Re: Myectomy with frontalis sling
There are quite a few of us on the BB who have had limited myectomies with varying results. I'm not sure if there are any who post regularly
who have had a frontalis sling. I can provide you with a phone number via email if no one responds about the sling.I had a limited upper eyelid myectomy in Nov. 2000. I believe it has helped, but it is definitely not a cure. I still get botox injections and take medication. It is important for him to do plenty of research on surgeons to make sure the one he selects has done quite a few of them with good outcomes. Also, the surgeons should give him people to contact who have had the surgery. I did that before mine and it was a big help to be able to talk to people who had been patients of the doctor who was doing my surgery. The BEBRF has literature on the surgeries, videos he can borrow, and a list of doctors who perform these operations. Your friend most likely has apraxia of eyelid opening, which is why a doctor would recommend the frontalis sling. Botox and meds don't usually help with apraxia. Wish him the best from us on the BB and let us know how he does. Virginia in AL
--modified by Virginia at Fri, Jan 04, 2002, 14:45:25
Re: Myectomy with frontal sling
Dear Carrie:I see that Virginia already gave you a reply. I would agree with her that if your friend decides to have Myectomy surgery, he must choose someone whohas plenty of experience in this field. The name I hear mentioned most often in the United States is Dr. Richard Anderson. We in Canada have a young doctor in Ottawa by the name of Dr. David Jordan who apparently did some studying under Dr. Anderson but is now an outstanding doctor as an Oculoplastic Surgeon and Opthamologist in his own right. In fact, he was recommended to me by the Mayo clinic because of his expertise and because our Canadian dollar is so low in value compared to the U.S. dollar that our governments in Canada are not overly excited to send patients to the States for surgery. In addition, Dr. Jordan is a true professional and gentleman besides. I had a full upper Myectomy and Levator Advancement done by Dr. Jordan in May of 1998 because of my Blepharospasm and Aprixia and after 5 years of not being able to drive, I can now drive for a couple of hours without too much difficulty since March 12th, 2001. I am 55 years old and Blepharospasm came to me as a nasty visitor in 1996. I was told that I should not try surgery but many people who were not familiar with Blepharospasm equated surgery with Selective Denervation which is trying to correct the problem by brain surgery. The Myectomy operation is less intrusive to the body by removing eyelid muscles from slits above the eyebrows and in my case meant that I do not have to take any Botox (Actually, none of the Botox treatments I tried worked for me). Besides, it seems that the patients who only have a limited Myectomy may still need to take a small amount of Botox whereas those who have had a full Myectomy did not require any Botox afterwards. I wish to make it very clear that because the Myectomy operation gave me some badly needed relief in terms of eyelid closing, each person is different and what worked for me may not work for someone else. I am still not back at work because the Oramandibular Dystonia which I had in my face, throat, neck and jaws became much more aggressive after the operation, however, I have a feeling that this would have happened even if I did not have the Myectomy operation. The medication I am taking for this has helped but has also brought side effects such as short term memory loss, etc. which do not allow me to go back to work. Getting back to Dr. Jordan's
work with the eyes, the Myectomy operation has given me a new lease on life. The Dystonia Foundation has told me that they are trying to get up to speed on Myectomy operations because in the past, the pamphlets, etc from the Foundation discouraged patients from trying surgery but they were referring to a different type of surgery. (By making this point, I am not knocking the Dystonia Foundation because their staff were so helpful to me but I was really pleased to have them tell me that they were going to get up to speed on Myectomies which I took as meaning they are open to advise patients to search out new ideas and new treatments). Again, I point out that the Myectomy operation may not be a cure all but for me, it has made quite a difference in my life even though I cannot work and am still suffering from the side effects of the medication for my other Dystonia. Please advise if I can be of any further assistance. Marcellin Chiasson, Port Hawkesbury, Nova Scotia, Canada
TEL: 902-625-1811
TEL: 902-625-1811 Edit
Re: Myectomy with frontal sling
What meds do you take for the oramandibular dystonia? I am currently on klonopin as well as botox for the beb and jaw.
Kelly in Dallas, Tx (always looking for something better)
Re: Myectomy with frontal sling
Dear Kelly in Dallas:The medication I am taking for my Oramandibular is:
Clonazepam (Rivotril)-one pill of 2 mg at morning, supper and bedtime making a daily total dosage of 6 mg.
Procyclinde (Kemadrin)- one pill of 2.5 mg at breakfast, lunch and supper making a daily total of 7.5 mg. For both of them, my newrologist got me to start gradually and built the dosage over a period of time. I believe that if one were to stop taking them, you would have to begin the withdrawal gradually as well. I have been on these for several years now and they have really helped my Oramandibular Dystonia. They did not do anything for my Blepharospasm which is why I needed the surgery. Hope the above information is of assistance to you. As I always do, I warn people that what helped me may not help someone else and in each case, it is something you must discuss with your Neurologist before trying. Marcellin Chiasson in Nova Scotia, Canada
Re: Myectomy with frontal sling
The klonopin that I mentioned is clonazepam but I only take .5mg a day. It makes me drowsy and my daughters are 3 and 6 so resting isn't an option! I know a couple of patients who get Parsitan (only available in Canada) and I was thinking of trying that. I'll have to check into the other med you mentioned as well. I clench my teeth ALOT and my throat spasms - sometimes worse than others causing me to choke. Thanks for the info.
Kelly in Dallas
Re: Myectomy with frontal sling
is the frontalis sling the same thing as a blepharasty?
Re: Myectomy with frontal sling
Kathy:
I am not familiar with blepharasty so I cannot answer your question.I believe you are right in that Clonazepam is also known as Klonopin as well as Rivotril. Marcellin Chiasson
Frontalis sling
The following is a quote from the BEBRF site info on apraxia:"The frontalis muscle is the forehead muscle that raises the eyebrows. In a frontalis sling, the frontalis is used to raise the eyelids by running a material from this muscle into the eyelids. We have recently found that a thick Gore-Tex suture is the best material available for frontalis suspensions in apraxia of lid opening. This suture material is readily obtainable and allows vascular ingrowth as opposed to other synthetic materials. Fascia lata, or tendons from elsewhere in the body, can also be used for frontalis suspension, but they require an additional surgical site for obtaining this material and they are not as easily adjustable if the patient's eyes are open too much or do not close adequately after the surgery." A blepharoplasty is the removal of excess baggage from the eyelids, often done just as a cosmetic procedure (but not always - there can be sound medical reasons for doing it). I only know two people who have had a frontalis sling done. One swears by it, the other had it reversed. Like so many things about this condition, what works for one ... you know the rest. Virginia in North AL, where we missed the snow last week, but may get some tonight.
Re: Frontalis sling
thanks. so actually the frontalis sling can be considered one form of treatment for beb and is reversible.kathy, whose eyes are still doing great at almost 6 weeks and is afraid to talk about it for fear they might get worse.
Re: Frontalis sling
It is a treatment for apraxia. It isn't done to help the spasms.
Re: Frontalis sling
okay , thanks. so it is done for those with clonic closures; the ones where your eyes just close and won't open.
Re: Frontalis sling
Hi my mother Wilma Pelham has had Blepharospasm for 3 years now and i have been on this borad before so hi to everyone..... She has been getting the botox injection's and they have not done any good at all. Infact she has gotten worse. Myself i think she has apraxia of the eyelids. Everything fits in place with her symthoms. Does anyone know of a good site for Apraxia and for the Myectomy and also the frontail sling . And to i would like to know has anyone on this borad have had this done. Thank you so much
Kathy, Wilma daughter
Re: Myectomy with frontal sling
Dear CarrieI had a full upper Myectomy and Levator Advancement done by a Dr. David Jordan of Ottawa, Canada, in May of 1998 because of my Blepharospasm and Aprixia and after 5 years of not being able to drive, I can now drive for a couple of hours without too much difficulty since March 12th, 2001. I am 55 years old and Blepharospasm came to me as a nasty visitor in 1996. I was told that I should not try surgery but many people who
were not familiar with Blepharospasm equated surgery with Selective Denervation which is trying to correct the problem by brain surgery. The Myectomy operation is less intrusive to the body by removing eyelid muscles from slits above the eyebrows and in my case meant that I do not have to take any Botox (Actually, none of the Botox treatments I tried worked for me). Besides, it seems that the patients who only have a limited Myectomy may still need to take a small amount of Botox whereas
those who have had a full Myectomy did not require any Botox afterwards. I wish to make it very clear that because the Myectomy operation gave me some badly needed relief in terms of eyelid closing, each person is different and what worked for me may not work for someone else. I am still not back at work because the Oramandibular Dystonia which I had in my face, throat, neck and jaws became much more aggressive after the operation, however, I have a feeling that this would have happened even
if I did not have the Myectomy operation. The medication I am taking for this (Clonazepam and Kemadrin) has helped but has also brought side effects such as short term memory loss, etc. which does not allow me to go back to work. Getting back to Dr. Jordan's work with the eyes, the Myectomy operation has given me a new lease on life. The Dystonia Foundation has told me that they are trying to get up to speed on Myectomy operations because in the past, the pamphlets, etc from the Foundation discouraged patients from trying surgery but they were referring to a different type of surgery. (By making this point, I am not knocking the Dystonia Foundation because their staff were so helpful to me but I was really pleased to have them tell me that they were going to get up to speed on Myectomies which I took as meaning they are open to advise patients to search out new ideas and new treatments). Again, I point out that the Myectomy operation may not be a cure all but for me, it has made quite a difference in my life even though I cannot work and am still suffering from the side effects of the medication for my other Dystonia. For American patients, I hear that Dr. Richard Anderson is the expert and his name and address can be obtained from the Blepharospasm Foundation. If I can be of further assistance,do not hesitate to contact me. Marcellin Chiasson, Port Hawkesbury, Nova Scotia, Canada
TEL: 902-625-1811
Re: Myectomy with frontal sling
Thank you very much for all the information. Mom has had a real terrible time with this. The Doctor is giving her the highest dose's he can but there is no change. I have read about Ataxia and it does sound like her very much. The doctor she is going to is in Los Angeles California and he is rated as being one of the top Doctors for blepharospasm.and etc. He said he would refer her to a top notch Doctor that has done this kind of Surgery. So we will see when we talk to him. Rather they give her a full Myectomy or a partial at this time i don't know. We are suppose to go see him in Febuary. Mom is also taking Klonipin. She also has the side effect of forgetting things. Thats why i go with her to the doctors because she gets confused sometimes. She is 69 years old. She has had this disease for 3 years now. First it started off with Blepharospasm then she got Meige Syndrom and also Oramdibular and a slight case of Torticolie (sp) She would love to get on this borad but she can not keep her eye's open long enough to even type in anything so i do it for her. Well thank you very much for all the info . I will read this for her
Thank you again
Kathy
Re: Myectomy with frontal sling
Dear Kathy:The symptoms you described experienced by your mother sure sounded familiar. As I mentioned previously, what provided relief for me may or may not help another person. I can tell you that before I had the Myectomy done in 1998, I solicited information from every person who had had the operation done. I cannot remember one person who had the operation who told me that the operation did not help, some more than others. I cannot tell you that the success I have had with it will work the same way for your mother. All I can say is how it helped me. After the oeration, my Oramandibular Dystonia got more aggressive and that is when the Neurologist in Ottawa added the Kemadrin to my Clonazepam. I would say it took a couple of years of slow progress to put me in a position where I could drive my car again. Please extend my best wishes to your mom and tell her tohang in there. If Botox and Medications fail, then the decision to proceed to a Myectomy becomes hers and only she can make that decision. My suggestion is to gather as much information from patients who have had the operation and if she decides to proceed to have the operation done, then she must choose a surgeon who has tons of experience and a good record dealing with the operation. God Bless. Marcellin Chiasson, Nova Scotia,Canada
Re: Myectomy with frontal sling
Thank you again and yes that is what we will do. I am calling the doctor tommarow and see if we can't get an appointment earlier and get mor info on this. I am surfing the net now to see about others who has had this done. This doctor that Dr. Richard Green said was one of the best first i am going to see just how many he has operated on before mom says ok to this. Their is a doctor in Utah that has done this kind of surgery many times infact he was he the phamlet that the dystonia reseaseach foundation sends out. So i wish my mom would look more into his direction but with insurance it is kind of hard. But i will talk to Dr. Green first about it and see what he may do. Well thank you again for all your help.
Kathy from California small town of Delano
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