500 and $360 or 30 units of Botox. Medicare approved $152 and $157. The other doctor charged $750 and $210 for the Botox. Medicare approved $284 and $158. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: pdb ® 05/05/2008, 11:56:48 |
In answer to your question about dry eye, it is widely reported as a side effect (and sometimes cited as a cause) of bleph. Botox does not do anything for dry eye - in fact in my experience, during parts of the treatment cycle it seems to exacerbate it. Others may have different experience, but that's what happens to me. Again, on the web site there are references to dry eye, and in past postings people have reported various things they have done to lessen the impact. Experimenting with various brands of eye drops may find one that helps more than others. Several people on this board use an oral medication, either TheraTears Nutrition or Bio Tears, with varying results. TheraTears has lots of Omega 3 and like content that's supposed to be generally good for you, and in my case I won't swear it's done anything for dry eye, but I’m sure it has contributed to better cholesterol levels. We're all waiting to hear more about folks experience with Medicare refunds, so your examples are interesting input to that discussion.
Peter |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: pdb ® 05/04/2008, 23:32:18 |
There are a couple of possible situations here, from what I have read and seen reported on this bulletin board. First thing to consider is, did she get ptosis from the injections - i.e. droopy eyelids, which if bad enough would be equivalent to closed eyes. Considerations re ptosis are:
Second, she may be suffering from Apraxia. I won't attempt a definition of Apraxia, but the information on the BEBRF first page can lead you to good discussion and definitions of that. Botox does not necessarily fix Apraxia, but it for most folks does help with the twitching/spasms etc of the eyelids. A consideration with all of this is how long she has had the symptoms. For many patients, the symptoms evolve over the first year or two, then settle down to a fairly steady pattern. If she is new to this then two factors have impact: has it settled down into its steady state? and, are the injection locations and strength right yet? For many patients, getting the injection locations optimized is a trial and error process that takes several rounds of injections, supported by consistent monitoring of the behavior of the eyelids by the patient. The more information the patient can give the medical professional - be thay an opthalmologist, neurologist, movement specialist or whatever, the better. If I were you I would proceed with the botox injections – I assume the last ones were a reasonable time ago, as in 45 to 90 days ago? You do not say what the diagnosis of the contrary opinions was – if they thought it was not Blepharospasm, then what did they think it was? I would ask all of them about Apraxia and what they suggest can be done for that. Good luck, and let us know what happens. Peter |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: bluebird ® 05/05/2008, 07:17:42 |
On the main BEB page you will find a list of state and area directors for your area. Find the list and contact one or more by e-mail or phone. Those people know good doctors in your area and will share good info with you. The doctors you have seen may be good doctors, but you will find that it is important to find a doctor who has lots of experience with blepharospasms. I have a very good opthamologist who did my cataract surgery who is not an expert on blepharospasm. I go to an Occuplastic Surgeon for that. He has many, many patients for Botox. The speciality may not be the main thing, but the experience they have with the disorder. Good luck! You will find that many people on this board have seen numerous doctors. It may take time to find the right one. We cannot be here to diagnose for you, but to give you support and ideas about how to educate yourself. |
| | | | Where am I? Original message Top of thread Current page |
| Re: Is it blaspharospasm | | ||
| Re: Is it blaspharospasm -- mik3211 | Top of thread | Archive | |
|
Posted by: Anita in Ohio ® 05/05/2008, 08:55:23 |
Welcome and you have had previous good response to your question. I hear you saying that your wife had twiching in her facial muscles and was diagnosed with blepharospasm. When spasms are in the facial area, it is known as Meige's Syndrome which I have. I understand some doctors choose not to treat Meige's, but I have received Botox injecton since 1985 for this disorder. Now you mention that her eyes are closed 90% of the time, the spasms may have moved up to the eyes at this point. Blepharospasm symptoms are blinking, spasms clamping, the eyes could burn, hurt and itch and the eyes close and it's difficult to open them. She may need Botox in the eyes too and it may take more than one visit. Apraxia of Eyelid Opening is where the eyelid drops and the eyelid won't go up on it's on free will. Some people have Apraxia and blepharospasm. It's my understanding that some doctors don't kow how to diagnose Apraxia. I recommend that you contatct BEBRF at bebrf@blepharospasm.org or you could contact the District Director that presides over your state. You can find our email addresses by searching our web site. Hang in there and hopefully good results will be found for your wife. Anita Croce, North Central District Director, BEBRF |
| | | | Where am I? Original message Top of thread Current page |
