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Posted by: Peter from Brisbane ® 04/12/2005, 17:44:09 |
Hello Everyone, I was speaking to my doctor about the possibility of have a myectomy done to help me deal with the apraxia I have. He told me that he is very reluctant to recommend this procedure to anyone as it means that subsequent Botox injections are extremely painful as the needle has to pass through scar tissue in the eyelids. Does anyone experience this? Also how successful is the myectomy operation for apraxia? Do any of the Australians on this board know of anyone in this country who is experienced in doing the myectomy?
Peter |
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Posted by: Shirley Barr in New Mexico ® 04/12/2005, 19:43:43 |
Hi Peter,
I had a big problem with apraxia before the surgery. The Botox injections were doing all that they could. They would relieve the tight squeezing spasms for a period of time but the injections did nothing to actually "open" my eyes. So basically, I could get rid of the spasms but my eyes still wouldn't open. The upper limited myectomy did help this. Squeezing muscles were removed in the upper lids and the levator tendon(muscle that is used to open the eye) was shortened and the excess skin was removed from the upper lids. The combination of things allows the eyes to open easier, particulary the levator shortening (or tightening)and removal of extra skin on the upper lid. That levator which runs midline, vertically in the upper lid gets stretched and doesn't work properly to open the eye so the shortening of it and removal of the squeezing muscles helps it to do it's job better. Without removal of the squeezing muscles, even if it is shortened, it would quickly stretch again...so a combination of things needs to be done. Some doctors will recommend a surgical procedure called a Blepharoplasty for BEB. This just removes the excess skin on the lid. This might help for a period of time but it does nothing for the squeezing and over time, you will probably be in the same shape that you were before. And the pain of injections after myectomy...you shouldn't need the injections in the area where the surgery was performed. I don't get injections in my upper lids anymore as those problematic muscles have been removed. I do still get injections at the temple area and at the end of the brow but this is somewhat away from the exact surgical site and they are no more painful than they were before the surgery. This is something that you really need to talk to a surgeon about that will be doing the surgery. All myectomies are not the same as different doctors perform them differently. Even with the same surgeon, differences will be noted as patients have varying problems. My right eye was much worse than my left eye before my surgery and Dr. Anderson was much more aggressive with what he did with that eye and the amount of muscle that was removed. At this point though, some four years later, my left eye is my problem and is much worse than my right in terms of squeezing and apraxia and I'm wondering about going back and letting him work on the left eye again. Nothing is perfect. Why don't you email the foundation and ask them of their knowledge of any surgeons in Australia performing myectomies?
Shirley Modified by Shirley Barr in New Mexico at Wed, Apr 13, 2005, 13:00:58 |
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Posted by: Cynthia ® 04/12/2005, 21:42:41 |
Shirley explained this very well. Subsequent to my myectomy 4-1/2 years ago the botox sites are different and no longer includes the upper eyelid. The surgeon performing the myectomy sent a chart to my neuro-opthamologist recommending the new sites for botox injections. |
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Posted by: marionc ® 04/13/2005, 03:55:43 |
Hi Peter. I'm from NZ not Australia, but was treated for BEB in Brisbane for a while by John Harrison who I found excellent. I had an operation (6 years ago) which was probably a blepheroplasty although it seems to me that what's called a limited myectomy can mean different things to different people. Certainly the operation has made a huge positive difference to me and like many others I have found the botox injections much more effective after the operation than before, although I think also Dr Harrison had a much better understanding of the need to expreriment with injection sites than any of my previous specialists. I went from walking into doors, couldn't keep my eyes open for long enough to get my food from my plate to my mouth etc to being almost normal most of the time. I'm not cured and its still a drain on me and its sometimes worse than others but my life is pretty normal when before the operation it wasn't. I had the operation done in NZ by a plastic surgeon who had never done this before - I got articles and purchased a video from the BEBRF who were more than helpful. As I understand it surgery for BEB is quite uncommon in NZ - or was 6 years ago and Dr Harrison seemed to find it unusual as well, tho he had more knowledge about it than I found in NZ then. As far as whether the injections are painful after the operation, Dr Harrison and my present doctor in Wellington seemd to find the scar tissue a bit difficult but I honestly can't say that there was a great deal of difference in pain levels - my specialist here has learnt to give the injections very gently and I don't find them that bad at all these days. But I think things like pain levels are very individual - maybe I've just got used to it. Like all things about this condition, reactions to the operation are probably as individual as any other treatment including botox. I took a chance and it came out well for me. I look back and wonder if there had been a greater willingness here to experiment with the sites and number of injections I wouldn't have needed the operation but by the tiem I had it I had completley lost muscle tone in my eyelids and had a lot of excess skin so I need something to get rid of that. I would say find out as much as you can before going into it, but don't let stories of pain with injections afterwards put you off - its not necessarily the case. |
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Posted by: Peter from Brisbane ® 04/13/2005, 18:17:48 |
Hi Marion, Thanks for all the info. I am fortunate to be in the care of Dr Harrison too. Based on what you have told me about your experience with Dr H, I am wondering why he is trying to talk me out of eyelid surgery. I will follow up with him on my next Botox appointment in a couple of weeks. Cheers Peter |
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Posted by: marionc ® 04/14/2005, 04:23:12 |
Say hi to Dr Harrison from me - I'm the NZer from Solomon Islands he used to treat. |
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Posted by: richo ® 04/14/2005, 04:32:59 |
Dear Pete, Richo here in Hervey Bay,I was waiting to see how you went. Having talked that you and I have similar situations, I also fronted John H. and he was inclined to put off the partial Myec., but he did send me on to DR. Sullivan, who has performed these ops, he is a close friend or aquaitance of Dr. Andersen in the states and I think he trained with him or gained experience from him. He even said to to hang off and may be try the specs with the rose tint which both you and I have. I dont know that they are fantastic, but I never wore sunnies before but now I never step out without them.I know have a worse time of it than me with your apraxia, but I have had a worse week than I have ever had before. I like a lot of people go up and down like a yoyo,but the op has been on my mind the last week. Elizabeth Foster from the Melbourne support group contacted me in the early days, and she I think had the op some years ago and it transformed her life. The thing is that it is so final. I am due for jabs in may , the botox does the work for the clamps but the apraxia is a different thing altogether. Keep in touch , chin up . I have read that many of the blephs in u.s use a cream which like a local pain deadener which may help if you go ahead.
Cheers mateRicho |
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Posted by: Sally in South Carolina ® 04/13/2005, 12:39:03 |
Hi Peter: I had an upper lid limited myectomy almost a year ago for severe BEB. I have been getting botox shots in my upper lids every 8 weeks since about 2 mos. after the surgery. For me, there is no pain, other than the same pinch, from the shots post-surgery. My shots are not administered into the scar tissue; they are shot into the inner & outer corners of the eyes and several other places around the eyes. Hope this helps. Sally in South Carolina. I do not know how this surgery would work for apraxia, since I didn't have apraxia. |
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Posted by: Shirley Barr in New Mexico ® 04/13/2005, 13:08:04 |
Just thought that I would post this link regarding the myectomy that Dr. Anderson does in case some of you have not seen it. It talks about Apraxia as well. Shirley Related link: http://www.blepharospasm.org/1999anderson.html Modified by Shirley Barr in New Mexico at Wed, Apr 13, 2005, 13:09:49 |
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Posted by: ivyg ® 04/14/2005, 17:09:03 |
Thank you all, for all the information you have posted. I had my last set of injections in March- but still having difficulty as this new doctor was not sure how to dilute the Botox. I gave him the diagramn of the sites to be injected and the amount of units I had, but could not tell him how to dilute-asuming he would know. He is a Gynecologist who has recently gone in the cosmetic line of work. I was hoping this would work for me, but now I know that I need to know how the medication is to be diluted for maximum result. He is the only doctor who has the medication here in Jamaica. I have had BEB for 15 months now, and was treated previously in the USA. Thank you all so much. |
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Posted by: Shirley Barr in New Mexico ® 04/14/2005, 19:02:54 |
This is a link from the www.botox.com site. It has all the "prescribing" information for the doctor. It takes some looking for but the diluting instructions are there in a "table". The information is in PDF format so I was unable to just copy and paste it here.
There is quite a bit of information on the botox.com site. This information supplied in the link is the "package insert" that comes with each vial of botox. Your doctor should have it...it just needs to be read. Hope this helps you. Shirley Related link: http://www.botox.com/site/professionals/prescribing_info/botox.asp |
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Posted by: ivyg ® 04/15/2005, 09:10:18 |
Thank you so much Shirley. This is a great help.
With best wishes to you all. Have a great weekend. Ivy |
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| Dr Tim Sullivan- Brisbane | | ||
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Posted by: Rae ® 04/14/2005, 01:57:52 |
Hi Peter. Dr Tim Sullivan first diagnosed Al's BEB. He does not do Botox so sent Al elsewhere. He said he does the surgery part and that the Botox doc would possibly eventually refer him back. Do not know of anyone who has had it done but would be worth asking. Dr Tim Sullivan is at Terrace Eye Centre 135 Wickam Tce Brisbane Qld 3831 0101. Al & Rae. |
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Posted by: Anita in Ohio ® 04/14/2005, 15:57:21 |
I had the Limited Myectomy for blepharospasm in 1989. I do not have Apraxia. At that time, there wasn't any cream that could be applied to help with those that have scar tissue due to the surgery. Since then, my doctor who did the surgery in Ohio uses the cream on me and we have found that if you leave the cream on for 45 minutes to 1 hr. prior to injections, you can't hardly feel anything. The name of the cream is called Emla Cream or Ela-Max. It's great to have something like this even though I have a high pain tolerance. Anita Croce, North Central District Director, BEBRF |
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Posted by: Peter from Brisbane ® 04/14/2005, 21:52:30 |
Thankyou everyone who has replied. For Rae and Richo - I got an email form Elizabeth Foster from the Melbourne support group which I have pasted below: Yes, there is a doctor here who does the myectomy op as I have had it myself. His name is Dr Alan McNab and he has treated patients here and interstate ones as well who have come to Melbourne for treatment. I found it completely successful but there are some who do not get relief. Dr McNab is in East Melbourne I think you can look him up on the internet I guess. he is very compassionate and I think he does a great job. He has studied under Richard Anderson. I had the op 8 years ago. Elizabeth.
Take care Peter
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