Neuro-Ophthal says I need surgery

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Re: Surgery

Re : Neuro-Ophthal says I need surgery --- coleen dennis
Posted by Moderator-JB ® , Jul 13,2001,23:10		Top of Thread	Archive

Coleen:

Since I haven't had surgery myself, I'm just stating an observation.

If you decide to have surgery, wouldn't it be better to have a Myectomy or partial done at the same time. Those muscles around the eyes are still going to be squeezing after the eyebrows are lifted.

Probably best to talk with others who have had the surgery and see if they are happy with their results. Also be sure you have the very best in the way of an occuplastic surgeon who has done many surgeries. It's a tricky business at best.

Good luck,

Judy

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Re: Surgery

Re : Re: Surgery --- Moderator-JB
Posted by coleen dennis ® , Jul 14,2001,07:28		Top of Thread	Archive

Thanks Judy for the response. I'm pretty sure he said that the eyelids will need doing also but it is up to the surgeon if it is done with the browlift or at a different time.

If anyone else has had a browlift I would certainly like to hear about it. I checked on browlifts on the net and it looks like they may lift the whole forehead up and have the scar at the hairline.

Coleen in PA where the weather is beautiful today.

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Re: Surgery

Re : Re: Surgery --- coleen dennis
Posted by Alan Phair ® , Jul 15,2001,07:15		Top of Thread	Archive

Coleen, as I have told people before, every case is different so I hesitate giving out advice. I can only talk about my experiences and those of others that I know about. Unless you have a very minor case of BEB and the Botox works fine for you then you probably will need more than just a brow lift. My first operation while not a brow lift was what I would call a very limited cosmetic Myectomy. I think I just invented that terminology but the fact is that it only helped cosmetically and did nothing for the squeezing of the muscles. Two years later, I had an extended Limited Myectomy done by Dr. Anderson in Salt Lake city which was a real big help. I had the lower Myectomy done this past March which has not helped as much as the first one did with the upper muscles.

In my case, Botox did not help much at all and the Myectomy to me, was a no brainer. Again, however, each person is differenct. I would contact the BEBRF foundation if you have not already. The best advice I would give you is that if you have a chance to go to the conference next month in Phoenix, do so. You will be able to meet with several of the best doctors in the world for this disease and get a diagnosis free from them. You would then have a pretty good idea about how to proceed.

Anyway, good luck and I hope that a few of the people take time out from their piy party to responde to you. I know that it must be a little frustrating to see fifty responses to that and only a couple to yours. I really did not mean that to be a big dig at pity parties as I have participated in the past and they can be fun but helping out people such as yorself has to come first....Alan

P.S. I am probably going to catch heck from some of the other regulars now.

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Re:Not going to catch "heck" from me

Re : Re: Surgery --- Alan Phair
Posted by Shirley-Arkansas-USA ® , Jul 15,2001,15:42		Top of Thread	Archive

Hi Alan,
You will not catch heck from me. I agree that the serious problems come first and I wish as many people posted to them as the fun things. I do believe that the fun things have their place here, too. The fun things are just a little bit of an outlet in a sometimes not so fun world of dystonia.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Sun, Jul 15, 2001, 15:42:53

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Re: Re:Not going to catch "heck" from me

Re : Re:Not going to catch "heck" from me --- Shirley-Arkansas-USA
Posted by kathy ® , Jul 15,2001,16:34		Top of Thread	Archive

that IS why we are doing this.

kathy who's eyes are somewhat better today, perhaps because of my great party! and also because it's cooler and hazy.

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Re: Surgery - Newbie, w/o heck for you

Re : Re: Surgery --- Alan Phair
Posted by curtis dylan ® , Jul 16,2001,04:00		Top of Thread	Archive

Alan,

I'm new here and I agree with you, what a thread of responses.
However some times things like this happen. Being new to the
board, when I saw all the responses I could not believe some of the
silly ones. I said to myself where is there info on this site
that I can read about surgery for my eyes. I have had Dystonia
for about 15 years. Over those years I have had it slowly spread,
spread all over my entire body. I've had two brain surgeries
and am planning on more. Tried Botox in the late eighties before
it was approved by the FDA. So I am familiar with Dystonia and
some about Blephs. I have only had Blephs for about two years.
I responded well to Botox A from 88 to 90. Then my benefit from
Botox just stopped. My Neuro would only give me 300 units for my
cervical (ST) Dystonia. I went to a doctor in Canada that gave me 700
units and still no response. My sister has blephs and she responds
well to Botox. They checked me for antibodies and I had none.
I recently tried Botox B (Myobloc) for my blephs. It did not help.
So now I am asking for help from ANY one out there to please help
me with the surgery option called Myectomy. I have the brochure on
the Arizona conference. I am on Disability and have a very low income
and no insurance (Don't want to start my own pity party). I would
love and need to go very bad. Does the BEB have any kind of assistance
for people that need to go and need financial help in doing so?
I have been a member of the BEB for 4 years and find the newsletter
of great help and inspiration. Also I have read many articles by
Dr. Jankovic, Dr. Blake and I follow many journals including the
American Journal of Ophthalmology. I also volunteer work as a local
support group helper for elderly people with Parkinsons. I live
in a small town of about 15,000 people.
I'm confused about one thing still. As far as the Myectomy goes. My
readings have suggested to me that Myectomy should/will only be
considered if all other treatments have not worked (oral meds, Botox,
etc...). Although as I read on this site it seems as though most of you
still have Botox after your surgeries. Is this because people here that
have had the surgery and were responding to botox before surgery and
are still getting Botox (less) after surgery - OR - is it a case of
people on here that did not respond to Botox before the surgery but get
benefit now post surgery? Will they simply do the surgery no matter
what your prior treament was or benefits from those prior treatments?
I would really comments on the qualifications for the surgery that
doctors look for (symptoms, past treatments, etc...)
Thank you for allowing me a chance to participate in your group and
I hope we ALL can continue to help each other in ANY way.

Curtis

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Re: Surgery - Newbie, w/o heck for you

Re : Re: Surgery - Newbie, w/o heck for you --- curtis dylan
Posted by Shirley-Arkansas-USA ® , Jul 16,2001,11:13		Top of Thread	Archive

Hi Curtis,
Welcome to the BEB bulletin board. I appreciate your concern about the frivolous stuff that we do. I'm one of the worst but I also try to answer people's serious questions when I can. The funny stuff is good for people at times, also. It does have its place. When I first started posting stuff two years ago on this board, I don't think that I would have appreciated it too much at the time as I was just wanting information and was scared to death as I didn't know anything about the disorder. I feel that the bb needs to meet a variety of needs, though.
Anyway, glad that you are here. I had an upper limited myectomy with ptosis repair and levator tightening or abduction and a little cosmesis work of rearranging of the fat in the eye area to fill in where the muscle was removed. Dr. Richard Anderson of Salt Lake City, Utah did my surgery. I met him at last years BEB conference in Kentucky. I feel that he is the best surgeon for the job. My opinion. He pioneered the surgery and has done over a thousand of them. I have attached a link if you are interested for my post-operative course. My surgery was on April 17. You will have to get through some fluff (I've been on the bb for 2 years and know most everyone) but I do try to let you know in that thread what the surgery was like and what I had done and my recovery. I also posted pictures on May 11 and May 13, 2001 of before and after pictures.

I have had BEB for 2 1/2 years. My major problem was one of apraxia of lid opening. In other words, even though the botox worked to relieve the spasms, I could not get my eyes to open and it was a constant struggle. I did not expect any miracles from the surgery but just some improvement so that I could be more functional. I am also on SS disability. I was unable to read, watch TV, drive or do many household activities. I was having to hold on to my husband whenever we went anywhere as my eyes would be closed a good portion of the time.

I did take medications, Klonopin, Adderall and Benadryl before my surgery to help with my symptoms. Since the surgery I have been able to reduce the dosage, significantly. Things are better for me. I still have to take the medication and I will still have to receive botox injections. Before the surgery I was getting 100 units total for both eyes in the forehead, upper lids, lower lids and temple area. I have gotten one set of injections since my surgery and they were just in the lower lids. (35units). In my upper myectomy, muscle was removed from my upper lids primarily and some at the outer corners of my eyes. I still have some itching (that drives me bonkers, on occasion) minimal amount of swelling and excessive tearing that comes and goes. I do not regret having it done and my apraxia problem was helped.

A myectomy doesn't cure your BEB. It is just a permanent treatment option which requires removal of muscles from the lid area. I will not have to get botox in my upper lids as there is no squeezing muscle there, now. Depending on how much muscle is removed will be the deciding factor as to whether or not you will need botox there again. Some doctors are very conservative and only remove a small amount of muscle and in this case, you will still more than likely need botox in these areas. Dr. Anderson is aggressive in his approach to this and why I went to see him for the surgery.

It would be very helpful to you if you were able to attend the conference in Arizona. You would get the best and most up-to-date information there. I do not know if there is any financial aid available to attend conferences or for the surgery. The BEBRF would be the ones to contact about the conference and you would probably just have to contact the surgeon, if you choose to have this done, and see what sort of arrangements could be made or if they will just accept your insurance coverage.

About your question of criteria for surgery. Surgeons will almost always recommend surgery as that is what they do and they feel that it is the best option. Neurologists (and movement disorder specialists-MDS) will generally recommend non surgical treatment options. I actually see two different Neurologists that are movement disorder specialists (one locally for medication and one out of town for my botox injections)(long story) and both of the doctors recommended that I try the surgery as the botox would not and could not take care of my apraxia problem. Most of the time people that have had a myectomy will still require some botox in certain areas and also possibly medication to help control their symptoms. Everyone is different, though. Since the botox is ineffective for you now, I don't know that it would be helpful after surgery for you or not. You would just have to wait and see.

This has been way to long but hope that it has helped some and answered some of your questions.

Alan has also had the surgery as botox was ineffective for him, too. He may comment some more on this to you.

Shirley in AR.
Just click on the link below and it will take you back to the start of my thread when I came back from surgery. Others have also talked about their surgeries and you could search in the archives for them.

http://www.blepharospasm.org/forums/beb/posts/13051.html

I see that you are from Florida from your author profile. Dr. Patrinely is an excellent surgeon in that state who is also active with the BEBRF and research in the area. You may already be aware of him.

--modified by Shirley-Arkansas-USA at Mon, Jul 16, 2001, 11:18:10

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Re: Surgery and botox

Re : Re: Surgery - Newbie, w/o heck for you --- curtis dylan
Posted by Virginia ® , Jul 16,2001,12:10		Top of Thread	Archive

Hi and welcome to the BB. I had a limited upper eyelid myectomy in November of 2000. The botox dosage and meds were as high as the doctor and I were willing to go and I wasn't getting the kind of help from them that I needed, although the botox did have some effect. I also have apraxia, like Shirley. Since the surgery the botox is being given only where there is still muscle and is effective. The surgeon might have been more aggressive if I had been getting no relief at all from the botox. In my case, the surgeon himself gave me botox twice to be sure that I needed surgery before scheduling the limited myectomy.

Yes, Curtis, we do get off topic, but for many of us the kidding around is therapy. If there is ever anything you would like to ask, please do so. We can get serious when we need to.

Virginia in AL

P.S. Next time you might want to start a new thread so your post doesn't get lost in the middle of some of our wandering.

--modified by Virginia at Mon, Jul 16, 2001, 12:12:54

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Re: Surgery - Newbie, w/o heck for you

Re : Re: Surgery - Newbie, w/o heck for you --- curtis dylan
Posted by Billie Lowe ® (billie lowe,Billie Lowe), Jul 16,2001,12:30		Top of Thread	Archive

Hi Curtis Welcome, I'm new to the board too, and there is a lot of silly stuff on here, but you can always count on someone to answer your questions. It is kine of scary to me having blepharospasms and sometimes laughing and being silly makes me forget all of that for awhile. But then, I tend to deal with life that way sometimes too. I've always trusted the Lord to help me deal with things & it works every time. So forgive us for being silly and trust me, you will find help on this board.
Billie

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Re: Welcome to the Fun House

Re : Re: Surgery - Newbie, w/o heck for you --- curtis dylan
Posted by Sally - in - Idaho ® , Jul 16,2001,14:23		Top of Thread	Archive

Hi Curtis ... Welcome to this Fun House aka Blepharospasm Bulletin Board. I imagine that to newcomers, it does sometimes appear to be a bit like the house of mirrors; but as some have posted, the nonsense is a way of letting ourselves know that we can still be "normal" and don't have to always be dealing with the drastic dystonia symptoms.

On the other hand, if individuals will just clearly start a new post with their serious question, there will quickly be a number of people who snap into their serious modes and try to give helpful answers.

I'm sorry that you are having difficulty in getting relief. I have not had the surgery, and probably won't as I am not a good candidate for surgery; however, it has proven to be helpful to many. Neurontin was no answer for me (zonked me out) and Botox has its ups and downs, but is relatively helpful at this point (two years now of injections every eight weeks).

Good luck.

Sally in North Idaho where it is rainy and cold today.

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Re: Welcome to the Fun House

Re : Re: Welcome to the Fun House --- Sally - in - Idaho
Posted by kathy ® , Jul 19,2001,11:06		Top of Thread	Archive

thanks sally. i am not used to alot of attention and you described the emotional release of us being silly perfectly.

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Re: Neuro-Ophthal says I need surgery

Re : Neuro-Ophthal says I need surgery --- coleen dennis
Posted by Shirley-Arkansas-USA ® , Jul 14,2001,15:25		Top of Thread	Archive

I agree with what Judy has to say. I can't remember how long you have had Blepharospasm but you have just gotten your second set of injections. I'm a bit surprised that surgery has been recommended so early. You don't even know if the botox is going to work well for you or not.
I have had an upper limited myectomy and some cosmetic work done around my eyes. The botox worked to a certain degree for me but I also had an apraxia problem (inability or difficulty opening your eyes)and that is the reason that I had the surgery done.

If you just intend to have a brow lift done and or maybe some of the loose skin removed or tightened around your upper lids and don't intend to have muscle removed that is causing your squeezing, you must realize that any cosmetic improvement you obtain from the surgery is going to be short-lived. The squeezing and pulling of the muscles will continue and soon you will need another brow lift and more tightening of your upper lids. Basically you would have improvement for a time but you would eventually (sometimes rather quickly) get back to your preoperative status.
You also need to be aware that by having only cosmetic surgery in this area that you will continue to need botox in the same area and the injections are much more painful in a now more sensitive and tender area that has been operated on. I've heard this from people in my support group and also from people posting on this bb.

My personal opinion is that If I was going to have any surgery done that it would be a combination of functional (removal of offending muscles) and cosmetic repair. I don't see the point of doing one without the other. If all the offending muscle is removed from the upper lid area, then it will not be necessary to get injections there anymore. Depending on your symptoms, you would then only need injections possibly in your forehead and lower lid area.

If you were just recently diagnosed, I would not jump into surgery at this point. It is a permanent treatment and does not cure your blepharospasm.

And like Judy was saying, do not let anyone operate on you who is not very experienced in doing surgery on patients with blepharospasm. Someone may say that they have done the surgery, but you need to know how many and what success rate he or she has had. The BEBRF would have information on doctors that are very experienced in doing this type surgery. Any good plastic surgeon can do a brow lift on you and possibly a ptosis repair but if the underlying problem is not dealt with, I feel that there is very little point in doing this. It won't last and it will make your botox treatment more painful.

Have the BEBRF send you information on surgery and if you were recently diagnosed, I would wait awhile and find out how things are going to go. A surgeon will always recommend surgery. If you do decide to go ahead and have any of the surgery options, it would be in your best interest to get a list of names of surgeons from the BEBRF and contact them and ask questions.

My first botox doctor was an oculo-plastic surgeon (highly respected in this area) he also suggested different surgical options. But when I questioned him about how long these things would last, he was evasive. When I asked him how many myectomies he had done, he said 2 or 3 in the past 7 years. I found the best surgeon that I could for the procedure that I had done and went with him. His approach was logical and consistent with what I knew. I am not cured and I still have problems but I am happy with the results of my surgery at this point.

This is getting too long so will stop. Ask tons of questions and don't by any means rush into anything. Others have and have not been happy with their results. Do your homework.

Shirley in AR. Who would not hesitate to recommend Dr. Richard Anderson for surgery.

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Re: Neuro-Ophthal says I need surgery

Re : Re: Neuro-Ophthal says I need surgery --- Shirley-Arkansas-USA
Posted by coleen dennis ® , Jul 14,2001,20:27		Top of Thread	Archive

I'm pretty sure that he is not looking at this in a cosmetic way as he talked to me about feeling that I have apraxia and that the brow dropping is due to the blepharospasm that has probably been going on for longer than the 6 months I have noticed it affecting my life. He did speak about doing something with the muscles with the eyelids and had on one of my previous visits talked about the forehead muscles. I should start taking a tape recorder with me as my memory is not that good at times and my son was with me on Wednesday and wasn't paying too much attention that he is able to help me out with all that was said. The surgeon is someone coming into the practice from a local area that my doctor said has a lot of experience. I imagine if he is local I can find out a lot of information about him.

I have had lots of surgery and always look for someone with experience and that I feel comfortable with. I have an HMO and have been fortunate to have good doctors in the past. Two years ago I had an excellent general surgeon for my gallbladder surgery and a biopsy and could call him and ask him who he would recommend if I had to stay in the area with my HMO.

Thanks so much for your support. It is wonderful to have others that have had more experience with this impart their words of wisdom.

Now on to the family tree project that is becoming a real passion.

Take care all.......Coleen

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Re: Neuro-Ophthal says I need surgery

Re : Re: Neuro-Ophthal says I need surgery --- coleen dennis
Posted by Shirley-Arkansas-USA ® , Jul 15,2001,15:35		Top of Thread	Archive

Sorry Coleen, I use my cosmetic surgery term too loosely. It comes from working for an ENT surgeon who also did cosmetic surgery. Some of the things that we are talking about like eyebrow lifts and ptosis repairs are often considered cosmetic although for us with BEB this is often a functional problem. So I apologize for the liberal use of my cosmetic surgery term.

Alan's advice to you was good and his suggestion of attending the upcoming conference an excellent idea and one that I also recommend for anyone considering surgery for BEB. I don't believe that you will receive a better presentation of the facts regarding the surgery anywhere else. And learn of some of the problems that go along with it or mistakes that are made.

I don't mean to be critical of your general surgeon whom I'm sure is an excellent physician but it would be quite unusual for him to be well versed in treatment or surgical options for Blepharospasm or to know of surgeons who are competent in this area. He would probably know of good oculo-plastic surgeons and cosmetic surgeons in your area but that is not a guarantee of expertise with Blepharospasm patients.

Shirley in AR.

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