Limited Myectomy update


Posted by Joann Humphrey , Feb 24,2002,18:40   Archive
Per Joanne M request I'll give you an update. I'm feeling good, no depression, forehead & eyebrows are very tender when touched. I can keep my eyes open, which is the best part, & I drive again. read & watch TV too. I've seen the neurologist & he set an appt. for March 20 for botox injections. I'm doing some blinking, nose squeezing, & my upper lip pulls up. So I'll get injections in different places than prior to the myectomy.
I was using an eye mask at night, but quit that. With all the ointment (GenTeal), I used the mask with a folded kleenex next to my eyes, but then I got blepharitis. I'm rid of the blepharitis now, but still use hot packs a couple of times a day, & occasionally I get up in the night to wash the eyelids, use a hotpack for a few minutes & then add more ointment or eyedrops. I'm starting to work on giving bridge lessons again. I don't plan to play however, as I find it too stressful & then the blinking & upper lip act up. My eyes are not dry, only use drops a couple of times a day. I still use the rose colored glasses all the time, with sunglasses over them when outdoors, or driving. I do take Clonazepam 3 times a day.
Joann in Ft Smith, AR

--modified by Joann Humphrey at Sun, Feb 24, 2002, 21:33:33




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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by June in Toronto (June Floyd,June in Toronto), Feb 25,2002,07:18 Top of Thread Archive
Good to hear from you, Joann, and thanks for the update on your myectomy surgery. Driving, watchng tv and reading again - sounds good so far and perhaps you'll get even more help with your next set of botox injections.
Touching our eyes as often as we do with putting in drops, etc, gives us blepharitis at times - its a pain isn't it? I use a washable cloth under my night mask, wash my eyelids at least every morning and it helps a lot.
Don't get too stressed out with those bridge lessons. I remember playing progressive bridge and never sleeping the same night, going over and over my hands the whole night long! I haven't played in a long time either but I loved the game.

Continue getting better and better and keep in touch, best wishes

June in Toronto(beb/meige)




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Re: Limited Myectomy update/June

Re : Re: Limited Myectomy update --- June in Toronto
Posted by kathy , Feb 25,2002,09:15 Top of Thread Archive
I used to play also. It's a hard but very interesting game. So Joann is good enough to teach it.



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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by kathy , Feb 25,2002,09:12 Top of Thread Archive
You sound like you are doing great in a short period of time! I'm very happy for you.



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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by Joanne Matuzas , Feb 25,2002,16:07 Top of Thread Archive
Thanks so much for the update, Joann. Shirley spoiled me with info
on the BB and I am keeping a file for future reference. Sounds like you
are doing well. Driving, reading and watching tv sounds great!!
Hopefully, the injections in the other areas will relieve the other
spasming you mention. And, glad to hear about the bridge lessons--I'm
not sure I would have the patience for that game but may give it a
whirl if not now, in my retirement days!!

Take care and thanks again. Joanne M. San Diego, CA




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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Joanne Matuzas
Posted by catherine pender , Feb 25,2002,22:26 Top of Thread Archive
Joann

Glad to hear you are doing well. I took up bridge lessons while I while I was in denial about my problem. It seem to take my mind off things for a while because I had to concentrate so much. I did have some very hard times and sometimes had to hold my eyes open, but since the surgery I can actually play at a club. I also found a site on the computer so I can play when I feel like it. My mom plays on the zone too so we can play together. The site is MSN Gaming Zone. There are all different kinds of games to play if anyone can stand the computer for any length of time. It help passes the time when you feel house bound and if you only feel like playing a couple of hands thats ok.
Would love to see you there sometime.


Catherine in Calgary who is not very good a bridge but loves the challenge and is addicted to the zone!




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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by R Elias , Feb 25,2002,23:27 Top of Thread Archive
Joann, Hi, this is Lisa, Rolando's wife. It's good to hear how you are doing now. I was wondering if you also have any form of dystonia in addition to the blepharospasm. I'm wondering because we had asked Rolando's neurologist to request a referral to have a myectomy done. He denied our request, stating that because of the type of dystonia Rolando has, rather than only having blepharospasm, it would not work for him. The reasons being that the dystonia would possibly become more aggressive in another area, such as the back or neck. Also, that it may re-route itself back to the eyes and make them worse. He feels it is a good procedure, but only if your problems are limited to blepharospasm. I am trying to find out if anyone with dystonia in addition to the blepharospasm has ever had any type of myectomy. Also, does ptosis ever go away? Or does it need to be taken care of surgically? Rolando has had a severe case of it for awhile now. I would appreciate any replies. Thanks and God bless you. --Lisa



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Re: Surgery, Dystonia, and Ptosis/Lisa

Re : Re: Limited Myectomy update --- R Elias
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Feb 26,2002,07:19 Top of Thread Archive
this is a very good question and I'm sure others will reply. I think there is one man who is pretty informative about this.
How long has he had the ptosis. For me it has been only a temporary conditon after my injections, but it is very frustrating.

--modified by Kathy in Atlanta at Tue, Feb 26, 2002, 07:20:09




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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- R Elias
Posted by Joann Humphrey , Feb 26,2002,20:21 Top of Thread Archive
R Elias - I may have meige, as my upper lip & nose squeeze at times. Also my shoulders hurt & ache a lot (Dr. says it's arthritis). I really don't know if this is a form of dystonia or not. Also if I get too stressed, my breathing is different, & I partially lose my voice. I'm still happy with the myectomy as I can do things I couldn't before, drive, read, watch TV.
Joann In Cold Ark.



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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Joann Humphrey
Posted by RITA SILVER , Feb 27,2002,10:15 Top of Thread Archive
I HAD A UPPER AND LOWER MYECTOMY WITH DR ANDERSON,6 AND 3YEARS AGO. I ALSO CAN READ,DRIVE AND DO WELL WHEN I AM BUSY. SINCE THE MYECTOMIES I NOW HAVE MEIGE AS MY UPPER LIP AND NOSE TWICHES. I NOW HAVE OTHER DYSTONIA PROBLEMS WITH MY VOICE GETTING LOWER AND IF I NEEDING BOTOX FOR MY
MEIGE. MY SHOULDER AND NECK ARE INVOLVED AND I AM UNABLE TO SPEAK.
I HAVE BEEN ON KLON0PIIN,(JUST ONE 0.5MG) FOR SEVEN YEARS .MY DYSTONIA HAS AFFECTED MY ARMS AND LEGS FOR SHORT PERIODS OF TIME WHERE I CAN'T WALK OR RAISE MY ARMS. MY NEUROLOGIST HERE IN FLORIDA PUT ME ON A NEW
DRUG CALLED KEPPRA. SINCE NOVEMBER WHEN I WAS PUT ON THIS DRUG I HAVEN'T HAD ANY SPASMS WITH MY LIMBS. I AM THE AREA REP IN SOUTH EAST FLORIDA FOR 6 YEARS AND ONE OF MY MEMBERS ALSO IS NOW ON KEPPRA FOR DYSTONIA. IT IS OF NO BENEFIT FOR MY BLEPHAROSPASM AND BOTOX NO LONGER HELPS AS I NOW HAVE APPRAXIA. I HAVE GOOD DAYS AND BAD DAYS AS MOST OF US KNOW. I HAVE LEARNED TO ACCEPT WHAT I HAVE AS DR ANDERSON ASSURES ME I WILL DIE OF SOMETHING ELSE!! I TRIED A FRONTALIS SLING
LAST SUMMER AND I COULD NOT DEAL WITH THE PAIN FROM THE DRY EYES AS MY
EYES DID NOT CLOSE ENOUGH TO PROTECT MY CORNEA AND I NEEDED SO MUCH
HEAVY OINTMENT THAT I WAS UNABLE TO SEE AT ALL FOR 5 WEEKS UNTIL IT WAS REVERSED. 6 YRS AGO ANDERSON CLOSED MY UPPER TEAR DUCTS AND I DO
NOT USUALLY NEED TEAR DROPS ACCEPT WHEN I WAKE AND AT BEDTIME. YOUR
SYMPTOMS DO SOUND LIKE MEIGE FOR WHICH BOTOX WILL HELP BUT MAY MAKE IT
DIFFICULT TO SMILE. I HOPE I'VE GIVEN YOU SOME USEFUL INFORMATION.



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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Joann Humphrey
Posted by R Elias , Feb 27,2002,21:53 Top of Thread Archive
It's Lisa again! Thanks for all the replies to my post. I appreciate all the advice and encouragement you give Rolando and I. Rolando has an appointment to see and Oculoplastic surgeon here in Tucson and we will see what she has to say. Thanks again. God bless--Lisa & Rolando



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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by Ruth Kellogg , Mar 01,2002,17:47 Top of Thread Archive
Glad you are doing well following limited myectomy. I had a limited myectomy in May 2000, with great results. Forehead and brows remain tender for a long time, but I also had a frontalis sling done.
One hint for at night: try using a piece of Saran Wrap or Reynolds Plastic wrap over each eye at night, to avoid eyes getting irritated. I use it every single night, and don't use any ointment--just a drop of Celluvisc in each eye, and it works great!
Ruth in Massachusetts where it feels like winter again.



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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Ruth Kellogg
Posted by Alan Phair , Mar 02,2002,07:28 Top of Thread Archive
Ruth, I find the theory of using the Saran Wrap interesting. How do you keep it in place? Do you use it under a sleep mask or something? My fear would be that it would falloff and get into my mouth or nose. The way that my wife telss me I snore (I think she is making it up), I would probably get asphyxiated.

By the way, what part of Mass do you live. I am just over the border in Salem NH....Alan




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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Alan Phair
Posted by Kelly Saffell , Mar 02,2002,08:29 Top of Thread Archive
I know someone with beb/apraxia who uses the saran wrap every night as well. She has been doing it for years. She brought samples to my last support group meeting and handed them out to everyone. She cuts out the circles first and puts paper tape all the way around them and then puts them on at night. That way she holds in the moisture but she can still see if she gets out of bed. Works great for her. I don't have dry eyes so I don't need to use anything but drops when I first wake up.
Kelly in Dallas



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Re: Limited Myectomy update/Kelly

Re : Re: Limited Myectomy update --- Kelly Saffell
Posted by MaryNY , Mar 02,2002,15:42 Top of Thread Archive
How on earth do you cut circles out of Saran Wrap?? Mary



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Re: Limited Myectomy update

Re : Re: Limited Myectomy update --- Ruth Kellogg
Posted by Alan Phair , Mar 02,2002,14:44 Top of Thread Archive
Ruth, I was just wondering who your doctor is and did he do the Limited Myectomy. I use Doctor Borodic in Boston and had a limited myectomy done by him in 1997 and had Dr. Anderson do the more extensive onesin 2000 and 2001....Alan

I used to also go to Dr. Tom Hedges who is a noted Neuro Opthalmologist at Tufts New England Eye Center before he referred me to Dr. Borodic.




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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by Ruth Kellogg , Mar 01,2002,17:48 Top of Thread Archive
Glad you are doing well following limited myectomy. I had a limited myectomy in May 2000, with great results. Forehead and brows remain tender for a long time, but I also had a frontalis sling done.
One hint for at night: try using a piece of Saran Wrap or Reynolds Plastic wrap over each eye at night, to avoid eyes getting irritated. I use it every single night, and don't use any ointment--just a drop of Celluvisc in each eye, and it works great!
Ruth in Massachusetts where it feels like winter again.



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Re: Limited Myectomy update

Re : Limited Myectomy update --- Joann Humphrey
Posted by Tim Johnson-PA-USA , Mar 01,2002,21:10 Top of Thread Archive
Hi Joann, I'm so glad your surgery has been so successful for you, and hope all continues to go well. You deserve it! I was wondering about your "driving, reading and watching TV" now. Could you not do any of these things at all before the surgery? How much more can you drive now? Are things now like they were before you ever had BEB? Are there any limitations in your driving, reading and TV, or anything else that you do or would like to do and can't? I am really interested in the before and after details, because I'm trying to learn as much as I can about the pros and cons of surgery. Thanks for any answers you can give.

Tim in PA who went to both his Botox Dr and med Dr this week. Latest Botox not doing much for me yet after 25 days.




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Re: Limited Myectomy update/Tim

Re : Re: Limited Myectomy update --- Tim Johnson-PA-USA
Posted by Joann Humphrey , Mar 01,2002,22:55 Top of Thread Archive
Since Aug. 1 2000, I had done very little driving, staying within a mile of home since I had to hold my eyes open with a finger. Now I can keep them open. I'm doing blinking again, but not as badly as before. I'll get botox March 20 & hopefully that will help again. Previously my reading was limited to headlines & the most interesting articles. Then I'd still have to use my hands to hold the eyes open. The botox was working for me, but it seemed to be less & less helpful since last April. The July injections helped very little & that's when I pretty much quit driving. I debated having the surgery, even after I'd made the appt. with Dr. A. My GP felt I should have the surgery if I wanted to improve my life style so that convinced me to go ahead. I certainly don't regret it. It's just been 6 weeks since the surgery & they say to allow 3 to 6 months to know final results. My forehead is numb & eyelids itch a little. The opthalogist said I may be numb for a year but some of the nerves will repair themselves. And of course I have no wrinkles on the forehead, if anyone is interested in that. I did have the cosmetic surgery at the same time which Dr. A. recommended. Good luck with whatever decision you make.
Joann in Ark. where we may see a little snow tomorrow & it's to be quite cold.



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