Botox B-Myobloc


Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Jun 06,2001,11:12   Archive
Hi Y'll,

This is Joyce from NC who hasn't posted in a while because I have had a terrible time with my eyes.

Just to recap my situation: I am 64 now but started having problems approx 4-5 years ago. Took a while to find a doctor to put a name to this "eye problem". I saw one doctor for 2 years, the botox A injections did not work for me. I had a partial myectomy May '99 which lasted 6 weeks. Botox injections after that did not give me any relief except Jan. 2000 - 3 weeks. Because the Botox wasn't working for me except for that one time I told my doctor "no more Botox" so basically he said that he could do nothing else for me. Botox really made my eyes dry out and I had gritty, scratchy, wake up in the middle of the night pain and that was one of the deciding factors - besides the fact my eyes wouldn't stay open.

I go to another doctor - he tried the Botox again. I thought different doctor - different technique - maybe it will work with him. Same story - dry gritty eyes, severe pain in eyes and approx. 2 weeks later my eyes open for ONE day. I go back March 1 for a one month check up and he basically tells me that Botox won't help me and additional surgery would/could makle things worse. I had two options - wear the "eye crutches" or "tack" my eyes open. I don't claim to know everyithing about this disease but common sense told me that the way my eyes forcefully closed, the "eye crutches" would rub my eye lids raw within one hour and if he didn/t do additional surgery along with the "sling", my eyes would pull the "tack" loose probably with a week.

So I go to another doctor - this one has a very good reputation here in our state and he told me that my eyes were squeezing so forcefully that they could crack a walnut. That is one reason I have not posted or been able to read the BB lately because I have been virtually blind with the squeezing shut of my eyes. He said I definately needed surgery because I had too much muscle still left in my eyelids. He said normally more muscle was taken out in a partial myectomy and he questioned what was actually done when I had my surgery in '99.

BUT he wanted to try the new Botox B (Myobloc) on me to see if it would work for me. He said that the Myobloc had a drawback, it would hurt more than the Botox A. It would have a stinging, burning sensation. His method was to do small injections at more sites so I had 7 around each eye, 3 on the forehead and one each side of my nose for the Meige. 19 in all and ALL 19 HURT.

But God is good, I began to quote scripture - "I can do all things through Christ who strengthen me", I repeated it over and over and I guess I became so focused on saying the scripture that I didn't think about the pain.

He said it would take 4 -5 days maybe a week to see any results. So far I don't have the squeezing but my eyes still do not want to open good - I am sore around each eye and forehead and have had a headache since the injections. I also find that I am more light sensitive than before. I could not use my computer until today because looking at the screen made my eyes go wild. They shut down completely.

SO IF THERE IS ANYONE OUT THERE WHO HAS TRIED THE MYOBLOC, PLEASE E-MAIL ME AND LET ME KNOW HOW YOU ARE DOING. It is too soon to tell but I really hope this works for me. So far, no dry gritty, scratchy eyes, that's a plus for me.




Recommend Current pageAuthor Profile
Replies to this message


Re: Botox B-Myobloc

Re : Botox B-Myobloc --- joyce whitt/NC
Posted by Sally - in - Idaho , Jun 06,2001,20:43 Top of Thread Archive
Hi Joyce,

I know you have really been through a lot lately. I was hoping the Myobloc would be the answer, and perhaps it still will be. Wonder why doctors don't give some sort of light anesthetic before such painful injections.

Take care. Sounds encouraging that you don't have the grittiness this time. Keep us posted.

Sally in North Idaho




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Botox B-Myobloc

Re : Botox B-Myobloc --- joyce whitt/NC
Posted by Shelley Chambers , Jun 06,2001,20:45 Top of Thread Archive
Joyce: I have had Myobloc the last two times (Feb. and May). While the shots themselves hurt like HECK, I have never had any of the symptoms you mention. Once I got a small bruise, but no pain afterward or dry eyes. I see a movement disorder specialist, so maybe that helps.. I also have quite a few injections - 4 around each eye (ouch!) and 4 by each lip (OWEE - they are the worst!)
My biggest problem is DRY MOUTH! I have to carry around a bottle of water around the classroom with me. And I also bite my tongue, and the inside of my cheeks. It is quite painful at times. Any one have an good ideas for dry mouth? I take a B complex and Lysine and they seem to help. I also use Biotene toothpaste and mouth wash.
Shelley



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Dry Mouth

Re : Re: Botox B-Myobloc --- Shelley Chambers
Posted by Mindy , Jun 06,2001,21:00 Top of Thread Archive
Hi Shelley,
My dryness eased up when I was gradually able to
decrease the Parsitan. Other meds. in the past
also caused dry mouth.
I suck on Altoids alternating with sucking candy
and my bottle of water.
So glad to see you posting :-)
Mindy in NY



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Dry Mouth

Re : Re: Dry Mouth --- Mindy
Posted by Shelley Chambers , Jun 06,2001,21:36 Top of Thread Archive
Hi, Mindy! I will be able to post more soon because SCHOOL IS OUT AT 11:30 tomorrow! Yah! Of course, I'll be bored and dying to go back by July. And I get to go to the beach by myself for two whole days on Friday. I'm really excited about that. My eyes are good enough for a 2 1/2 drive to the beach! I'm going to that symposium on movement disorders. Wish me luck!
Shelley



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Dry Mouth

Re : Re: Dry Mouth --- Shelley Chambers
Posted by Mindy , Jun 06,2001,22:26 Top of Thread Archive
Hi Shelley,
I wish you the very best in all you do :-)
I wish you a wonderful summer vacation.
School will be back in session soon enough, until
then relax, de-stress, and take time to smell every
little flower along the way. Your eyes will thank you.
hugs,
Mindy



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Botox B-Myobloc

Re : Botox B-Myobloc --- joyce whitt/NC
Posted by Mindy , Jun 06,2001,20:51 Top of Thread Archive
Hi Joyce,
It was good to hear from you, but, sorry to hear
you are having such a hard time with your eyes.
I can't help you out with Myobloc info.
Just wanted to let you know I will be keeping you
in my thoughts and prayers.
I pray God's Peace upon you, and wisdom for your
doctors.
Mindy in NY



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile