Re: Myectomy Operation |
When Botox and a long list of medications had not helped me for 1 year, I had a partial myectomy in May 2000 also and found my expectations, which were very high, to be quite a let down. I had several good weeks....I couldn't close my eyes, then as I healed the spasms returned and I was as bad as ever by August which was a big disappointment. By Nov. I was so bad I tried the Botox and on that day was much better, but that also began to decline after a few weeks. I have tried a ton of meds and supplements and herbs and holistic treatments. I have been better since the the last Botox, but I'm not sure what I can attribute that to...a) the botox worked some because of the surgery. b) the eyes were better because I found a combination of supplements that help some and may have helped the Botox work some too. or, c)none of the above. At the last support group meeting our guest speaker was a doctor who has treated BEB with surgery long before Botox and now with both. He said something very interesting to me. I told him as crazy as it sounded, it was like every time I thought I had found something(a trick, a med, a treatment, a supplement, surgery, botox) that works a little the BEB seems to find a way to trick my brain and go around what ever is working. He said that is not as crazy as I might think. He said when he first began doing surgery as a resident the surgery was pretty radical for BEB and any thing else to do with the nerves in the face. If you did surgery on a patient who did not have BEB you had to be very careful not to damage the facial nerves, because if you did it was permanent. In patients with BEB you could cut, pull, burn, or remove the nerve and the spasms came back. That is why the surgery is a temporary tool to treat BEB, not a cure. I also told him that when I get Botox the spasms go down...some doctors say well that is just meige, but when the Botox wears off the meige gets better. My meige also was worse after my surgery until Nov. when I got my last Botox.
I am now on a low dose of Klonopin 2 to 3 times a day which was like a miracle the first week. It hasn't worked as well the past 2 weeks, but I have had a tremendous amount of extra stress with a situation with my daughter. Stress always makes my BEB worse. I hope all this helped. This is a weird deal.
Re: Myectomy Operation
My upper myectomy was fairly recent (last Nov.) and so far I have no regrets. I have had botox in the lower lids and it seems to be working for me. Temporary fix or not, I am glad I did it (that's all any treatment is anyway - at least for most people). I don't have the intense squeezing that I did before and I really feel better - not just my eyes. All is not perfect, but it is better. And no, my surgeon (or any other of my doctors) did not recommend not doing it because the BEB might come back. The BEB never went away - no one said the surgery was a cure. It's not a disorder that can be "cured" by eye surgery of any kind. My surgeon just knew that I wasn't getting the relief that I should be from the botox and thought the myectomy was worth a try. And I felt that if there was a chance it would help, I had to try it.
Virginia in AL, belching salmon from the Moistur-eyes supplement - think I'm going to cut back on the dosage.
Re: Myectomy Operation
I have been taking 1 to 2 Moistur Eye caps a day and alternating with taking 1 to 2 Spectra 3 caps a day. I take both with meals. I haven't noticed any aftertaste or indigestion. Maybe it is because I love Salmon and haven't noticed. Both say 3 a day with food, but I don't want to over do it and they both have such good stuff in them that I want to take both, so I thought this might work.
I was taking three (the recommendation is 3 twice a day for the first two weeks) caps a day to start and figured I would cut back to one or two after the first two weeks. I only did it two days. I will cut back to two today. I love salmon, too, and we usually eat it once a week, but I normally don't taste it once the meal is over. I also take other vitamin supplements and don't want to overdo it either, so cutting back makes sense anyway. I made a spread sheet of all the supplements I was taking to get the totals of everything so I would know how much of what I get from supplements. But I don't take into account what I get from food - that's harder since it varies from day to day.
--modified by Virginia at Fri, Feb 23, 2001, 17:54:51