Considering Limited Myectomy

Posted by Diana Panzarino , Aug 23,2001,18:42   Archive
I recently went to the BEBRF Conference in Scottsdale, Arizona and had the pleasure of meeting and speaking personally with Dr. Anderson. Has anyone from a state other than Utah gone to Dr. Anderson for surgery? How does it work -- the visit I mean. I am located in New Jersey and it would be quite an expense to go to Utah and stay for many days. What can you tell me about the stay, the surgery itself (limited myectomy), the cost if you can share that. Does insurance (Horizon Blue Cross/Blue Shield cover this surgery; how do I find out? How much pain is associated with the surgery and what is the recovery time? Am I asking too many questions? I will check with my neuro-opthomologist in October when I get my next Botox shots. Thanks for any info you can provide. P.S. I am still looking for a new doctor in the Hilton Head, South Carolina area. Thanks. It was great talking to so many of you at the conference.

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Re: Considering Limited Myectomy

Re : Considering Limited Myectomy --- Diana Panzarino
Posted by Shirley-Arkansas-USA , Aug 23,2001,20:25 Top of Thread Archive
Hi Diana,
I was at the conference, also. Wasn't it great? If you were there Sunday morning, I was the one that got up and talked about the bulletin board.
I had an upper limited myectomy by Anderson four months ago. I am from Arkansas. I chose him as I consider him to be the most experienced and best surgeon available for this type surgery. I have an HMO with an Out of Network Option. He was out of network for me.
As I was out of state, I had my neurologist who had recommended the surgery as an option, write a letter to Dr. Anderson telling him my history and problems. I called his office myself and spoke with Susan, who schedules his surgeries. She requested photos of my face and eyes so that they could see how I looked. They don't want you looking your best. You would give Susan your insurance information and after they received my photos, they contacted my insurance for authorization for the surgery. That doesn't let you know how much they will pay, though. He usually does a portion of the surgery that is considered by the insurance companies to be cosmetic. Your insurance will not pay this expense. The cost for this will depend on the individual and what needs to be done and what you want done. A price range for this would be from $2500 to $4000-just an estimate. You won't know exactly until you get there and he sees you. This cosmetic portion has to be paid before the surgery. After they have received authorization from your insurance, they will give you a surgery date. We flew in on a Sunday, my pre-op visit or consultation was Monday and my surgery was on Tuesday morning. He did both eyes so I was bandaged for several days. Bandages came off on Friday morning and we flew back home on Sunday.
Their is a motel that they recommend that is nearby where there is a special rate for Dr. A's patients. The accommodations are more than adequate and have a small kitchen and sofa in them. There are numerous eating places within walking distance. My husband would leave me briefly and get some food and bring it back. We had little walkie-talkies and we talked while he was gone to pick up food.
Motel rates while I was there were $69 for a suite with a queen size bed and sofa that also makes into a bed, kitchen complete with frig and oven and cooking utensils. The two bedroom Penthouses have a Murphy bed downstairs and a King size bed upstairs. Two bathrooms. We opted for the smaller suite which had plenty of room and NO STAIRS. I don't recommend stairs with your eyes bandaged.
Hospital out-patient surgery bill was around $4000. Dr. Anderson's bill will differ from patient to patient and you would just need to call and ask for an estimate.
The surgery takes 1 1/2 hours approximately. I was in recovery for about 30 minutes and then was allowed to go back to the motel with my husband. You are given pain medication to take and Valium or similar drug if you need it. I had a small amount of pain (it felt like it was in the lower lid area) and did take a couple of pain pills the first day. After that it was just my regular medicine and the Valium.
Itching was my worst problem. It is important to keep ice or frozen gel paks over your eyes to keep the swelling down.
Recovery time varies. It will depend on what is done, how quickly you heal and what type of work you do. The bruising was gone in a couple of weeks but the swelling stayed for over a month and is gradually disappearing. I still have some. You are able to get up and about right away, but I was tired and had to rest quite a bit and alternate hot and cold paks for at least a month. I had a lot of excessive tearing which blurred my vision. That is better but still comes and goes.

Do not expect the surgery to cure your BEB. It is a permanent treatment option with varying degrees of results. Go into just expecting some improvement. Some people have it done and don't have to have botox anymore. Most have to continue with botox and medication after the surgery. I have had improvement and I would do it again but I definitely still have BEB and my eyes will still close down. The laser pointers at the conference almost did me in.

Hope this helps
Shirley in AR.

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Re: Considering Limited Myectomy

Re : Considering Limited Myectomy --- Diana Panzarino
Posted by coleen dennis , Aug 24,2001,17:18 Top of Thread Archive
Hi everyone!

I too have been looking into surgery. I haven't posted too much on the BB but have been diagnosed for about 6 months. I have had two sets of Botox that last about 6 weeks. My neuro-ophthalmogist referred me to an ocularplastic (spelling?) that is in with his practice and I saw him on Wednesday. He is familar with Dr. Anderson's work and is going out to see him in October.

This surgeon was discussing with my husband and I doing a lift at the forehead for my drooping eyebrows, removing excess lid and then muscles for the Apraxia. However, when my husband mentioned that I bleed heavily when I have had past surgeries, the surgeon became very concerned because he said the surgery for the removal of the muscle tissue was a surgery that produces a lot of bleeding itself and that there may be the possibility of complications including bleeding into the eyes resulting in blindness. Not a very encouraging possibility.

He felt that he still could do the brows and excess eyelid tissue and help me somewhat but is that really going to help much? He wants me to see a hemotologist to have my blood checked but still sounded like he would be leary about the muscle removal.

I am wondering if the cosmetic surgeries would actually help with the Botox working or would the scarring make it more difficult?

Frankly, the thought of any of the surgery is not sitting well with me at the moment. When he was talking about doing the brow lift at the forehead and moving my hairline up, it reminded me of being scalped. I already have a high forehead and then I had chemo which brought it up higher. My daughter, my hairdresser, was not happy at all with that one! My medical challenges are not just difficult for me. It's share the wealth in this house. Everyone gets to drive Mom around. You know how that is.

Anyway, if anyone has any suggestions for me also, I could surely use them.

Coleen in central PA who would like to go a few years without surgery on one part or another. Still have a lot of parts left.

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Re: Considering Limited Myectomy

Re : Re: Considering Limited Myectomy --- coleen dennis
Posted by Shirley-Arkansas-USA , Aug 24,2001,21:53 Top of Thread Archive
Hi Colleen,
I know that it is a personal decision but if you have only been diagnosed for 6 months and only had two sets of botox, I don't think that you are quite ready for surgery. Give it a little time. The surgery is not a cure. I'm surprised that anyone is recommending surgery to you at this point. An oculoplastic surgeon is going to recommend surgery-that is what he does.
You might want to find a good neurologist that specializes in movement disorders and is very familiar with BEB and giving the injections. If after seeing someone like this and he or she has had time to do a good botox trial and possible some medication and you still aren't seeing any results, then consider it.

If you don't have any muscle removed if you do have surgery and just have the brows worked on and excess upper lid tissue removed, you are going to be back in the same boat within very short order. The spasms will continue and it will hurt more to get your botox because you will have to get them still in sites that you did before and now this area will be tender from the surgery and injecting through scar tissue. The spasms and squeezing will continue and will continue to pull the brows down and stretching the upper lids if the muscle is still there.

I personally wouldn't have the other surgery done if I was not going to have a myectomy done, also. A myectomy should not be entered into lightly as it is permanent and only a treatment option. You don't seem real thrilled about the idea anyway. Don't let a surgeon talk you into it after only two sets of Botox. I would run from that person very quickly.

Just because another oculoplastic surgeon knows of Dr. Anderson doesn't mean that he is an expert at doing myectomies. Ask him how many upper limited myectomies he has done. Not everyone can do this type surgery. I have seen too many people post on this board that they were very disappointed in the results that they got when operated on by someone that hadn't done many.

Give it some time-read all that you can about it-call the foundation for information. They have videos on the surgery for loan that can be sent to you. Get them and look at them. I hate to be negative and I've had the surgery myself by Dr. Anderson and I would do it again in my situation but as far as I am concerned the surgery should be the last option when nothing else will work.

Shirley in AR.

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Re: Considering Limited Myectomy

Re : Considering Limited Myectomy --- Diana Panzarino
Posted by Cynthia , Aug 24,2001,17:36 Top of Thread Archive
No, you are not asking too many questions and you have already received some good answers. I had the surgery in Nov., 2000 and reported on it at a support group meeting (Peoria, IL) in June. I would be glad to send you a copy of that report, either by email or regular mail if you'd like. It includes answers to many of your questions, including my detailed costs. Click on my name above and let me know if that would be helpful.
(Yes, I would do it again.)
Did you get any of Dr. Anderson's handouts describing his procedure? I have a couple of those also, if you'd like.
Welcome to the board!
Cynthia in IL

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Re: Considering Limited Myectomy

Re : Re: Considering Limited Myectomy --- Cynthia
Posted by Joann Humphrey , Aug 24,2001,22:11 Top of Thread Archive
I've been receiving botox injections every 3 months since October '99. Now my neurologist thinks I've gotten antibodies & the botox isn't helping. I may try myobloc B next.
However, I have a question. If one has a limited myectomy I understand one still needs botox every 3 or 4 months. How do the antibodies affect those injections. Wouldn't the antibodies still be present so those injections wouldn't help.

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Re: Considering Limited Myectomy

Re : Re: Considering Limited Myectomy --- Joann Humphrey
Posted by Shirley-Arkansas-USA , Aug 24,2001,22:23 Top of Thread Archive
Hi Joann,
There is a blood test that can be done to check for antibodies. Also, Virginia posted about giving a significant dose of Botox in the forehead muscles to see if it will relax these muscles. Most people don't develop antibodies to the botox. But they can determine this by doing the blood test or the forehead test. I need to look that up in the information that they gave us.
If you do have a limited myectomy, you will probably still need botox in the areas where squeezing muscles remain. If you do have antibodies (which is unlikely) the botox will not work after the surgery either. The antibodies would still be present.

Shirley in AR.

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Re: Considering Limited Myectomy

Re : Re: Considering Limited Myectomy --- Joann Humphrey
Posted by Virginia , Aug 25,2001,13:27 Top of Thread Archive
If the Myobloc doesn't work for you and you are non-responsive to Botox, you may be a candidate for more extensive surgery than just the normal limited upper myectomy. I'm not saying I recommend it - I don't know what a doctor would say. I just think that it might be an option if you truly don't get any help from either botulinum toxin available at the present. I know Dr. A does these upper and lower surgeries separately, so you could see what kind of results you get from just an upper and then decide on the other.

For those who didn't attend the conference and may not know, there is a toll-free number you can call to get someone to research whether myobloc is covered by your insurance for BEB. The number is 1-888-go1call.

Virginia in AL, trying to catch up on yard work not done while I was gone.

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