Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Hi Diana,Dr.Anderson did my upper limited myectomy on April 17, of this year. so I am about 5 months post-op. My main reason for doing it was to help my apraxia problem. Botox would stop the squeezing but I still couldn't get my eyes open. Recovery times vary. I was told that I could expect improvement up to a year following the surgery. Even at five months, I still feel that I am healing and recovering. So, recovery time varies as to how you mean it. The bruising only lasts a couple of weeks. Swelling can go on for months. Most of mine is gone, now. I still have periodic bouts of severe itching around my eyes and forehead. My forehead to my scalp still feels numb and strange but is not painful. I still have periodic problems with excessive tearing. This particular side-effect was the worst for me and is just now getting better. The surgery itself was not very painful. I had minimal discomfort afterwards. You are able to be up and around fairly soon after the surgery. He does keep your eyes bandaged from 2-4 days. I was able to do pretty much anything I wanted to after the bandages were off (within limits). I was tired and I needed to rest my eyes frequently. For weeks to months, I was alternating cool paks with warm, moist heat for the swelling and just to help with the healing around my eyes. I would do it again. I have no regrets. I knew what to expect and what not to expect. It is not a cure. I was looking for improvement of my symptoms and help with the apraxia. I got that. I still have Blepharospasm and my eyes will still shut down on me. I still have to get botox but not as much and not in the same places. I still have to take medication for help with the squeezing. I was not very functional before the myectomy. Just for brief periods through the day. I am much more functional now but still am not driving nor could I go back to work. I still have difficulty reading but not as much. I expect that I am somewhere between 30 and 50 percent better depending on the day of the week. My eyes do open easier but they still want to close. My brain is still telling them to close. I have posted a link below to when I came back from my surgery and started posting about it. I also posted pictures during this time.
Several others on the bb have had surgery by Dr. Anderson and Dr. Patrinely and Dr. Dutton. Hopefully they will post too. We all get varying degrees of results. Virginia and I both had surgery by different doctors and I believe that we both had difficulty at the conference at times with the lighting.
Of utmost importance is to not expect too much or that the surgery is going to make the blepharospasm go away. It will not do that. I don't believe that I would have had the surgery at this time, anyway, if it had not been for the apraxia problem. Hopes this helps some. Ask anything you like. Shirley in AR. http://www.blepharospasm.org/forums/beb/archive/13051.html#13051
--modified by Shirley-Arkansas-USA at Mon, Sep 10, 2001, 17:54:34
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Inside and outside lighting are both a problem for me. I don't know of anything that helps, other than several good pairs of sunglasses. One of the doctors that I saw said that some antibiotic drops that his patients (he was an ocular plastic surgeon) used after surgery would sometimes reduce photophobia. I tried a couple and they didn't make any difference for me. One burned so badly, I wouldn't have used it even if it had helped.Virginia in AL
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Hi Diana, I also had the upper limited myectomy by Dr. Anderson in Dec. of 1999.As shirley has written, mine was about the same. I also had apraxia, and severe dry eyes,which was my main problem. I would say that my surgery was quite successful.I take no medications nor have I had Botox since the myectomy. Everyone does not get the same results, and I feel Like I might be one of the ones that has been helped much. I still have Blepharospasm but, not to the degree I was before surgery.Still very sensitive to lights ,with some spasms in lower lids. I can drive ,and do most every day.
! My life is so much better since having the myectomy,and the numbness in forehead has finally gone too. That is not bad, if you can see better!
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
To answer your questions, I had the surgery in Nov., 2000 because Botox just wasn't working for me anymore. Though not a cure, the improvement was worth it. As for recovery, I was back to my regular activities about 2-3 weeks after arriving home, though there was still some swelling and bruising (used cover stick for that). I would do it again. I have a longer report that I gave at one of our support group meetings that I would be glad to send to you or email to you if you'd like more info. It also includes the costs incurred.
Be sure to let us know if we can be of any further help.
Cynthia in IL
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Dear Cynthia,
Thank you for the very informative reply you sent. I certainly would appreciate your letting me know what the cost incurred were. I do have medical insurance. Another concern I have is, is there a long wait to be scheduled for the surgery after I decided to do it? I will be retiring in March 2002 and should have it done before my medical insurance changes. If you feel more comfortable you can send me a private e-mail. Thanks so much for your help.Diana Panzarino
dpanz@netzero.net
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
I haven't had a myectomy yet, but did inquire. I was told it would be just a 2 or 3 week wait before one could get in.
Joann in ARK
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
I thinking seriously about a partial myectomy in Salt Lake City within the next few months.
Can anyone on BB speak to having both eyes done within three days as compared to having one done on a Thursday and the other one done the following Tuesday?
Also, where is the best place to stay in SLC which is close to the Dr. Anderson's office (hopsital??) with easy access to the airport?
Any insights into costs of surgery, motel rooms, etc. would be helpful.
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
First question of mine. Did you attend the conference and our bb lunch? There was somebody there that I didn't get their name and I have a picture of them. Was that you?I had an upper limited myectomy by Dr. Anderson about 6 months ago. I had both eyes done at the same time. They wanted me to do them one at a time. I think that they had a lady fall and some of the people that they have done have had difficulty being blind for 3-4 days. That is not exactly the story that they will give you, though. When they initially were trying to set me up for the surgery, it was going to work out that I would have to be out there about two weeks. If persistent, they will do both eyes on the same day. I didn't find it that difficult to be blind for the few days. You just have to have someone with you. If you can spend the additional time out there, it might be easier to have the eyes done on two different occasions. I personally wouldn't opt for it. Anesthesia twice also. I'm sure that the bill will be higher if done separately or at least the hospital and anesthesia part will be.
There is also the little fact that if you are seeing out of one eye, the other eye that is covered is also moving around like your seeing eye is even though it can't see. The movement is still there. When both eyes are covered simultaneously, there is far less movement so if they are doing this from a healing standpoint, I don't buy it.
I personally think that it is just a matter of convenience for the person having the surgery so that they can see to get around. The Chase Suite Hotel is generally where his patients stay from out of town. They have a van and they will pick you up from the airport and shuttle you around to your doctor appointment and your surgery. There are plenty of places to get take out around the motel within easy walking distance that whoever stays with you will be able to pick up food and bring it back to the motel. A couple of those little walkie talkies come in real handy during this time. My husband and I used them and would talk while he went to get food. This particular motel has a free breakfast buffet and complimentary evening meals Monday through Thursday (or they did). Our studio room was $69 per day and had a queen size bed, sofa that makes out into a bed, large bathroom area, fireplace and kitchen with refrigerator, dishwasher, stove, utensils-the works. Not at all bad for the price. The motel is very close to Dr. Anderson's office and to the hospital where he does the surgery. Total cost of surgery and hospital bill was approximately $20.000. Insurance pays varying amounts. The cosmetic portion will have to be paid upfront or charged on a charge card and this will vary from patient to patient depending on what he does. The total charge will also vary depending on what you have done and is just an approximate range. I'd do it again in a heartbeat. Stock up on cold paks. Pizza can be eaten without eyesight and is the closest fast food place. Ice cream cones also are great comfort foods and can be eaten very easily without being able to see. These things and Valium will get you through it without much difficulty. :-)
Email me if you would like. Shirley in AR.
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Hi folks:After all the conventional treatments failed, I started looking into the surgery aspect. I was informed that we, in Canada, had a young Oculoplastic surgeon by the name of Dr. David jordan who studied under Dr. Anderson and was as good or beter that any of the doctors in the U.S. He apparently has a certificate onthe wall stating thathe is rated among thetop 25 best Eye Surgeons in the U.S. and Canada. He works out of the Ottawa General Hospital in Ottawa, Ontario, Canada. I had been getting a lot of my information from the Dystonia Bulletin Board and for Dystonia patients who are not familiar with Blepharospasm, to them, surgery means Selective Denervation. I even attended an International Symposium on Dystonia in Victoria, British Columbia, Canada, and in the group covering Blepharospasm, the "expert" doctors did not refer to Myectomy surgery. To them, surgery meant Selective Denervation because I do not believe they were familiar with the Myectomy surgery. It is no wonder that they were advocating that anyone with Blepharospasm stay away from surgery. It is no wonder that the Head Office of the Dystonia Foundation was saying the same thing. Once I got involved with the Dystonia Foundation, I pointed this out to them and their leaders admitted that they would have to "get up to speed" on Myectomy operations and so the following year, they put on a Symposium in Fredericton, New Brunswick, and as part of the program, they had Dr. Jordan as one of their guest speakers so they are changing their information on surgery for Blepharospasm patients. I must say that I owe a lot to the Dystonia Foundation and especially to their staff who were so helpful to me. Like any other organization, there are some within the organization with whom I disagreed because in their opinion, Fundraising was the number one priority to do research to find a cure whereas I felt that the patients had immediate medical and emotional needs which could not wait until a cure is found. The example that I use is my own when I had to hang on to the wall to get to the bathroom, fundraising was not my number one priority. Now that I am feeling better and can open my eyes, I don't mind doing my small part and so my wife and I have been Fundraising since last week which involves the media, going door to door canvassing businesses, writing letter to friends and orgnizations and even sitting out in front of the Liquor Store on Saturday afternoon with tons of pamphlets I received from the Dystonia Foundation. The Dystonia Foundation has people who have a passion for Fundraising and God Bless them for that. Personally, I dislike Fundraising but realize that if EACH one of us don't do our part, then it won't get done and the cure we dream of will only come when we are long gone from this earth. I had a full upper Myectomy and Aprixia surgery done on May 26th, 1998 and it took me up to March 12th of 2001 to start driving again. I was so convinced that surgery was the only avenue left for me that I was prepared to sign a waiver of liability in favour of Dr. Jordan and therefore asked him to do the consultation and surgery all in the one trip. I have never regretted my decision. I am still not working because after the operation, my Oramandibular Dystonia got more aggressive and so the medication that I am taking for that produces, among other things, short term memory loss. Since I previously worked for a law firm, I could not go back to my job. As everyone knows, what works for one patient does not necessarily work for another patient but for me, Dr. Jordan is an angel who gave me a new lease on life. Myrecovery time was much longer than normal, however, I was prepared to accept what the good Lord had in mind for me. THERE CERTAINLY IS POWER IN PRAYER and I thank all those who prayed for my recovery. Where the American dollar is worth twice the value of our Canadian dollar, any one of you from the U.S. who is not getting satisfaction from the Botox might consider coming to Canada to have Dr.Jordan examine you and give you his advice. If he suggests surgery, I would recommend it. I appreciate that it has only been 3 and a half years since my operation, however, Dr. Jordan's operation gave me the chance to see and play with my first grandchild. Marcellin Chiasson, Port Hawkesbury, Nova Scotia, Canada
Re: Partial Myectomy and/or Apraxia Surgery/for Nikki
Hi Nikki,I met you & Rose at the BEB Conference. I have a picture of you two if you want me to e-mail it to you. You can send me your e-mail address and I'll send the picture and I won't give your address to anyone without your permission. Shirley taught me that! Anyway, hope you are doing ok. It sure was nice meeting both of you. COme on, don't be a lurker, you can post. Dee in OR
--modified by Dee in OR at Sun, Oct 14, 2001, 18:41:37
Re: Partial Myectomy and/or Apraxia Surgery by Dr. Anderson
Diana - I had a limited myectomy done by Dr. Anderson two years ago.I chose him and flew from upstate New York to Utah, because I heard that he was the most experienced, and the best. After getting Botox shots for about 5 years, I wanted to see if the surgery would help, because I wasn't getting a lot of relief. It did help, and I would do it again. As Shirley said, it is not a cure. I am now getting the same dose of Botox that I received before, but I have it every 8 weeks, and it works better. I can drive, read, almost anything, but I am extrememly sensitive to the sun or bright lights. Getting FL-41 coating on my prescription eyeglasses helps that some. After all this time, I still have a slight numbness in my forehead (only when I'm kissed!) but I think my recovery was much faster and easier than Shirley's. I also take .5 mg. of clonazepam 3X a day. I think one of the best results was the "cosmetic"....removing whatever it was that gave me drooping eyelids. That helps to keep my eyes open. Mary
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