Hey Shirley


Posted by Mindy , Mar 06,2001,15:32   Archive
Hey girl, good to see you back:-)
How did you botox go?
Hugs,
Mindy



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Re: I've got the Blahs

Re : Hey Shirley --- Mindy
Posted by Shirley-Arkansas-USA , Mar 06,2001,17:52 Top of Thread Archive
Hi Mindy. The botox went fine. The decision was made to go ahead with surgery for the apraxia problem. I'm in the process of trying to set things up with Dr. Anderson's office and checking on insurance, etc. Phone tag, mostly. Just seem to have a bad case of the blahs and haven't felt like posting. I feel pooped and depressed. Sorry about being bummed out. I do need an attitude adjustment. I've also been continuing to have a lot of trouble getting on and staying on the internet. I keep getting disconnected.
I was glad to hear that no one of our group was hurt in the earthguake and also sad to hear about the shootings in California.

Shirley in AR.




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Re: I've got the Blahs

Re : Re: I've got the Blahs --- Shirley-Arkansas-USA
Posted by Colleen (colleen,Colleen), Mar 06,2001,18:37 Top of Thread Archive
Hi Shirley
Glad you made it home ok
How is apraxia different from beb?
Hope you feel better soon
Kick thoes old blahs out.
Colleen



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Re:Apraxia

Re : Re: I've got the Blahs --- Colleen
Posted by Shirley-Arkansas-USA , Mar 06,2001,22:23 Top of Thread Archive
Hi Colleen, With BEB, you have the squeezing and the spasms and blinking. The botox that I get (100 units total) stops the real tight squeezing and spasms. My eyes still want to close. This is not a ptosis where they are just drooping or upper lids hanging at half mast due to botox involving the levator muscle which opens your eyes. My eyes simply want to remain closed and it is extremely difficult to get them to open. I raise my eyebrows and shake my head and make all kinds of facial contortions to get my eyes open. They will open briefly and then close. I found a combination of medicines that helps with this and gives me several hours a day per dose but one of the drugs is a stimulant and is raising my blood pressure and pulse rate and I cannot continue taking it long term. It is a very difficult thing to treat. I believe that the botox probably also weakens things and makes the condition worse. This has been a problem for me since the onset of my BEB and continues to be the most frustrating. I have had two neurologists who are movement disorder specialists tell me that surgery is the only other option to try.
There is an article on Apraxia in the BEBRF Main Pages at the top of this page if you want to read anything more about it.
I'm trying to get over my moodiness. I've just hit a slump.
Thanks for your concern.

Shirley in AR.




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Re: Re:Apraxia

Re : Re:Apraxia --- Shirley-Arkansas-USA
Posted by Carol Thoma , Mar 08,2001,10:43 Top of Thread Archive
Shirley,

I don't understand why you or your neurologist would consider surgery as the only other option besides botox. Setting aside the possibility of myobloc, which would probably cause the same sorts of problems as myobloc, why not at least try some medications? As I've said several times, I know that a lot of people are afraid of Artane but it works for me (and apparently for Jeff Lovell, bless him!). I take very small doses and can get through most days with no difficulty except for specific things--watching TV or movies, fluorescent lights in stores and malls, sometimes driving. Usually the BEB hits in late afternoon or evening, probably because my eyes are tired. Night driving is a scary experience and Artane isn't much help there because it increases the light sensitivity. But still, I don't have to go through the ordeal of the injections or the ptosis that follows. The Artane works for me; the botox doesn't. So back to my original question. Why not at least consider Artane or some other oral medication. Surely surgery is a desperate measure and not the ONLY other option!

Carol




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Carol Thoma
Posted by Shirley-Arkansas-USA , Mar 08,2001,20:53 Top of Thread Archive
Hi Carol, I certainly agree with you. I have tried Artane, Baclofen and the Scopolamine patch. I could not handle the short term memory loss with the Artane even at very low doses. I tried it for a couple of months and things were just getting worse and worse with my memory and it did nothing to help open my eyes. I saw no positive results with Baclofen, either. In fact, with it, my eyes were more inclined to close. The Scopolamine patch, I was able to leave on about 12 hours before I ripped it off. My chest was tightening up and I felt like I was going to jump out of my skin.
I presently take klonopin .5mg three times daily, Benadryl 50mg three times daily and Adderall-a stimulant drug, three times daily. It's certainly not that I haven't tried drugs, they just don't do a whole lot for Apraxia. Some drugs help with BEB but most do not help with Apraxia. The Benadryl helped for a while and then stopped working to keep my eyes open. The Adderall is what I credit with the ability to get my eyes to open at all or the combination of the three drugs. It is also causing my heart rate and blood pressure to be elevated, though, so, long term, I can't continue this.
I have definitely considered and tried various medications. Some help with the spasms but don't open my eyes. I agree that surgery is a desparate measure and one that I am not entering into lightly.
I cannot drive, nor read. I seldom can watch TV. My eyes are open sporadically in the morning until about an hour after I take the three different meds. Today, I've had a good day, but I took all the medications and my BP is up and my heart rate is over 100 just sitting here. I've been trying to cut back on them but was staying so depressed and my eyes were so bad that I was unable to do anything. So, I opted to take all the meds and have a good eye day. If you know of any medications specifically for apraxia, please let me know, because I and the three doctors that I have seen, don't know of any.
I might add that I have also tried accupuncture and have been seeing an upper cervical specific chiropractor for the past 6 months. The movement disorder specialist that I now see in St.Louis is into research for dystonias and teaching and is very current on things.
Apraxia is one of the more difficult if not the most difficult aspect of BEB to treat and not all people with BEB have this problem and Botox and medications work well for them. This has never been the case for me. Even when the botox has stopped the squeezing and spasms, I still have eyes that won't open.
Without the medication that is causing me additional health problems, my eyes would be closed 90-95% of the time. I'm not willing to give up my seeing life, yet, so have opted for surgery for hopefully some improvement.

Sorry, if I have been rather blunt. I think the people that know me and how I have quizzed others about surgery and making sure that is what they really want to do, know that I did a lot of thinking about this. Goodness, I'm the one that has been harrassing everybody else about surgery and what it does and doesn't do for at least the past year.

Shirley in AR.




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Shirley-Arkansas-USA
Posted by Carol Thoma , Mar 08,2001,22:04 Top of Thread Archive
Shirley,

Thanks for your explanation. It prompted me to do a search for "apraxia" in the BB archives. As I understand it, the distinction between blepharospasm and apraxia is that bleph. is the forcible involuntary closing of the eyelids and apraxia is the inability to get them open once they've closed. Is that right? If it is, then I also have both conditions, though my neurologist has never mentioned apraxia. I thought it was all part of the same basal ganglia neuron misfire. I do notice, though, that in the mornings there's more mere blinking while the closing, squeezing, can't-get-them-open thing happens more at night--driving home or walking the length of two buildings to get from the parking lot to my apartment. (I can't seem to convince the apartment managers that I really need a closer parking place and that I could conceivably fall down one of the little mini-flights of two or three stairs or that long sidewalk if my eyes decided to close at just the wrong moment.) Anyway, it seems that we have some of the same problems but yours seem worse than mine. I wish I could think of something more to help. (I enjoyed your refrigerator magnet story, if that's any consolation!)

Carol




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Carol Thoma
Posted by Shirley-Arkansas-USA , Mar 09,2001,01:47 Top of Thread Archive
Carol, If you can't get your eyelids open because of the squeezing late in the evenings, this is not apraxia. It is just your eyes squeezing closed due to the Blepharospasm. Apraxia generally occurs in the absence of squeezing. Go to the top of this bb page and click on BEBRF Main Page and find Apraxia listed there and read that information. It is rather difficult to explain. The botox does help me and gets rid of the real tight squeezing for about 6 to 8 weeks but it does nothing to help get my eyes open. This is also different from a ptosis (or droopy eyelid).
I'm glad that you enjoyed the refrigerator magnet story. My 17 year old thought it was pretty funny, too.

Shirley in AR who is still up from having her good eye day by taking all her medicine. I think that it was worth it. It got me out of the slumps, anyway.




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Shirley-Arkansas-USA
Posted by Joanne Matuzas , Mar 09,2001,10:37 Top of Thread Archive
Shirley, it's great to have you on the board!! Sorry about your slumps,
although you certainly have reason. Those of us who read the board know
your story re your apraxia and know that any decision you make, especially regarding surgery would be well analyzed and thought out.
So, glad to hear about the good eye day and please remember we are all
supporting you. With love, Joanne M. San Diego, CA



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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Joanne Matuzas
Posted by Shirley-Arkansas-USA , Mar 09,2001,14:10 Top of Thread Archive
Thanks Joanne, I've missed getting on the bb. (Even though I see that others can stir things up as well as I can).
Hugs,
Shirley



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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Shirley-Arkansas-USA
Posted by Carol Thoma , Mar 09,2001,11:35 Top of Thread Archive
Shirley,

Thanks for the reference. I had read the sections of the BEBRF relating specifically to blepharospasm but not the one for apraxia, which I had never heard of and therefore assumed would not be relevant. (I know. don't assume!) I found the following paragraph to be particularly helpful:

"Apraxia of lid opening is a condition in which patients who have otherwise normal eyelids have difficulty opening the eyelids. This is a problem in the circuitry for opening the eyelids, much like blepharospasm is a problem in the circuitry allowing squeezing of the eyelids. Pure apraxia of lid opening (which is not associated with blepharospasm) is very rare, but apraxia of lid opening is commonly associated with blepharospasm. The specific cause or control center for both of these diseases is poorly understood, but must be somehow intertwined. The blepharospasm patient with apraxia of lid opening will typically have spasms squeezing the eyelids shut, and then for seconds to minutes after the spasm stops, the patient is unable to open the eyelids. The eyelids may then come open almost normally for a time period and then, without warning, slowly droop shut again or be drawn shut by spasm. The apraxia of lid opening patient can be seen raising their brows and trying to open their eyelids as strongly as possible without elevation of the eyelids."

This sounds exactly like what happens to me. (I also use my fingers to open the lids when they won't open on their own.) Also on the rare occasions when I've tried the Botox, the ophthalmologist injected it into my forehead as well as my eyelids. But either way, I'm a "botox failure," which again seems to indicate apraxia.

By the way, "ophthalmologist" is an "opthal" (awful!) word to spell!

Carol




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Re: Botox failure

Re : Re: Re:Apraxia --- Carol Thoma
Posted by Shirley-Arkansas-USA , Mar 09,2001,14:24 Top of Thread Archive
Carol, how do you know that you are a botox failure? Did it not stop any of the spasms or squeezing? How much botox did you get? Sometimes, it takes several attempts before the right dosage or sites are found and sometimes it takes a different doctor. Even though, the botox doesn't help my eyes to open, I never considered myself a botox failure. It does eliminate the painfully tight squeezing. THe first doctor that injected me told me that it didn't seem to be working but at one point, he injected on either side of my nose to help with my nose scrunching and upper lip pulling up. My upper lip was "dead" for over 3 months. I had difficulty eating and drinking. I couldn't smile. I kept hitting my upper lip with my food as my mouth wouldn't open properly. Also, after this same doctor injected me, my upper lids would be so weak and floppy that when I showered, water would get up under my lids when I turned my head upside down to rinse my hair. So, I knew that the botox would work on me if injected in the right places. I switched doctors and believe me different doctors have different techniques.

That eye doctor word is a killer. I have to stop and think every time I use it and then have to double check and then wonder if I'm actually right or not.

Shirley in AR.




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Re: Botox failure

Re : Re: Botox failure --- Shirley-Arkansas-USA
Posted by Colleen (colleen,Colleen), Mar 09,2001,20:58 Top of Thread Archive
Hi Shirley Did you talk to Doc. Perlmutter about Myobloc? It has been 4 weeks today i got myobloc.My eyes feel real good better than with botox a Eyes is staying open,but the mouth is still shutting.My husband gets a break from my talking all the time.
Hope you get to feeling better.

Colleen



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Re: Botox failure

Re : Re: Botox failure --- Colleen
Posted by Shirley-Arkansas-USA , Mar 10,2001,21:11 Top of Thread Archive
Hi Colleen, I briefly talked to him about it but not about me getting it. Botox does work on me, it just can't help the apraxia. Myobloc probably wouldn't help it either. I'm sure that my insurance wouldn't pay on it, either, since it's not approved for BEB.
I am feeling better. Thanks for your concern. I'm glad that the Myobloc worked well for you. Did you get injections in other areas besides your eyes?

Shirley in AR.




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Re: Botox failure

Re : Re: Botox failure --- Shirley-Arkansas-USA
Posted by Carol Thoma , Mar 10,2001,12:51 Top of Thread Archive
Shirley,

You asked how I know that I'm a Botox failure. Maybe I'm jumping to conclusions, but the only results I've noticed from the Botox are a worsening of the symptoms (not just ptosis but squeezing and what I'm now sure is apraxia) from about the third to the sixth day after the shots and then a return to "normal"--that is, to BEB helped but not fully controlled by the Artane (which I can't go off if I wanted to because it controls my torticollis). I confess that I haven't been very scientific about this--haven't seen my neurologist often enough, in part because of insurance problems--and the neurologist isn't the one who administers the Botox. What I need and probably will never find is an interested and informed observer who can monitor me and note the effects of the Botox injections systematically. Here's Carol without medication. Here's Carol on Artane. Here's Carol on Botox (and Artane). It quite literally never occurred to me to ask about the dosage. When the opthalomologist asked me whether I wanted shots in the eyelids or just in the forehead I said that since it's the eyelids that are affected, I guess I want both. (How many shots? How would I know?) They didn't work before, but I'm trying again. . . . )

What I'm trying to say, and not doing a very good job, is that my Botox injections have been very unsystematic and several years apart. When I request them, feeling that maybe the Artane isn't doing its job, my neurologist always okays them, but I have to arrange to get them from someone else because he doesn't administer them himself. The first time I went to Barrows in Phoenix (or is it Scottsdale? I can't remember). That was eight or nine years ago and all I remember is that the neurologist was a first-class jerk. He left me half-dressed (I was getting shots in the neck as well as the eyes) to answer the phone. I'm sitting there in my bra and he leaves the door open and I have to shut it myself! His wall was decorated with photos of himself attending prestigious conferences and a cartoon of a curvaceous girl labeled "Little Annie Fanny." So I don't remember much about the shots themselves or their effects. They didn't hurt as much as I expected but they didn't have any dramatic results that I remember. Just ptosis for a few days and then no noticeable difference from Artane alone.

The last time I had injections was December 1998, two weeks after my daughter was killed in a car accident. (I suppose I should have cancelled the appointment but I felt that she wanted me to have it.) Needless to say, the last thing on my mind was the number of injections or the amount of Botox. The reaction to those shots was very bad. (See the first paragraph.) Possibly the effect was exaggerated by my emotional state. I don't know. Anyway, this is probably more than you wanted to hear, and now my mind is on my daughter instead of BEB so I'll stop writing now. Feeling sad, lonely, and confused.

Carol




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Re: Botox failure

Re : Re: Botox failure --- Carol Thoma
Posted by Mindy , Mar 10,2001,20:44 Top of Thread Archive
Carol,
I'm so sorry to read the problems you've been having with your botox.
I wish to express my sincere condolences for the loss of your daughter. My heartfelt prayers are with you.

I keep a record on my computer of my symptoms, eyes/jaws/moods, and rated them on a scale from 1-10.
I also mark on there which meds. I'm taking and events of the day.
When I would go to the doctor I would print out my chart.
It was the only way I could keep an accurate day to day account.
The most interested and informed observer doesn't always know how
and what you are really feeling on the inside. What you feel on the inside plays a very big part as to how your symptoms react.
They can't always see teeth clenching, jaw pain, neck pulling, eyes
hurting, and what it feels like on the inside when you are trying to open your eyes and can't.
You can't really rely on anyone's memory, even your own especially
on Artane.

Hugs of support,
Mindy




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Re: Botox failure

Re : Re: Botox failure --- Carol Thoma
Posted by Shirley-Arkansas-USA , Mar 10,2001,21:32 Top of Thread Archive
Carol, Let me also express my sincere sympathy in the loss of your daughter. I can only imagine what you went through.

If you can find a good movement disorder specialist that gives botox, it might be worth another try. I don't believe that the botox itself would have made the squeezing worse. I think that other factors were entering into it and the stress made your spasms worse before your botox even had a chance to start working very well. Sometimes, it takes a while to get the right dosage and sites and the doctors technique is important to keep you from getting a ptosis. The doctors have never asked me where I want the shots. They look at what my eyes are doing and determine where the injections need to be placed to get the best results. I think that you ought to give it another try unless you are content with the degree of improvement that the Artane gives you. If you are, then just stick with what you are doing now.

Shirley in AR.




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Re: Botox failure

Re : Re: Botox failure --- Carol Thoma
Posted by Sally - in - Idaho , Mar 10,2001,23:44 Top of Thread Archive
Hi Carol,

I'm so sorry for your sadness. Believe me ... I understand it, every ache it brings, as I also lost a son in a car accident. Not a day goes by that I don't think of him several times and wonder how life would be different had he lived.

Don't feel you are alone. I am filling in my e-mail address and am a good listener if you would like to write to me. May the angels bring you comfort.

Sally in North Idaho idaholt@nidlink.com




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Re: Sally

Re : Re: Botox failure --- Sally - in - Idaho
Posted by Mindy , Mar 11,2001,15:07 Top of Thread Archive
Dear Sally,
I'm so sorry to hear of the loss of your son.
My heart goes out to you with love and sympathy,
Mindy



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Re: Botox failure

Re : Re: Botox failure --- Carol Thoma
Posted by Delaine Inman , Mar 11,2001,18:03 Top of Thread Archive
We all experience loss and sadness, but I just can not imagine the loss and sadness of losing a child to cancer, auto accident or any other reason. A big group hug to all of you who have suffered that kind of pain in your lives. My daughter lost a baby that was born prematurely, that is the closest I have come to witnessing such agony and being totally powerless to do anything except love her in that moment. I hope you all can feel that love surrounding you now as you have shared your very intimate and sacred stories with us.



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Re: Botox failure

Re : Re: Botox failure --- Delaine Inman
Posted by Evelyn , Mar 11,2001,21:48 Top of Thread Archive
Carole and Sally,
My heart goes out to both of you over the loss of your children. I can't imagine anything worse.
Evelyn



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Re: Botox failure

Re : Re: Botox failure --- Carol Thoma
Posted by Linda Ostheimer , Mar 13,2001,10:38 Top of Thread Archive
Carol,
My heart goes out to you and your problems. I can not imagine anything more devestating then what goes on with our children. I do not mean to minimize your loss in any way but sometimes there is a little comfort in death knowing that they are finally at rest. I watch my daughter suffer with MS and it breaks my heart. I always wish it was me but you know God has his plans and we are not to question that but pray that all that happens can bring glory to him. Again my heart goes out to you and I do pray that you can find peace in the near future. Linda in Indiana



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Re: Botox failure

Re : Re: Botox failure --- Linda Ostheimer
Posted by Carol Thoma , Mar 13,2001,21:54 Top of Thread Archive
Linda,

Thank you for your kind words. I don't know what you'll think of this, but I lost my father last September and I felt, near the end, as if Mel (my daughter) was reaching out to welcome and comfort him. He closed his eyes and reached upward toward someone no one else could see. I believe in my heart that it was Mel he saw and that moment gave her death a new meaning. Made it more bearable for me. Does that make any sense?

At least in his case I had a few weeks to prepare for my loss and help my mother prepare for hers. But Mel was only 24 and vibrantly alive and her death was wholly unexpected, a cruel blow out of nowhere. My only consolation is that she and the grandpa she loved are together.

Carol




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Re: Death & beyond

Re : Re: Botox failure --- Carol Thoma
Posted by Shanasy in IL , Mar 14,2001,11:06 Top of Thread Archive
Carol and Linda,

I JUST finished reading one of the BEST books I have ever read and your experiences compelled me to share it with you. It is called "The Eternal Journey" by Craig Lundahl (cc 1997). It is a a non-fiction book telling true near-death experiences and what we on earth can learn from them. I couldn't put the book down! It has quite a few references to what Linda saw her father do as he passed away (reaching his arms up). Apparently that is not that uncommon. To read this book (and if you believe it) I think would be tremendously therapeutic for anyone suffering from grief from a loved one. If you do read it, email me and let me know what you thought of it or if you feel it helped you at all. I would be curious. I truly hope you will as it can give you insight into a bit of "the other side" - if you believe in the "near-death experiences". I can't think of anything more comforting!

Shanasy




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Re: Carol/Sally - Your Sadness

Re : Re: Botox failure --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Mar 11,2001,10:25 Top of Thread Archive
Dear Carol and Sally, We can't imagine how you dealt with such sadness in losing your children. We can only pray that you continue to be strong and go on with life.

My prayers and with you

June inToronto




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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- June in Toronto
Posted by Carol Thoma , Mar 11,2001,14:21 Top of Thread Archive
Dear Sally and June,

Thank you both for the kind words. Sally, I'll write to you. I think it will do us both good to talk and also we seem to have a lot in common. Too choked up to do it now.

Carol




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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- Carol Thoma
Posted by pam Brockwell , Mar 11,2001,17:01 Top of Thread Archive

Dear Carol
I am fairly new to this BB but did pick up you message and I gather that you have recently lost your son. My heart goes out to you as I lost my son at 21 to cancer almost three years ago. At this time the pain you are feeling will totally consume you, go with the flow, allow yourself the time you need to grieve. On any one day at any particular time, nobody will ever know exactly how you you feel. However I do understand the range of emotions you will feel over the next few weeks and beyond. I gathered strength from my family and friends and I hope that you can do the same. Like me, I am sure you will have enormous chest of wonderful memmories of times spent together. Take good care of yourself Carol.
Sincerely and with my love
Pam




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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- pam Brockwell
Posted by Colleen (colleen,Colleen), Mar 11,2001,18:40 Top of Thread Archive
My love & prays goes out to all of you that have lost children Being a mother i know that must be the worst thing that could happen to you.

God Bless all of you

Colleen




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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- Colleen
Posted by Evelyn , Mar 11,2001,21:56 Top of Thread Archive
Pam, My sympathies extend to you also. Evelyn



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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- Carol Thoma
Posted by Sally - in - Idaho , Mar 11,2001,20:21 Top of Thread Archive
Whenever you need me, Carol, I'll be here. I've had many more years to deal with (not to accept or forget) the pain than you have. Our son would have been 45 tomorrow and he was killed at age 22. Still seems like yesterday and I won't try to tell you that the hurt ever goes away, but the excruciating pain of the first couple of years does let up. We just go on and try to live a life that would make our children proud. There will always be days when the memory hits you afresh and you cry. But crying does help.

Hugs,
Sally




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Re: Carol/Sally - Your Sadness

Re : Re: Carol/Sally - Your Sadness --- Sally - in - Idaho
Posted by Carol Thoma , Mar 12,2001,11:02 Top of Thread Archive
Sally,

My thoughts and prayers are with you today on your son's birthday. Mel (Melanie) was 24 when she was killed. She would have turned 27 a month from today (April 12). I have to go to work now but will try to write tonight.

Love,
Carol




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Pam's mistake

Re : Re: Carol/Sally - Your Sadness --- Carol Thoma
Posted by Pam Brockwell , Mar 11,2001,20:25 Top of Thread Archive
Hello Carol
It seems that I have made a mistake, my apologies. It was an assumption on my part, after reading Sally's email that you had lost a son. I am sorry.

Pam from New Zealand




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Re: Pam's mistake

Re : Pam's mistake --- Pam Brockwell
Posted by Sally - in - Idaho , Mar 12,2001,01:54 Top of Thread Archive
Pam ... This link all began when Carol mentioned that she had lost a daughter in a car accident a couple of years ago. Things got rather confused.

Sally in North Idaho




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Re: Pam's mistake

Re : Re: Pam's mistake --- Sally - in - Idaho
Posted by Pam brockwell (Pam Brockwell,Pam brockwell), Mar 12,2001,21:54 Top of Thread Archive
Thank you for sorting the confusion out for me Sally. Maybe I will not post anymore messages.

cheers from New Zealand

Pam




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Re: Pam's mistake/DON'T stop posting

Re : Re: Pam's mistake --- Pam brockwell
Posted by Dee in OR (Dee L.,Dee in OR), Mar 13,2001,12:02 Top of Thread Archive
Pam,

Please don't stop posting. we all make mistakes and assumptions now and then. And sometimes a posted message may not be too clearly written. We need you here and you need us, so please don't stop posting.

By the way, I have friends in Christchurch - what part of NZ are you from?

Dee in OR who always puts her foot in her mouth!!




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Re: DON'T STOP POSTING from Dee

Re : Re: Pam's mistake/DON'T stop posting --- Dee in OR
Posted by pam Brockwell , Mar 13,2001,15:48 Top of Thread Archive
Thank you for message Dee. I live in Aucklnad which is in the North Island. Christchurch is a beautiful city in the South Island. I do not think I have Bleph. communicting with Gail from Tasmania. I am waiting to see a Neurologist as my symptoms point more towards Hemifacial Spasm. I communicate by email with Gail from Tasmania and she has been so helpful. I am enjoying the contact with her. Even going privately I must wait until May 1st for an appointment. I have seen three eye specialists and do not feel confident with any of them. I have this problem for around 10 months now, it is a real nuisance.
I hope this finds you well.

cheers Pam




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Re: DON'T STOP POSTING from Dee

Re : Re: DON'T STOP POSTING from Dee --- pam Brockwell
Posted by Dee in OR (Dee L.,Dee in OR), Mar 13,2001,19:16 Top of Thread Archive
Pam,

I'm so glad you decided to post again. I knew if I asked you a question, like where in NZ do you live, you would have to post again!! As far as not being sure if you have blpephs, we don't care. You could have fleas for all we care, we just like having you here as part of our gang and when you find out for sure exactly what your diagnosis is, then please be sure and let us know. I'm sure someone will have something to say about it!! I'm glad you are in touch with Gail. She is great, isn't she? We talk often via PalTalk. I love her accent. And she is very knowledgeable. She loves to research everything, and usually does a god job of it too. I hope my hubby & I can get to NZ & Tasmania some day.
I wish you well in your search for a diagnosis and a good physician.

What do you do in NZ? Hope to hear from you again.

Cheers,

Dee in Oregon




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Re: Please, DON'T leave us!

Re : Re: Pam's mistake --- Pam brockwell
Posted by Sally - in - Idaho , Mar 13,2001,19:03 Top of Thread Archive
Hi Pam,

Please don't leave us over a little mix-up. It's difficult to keep everything and everyone sorted out here, but no one cares if we mix people up. Every now and then someone calls me Shirley and I think, oh my gosh ... they'll expect me to stir something up a la Shirley! Then someone comes along and puts us in our proper order again! We're all in this together and need one another. Everyone has some unique quality to offer and that's what keeps things going. Tell us more about yourself and New Zealand.

I hope to see you here regularly.

Sally in North Idaho where we just had a dust storm and it got so dark outside that I was afraid Mount St. Helens had blown her stack again!




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Re: Pam's mistake

Re : Re: Pam's mistake --- Pam brockwell
Posted by Carol Thoma , Mar 13,2001,21:37 Top of Thread Archive
Pam,

Your sweet words of condolence were just as appropriate regarding my daughter as they would have been if she were a son. Your "mistake" didn't bother me at all. I'm sorry that you have also lost a child. Son or daughter, it doesn't make any difference in the way we feel. Please don't be so hard on yourself.

Your friend,
Carol




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Re: Pam's mistake

Re : Pam's mistake --- Pam Brockwell
Posted by Carol Thoma , Mar 12,2001,10:52 Top of Thread Archive
Pam,

There's no need to apologize. Your words were kindly meant and I appreciate them.

Carol




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Re: Re:Apraxia

Re : Re:Apraxia --- Shirley-Arkansas-USA
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Mar 09,2001,11:34 Top of Thread Archive
Hi Shirley,

What kind of surgery will you have for the apraxia? Will they tack the eyelips open or what?

I have the same problem that you do. I posted back in January that my doctor said that because I didn't want to do the Botox any longer there was nothing else he could do for me. I was disappointed, I thought he would at least consider additional surgery and even "tack" my eyelids open. He had discussed this back in May '99 when he did a limited myectomy on my eyes. The reason I didn't want to do the Botox was becauses in the two years that I had tried it, I had more complications than good results. My eyes might stay open a day or half day and one time 3 whole weeks. But that was the only time the Botox worked.

I allowed myself to be depressed about one day and then I got mad and decided to see one more doctor before my Cobra insurance ran out. I had already seen a doctor at Duke Eye Center so I made an appointment and one Feb 1, I saw him and tried the Botox again. I was so hoping that it would work again. He only gave 8 injects in all, 4 on each side of the face, 2 on forehead, two on each side of the eyes and two on the cheeks (one on each side. I felt the squeezing muscles release almost immediately but my eyes still did not want to open. I knew it might take a few more days so I patiently wait. I had the same problems with "dry" eyes that I had had before. For 3 days my eyes were gritty, scratchy, felt like briars in them, and I kept putting the ointment in them. I could stand no sunlight and I could not go outside. I still had the fight/battle/struggle just to open my eyes. My eyes were pulling down and my forehead was trying it's best to open my eyes but it was doing a poor job. By mid morning I had bad headaches. On Feb 10, my eyes open and remain open all day and then in the following days it was back to the fight/battle/struggle just to open my eyes.

When I returned on March 1 for a check up with the doctor at Duke he told me that he also agreeded that Botox was not the answer for my eyes. He said additional surgery could cause more complications. (myectomy) I have BEB, Meige and Apraxia and the Apraxia is the culprit. He said that I could wear the "crutches" on my glasses or I could have my eyes tacked open. He did not said that he would or would not do it but at any rate I have to wait 4 months or longer to get the Botox out and then come back for evaluation.

I can't drive, I walk around my house with my eyes closed, when I go out someone has to lead me around. It seems that my eyes want to close whenever I am moving about. Even riding in the car make my eyes close.

But God is good, I can look down, well some on the time anyway,. At least right now I can look down at the keyboard and type. Who knows afterwhile they will shut down again. I try to take it one day at a time and just do the best I can.

I understand how you feel Shirley and I pray that your surgery will work for you.




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- joyce whitt/NC
Posted by Shirley-Arkansas-USA , Mar 09,2001,14:06 Top of Thread Archive
Hi Joyce,
Mind you, I haven't talked to Dr.Anderson about what he plans to do with the exception of at the conference last August. I assume that I will have an upper myectomy, ptosis repair(where any excess baggy skin is removed from the upper lids that might be causing the lids to be difficult to open) and levator abduction (or shortening-tightening) to help the eyes to open easier. I'll still have to have botox but shouldn't need as much in the upper lid area which may be contributing to the apraxia by just overall weakening of things. This is just my assumption as I haven't been to see him to know exactly what he plans to do. I'm just going by what he told me when he looked at me at the conference and by what I think needs to be done. If that doesn't improve things, there is always the frontalis sling. That would be an option at some point if the apraxia doesn't improve. I won't do that first. Some people have had good results with that procedure for apraxia.
Joyce, if I look down to read or lie down and try to watch TV, that is a sure way to get my eyes to close. For some reason, if I concentrate on looking up high without moving my head, my eyes will open easier but tire very easily this way. Must be using different muscles. Who knows?
I feel for you, Joyce and can certainly relate to what you are talking about. Dr. Anderson has a real loose description of apraxia of lid opening and feels that most of the time, an upper myectomy, ptosis repair and levator abduction helps or improves these patients symptoms. I'm going to give it a try, anyway.
Allan had his lower myectomy yesterday. I hope that he did well and is being nice to his wife. I'm sure that he is.
I'll keep everybody posted on things. Right now, I am waiting on my insurance to give the go ahead to Dr. Anderson's office and then will schedule the surgery.

Shirley in AR.




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Shirley-Arkansas-USA
Posted by catherine pender (Catherine Pender,catherine pender), Mar 09,2001,21:59 Top of Thread Archive
Shirey

Glad to hear that you are going to try the surgery with Dr Anderson
I feel like I have a new life now that my eyes are open. As you know I went to Dr Anderson last Easter and feel that it was a success. No one even notices unless I point it out. I just celebrated my 50th a few weeks ago and I believe I am in my best half now. I could not have said that this time last year. Hope all goes well for you. You will be a great Poster women!
Catherine in Calgary who does not post often checks up on all you guys!




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- catherine pender
Posted by June in Toronto (June Floyd,June in Toronto), Mar 10,2001,06:00 Top of Thread Archive
Catherine, it was nice to read your post and I'm so pleased to hear that things are going so well for you, and that you consider your surgery a success. Its great to hear good news like this! Congratulations on turning 50 - I'm sure you have lots of good times ahead of you. Keep checking up on us - we need it! Best wishes

June in Toronto - who managed to sleep in until 5am this morning --things are getting better!




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- catherine pender
Posted by Shirley-Arkansas-USA , Mar 10,2001,21:16 Top of Thread Archive
Thanks Catherine, Go back and look on the bb on your birthdate. I think that you missed a few postings. You maybe didn't know it but we were all wishing you a happy birthday. So, go back and look. You're supposed to check in a little more often than this. Consider yourself reprimanded and talk to us more often.
Take care,

Shirley in AR.




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- Shirley-Arkansas-USA
Posted by catherine pender (Catherine Pender,catherine pender), Mar 11,2001,11:09 Top of Thread Archive
I needed that Shirley!
I have tried to get into the archives but can't seem to find it. Thank you all for my birthday wishes.
On the 9th (Friday nightmy wonderful husband had a party with sixty people hired a band and caterer. Everyone danced and had a great time. Around midnight my husband Patrick went to the mike and sang Moonriver (with the help of the band as he can't sing and doesn't know the words lol). I danced with both my boys and it was perfect. We got to bed about 3:00 left the mess as the caterers were coming back the next day to clean up, then got up at 6:00 to catch a 8:30flight to MEXICO where we did nothing but sit and relax. My eyes we the best they have been since the start of beb. The humidity helped so much. That was probably the best part of the vacation, not even thinking about my eyes all day.
I do believe that this is the start of better things to come. My attitude is certainly better and so are my eyes.
Life if good, Thanks all for thinking of me and good luck to all those out there who are serching for better things.
Catherine

Catherine




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Re: Birthday Bash and Vacation

Re : Re: Re:Apraxia --- catherine pender
Posted by June in Toronto (June Floyd,June in Toronto), Mar 11,2001,13:27 Top of Thread Archive
That's so nice to hear about your birthday party, Catherine, and the vacation in Mexico. Wow, your family did good by you!
So pleased to hear that your beb is better and life in general. Continue to enjoy and be positive.

June in Toronto




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Re: Re:Apraxia

Re : Re: Re:Apraxia --- joyce whitt/NC
Posted by Ann Doyle , Mar 13,2001,18:55 Top of Thread Archive
Joyce, You described my symptoms and how I handle it ( I don't).
I had hemifacial spasm and MVD surgery in Pittsburg by Dr. Jannetta ( the best) The "spasms" kept getting worse. They weren't spasms. My eyes stayed shut but sometimes I could look down. After 4 Months, Dr. J
saw me again and said I changed and needed a movement disorder clinic.
He also had an emg done and said it had changed. He believed I had beb/
I believe a also have apraxia.. I have an appointment with a movement
disorder specialist March 20th. My life has really changed. I hope botox works. or that something does. Ann Doyle mahli@mindspring.com.
I am new to this site. I had been studying HFS on Circle of friends. I'm just learning how to use the bulletin board.



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Re: I've got the Blahs

Re : Re: I've got the Blahs --- Shirley-Arkansas-USA
Posted by Mindy , Mar 06,2001,20:24 Top of Thread Archive
Aw sweet Shirley, makes me sad to hear you're feeling blah.
No doubt you are tired.
You've been carrying this on your shoulders for quite some time now.
Mental stress is exhausting.
And then the tension of having to travel so far for your botox and all
the other family details that come into play when you need your injections.
I'd be willing to bet you if it were your kids or husband that needed
to do this you wouldn't give it one second thought.
We always seem to put ourselves on the bottom of the list.
All the above would poop you out and that does bring on the feeling
of being depressed.
You need some Big Big Huggs and some well deserved relaxing time for
yourself.
And I give you permission to yell at me if I'm wrong
If you do, please be kind and do it in a nice way :-)
Love ya, kiddo,
Mindy
Related link: We all need hugs



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Re: I've got the Blahs

Re : Re: I've got the Blahs --- Mindy
Posted by Shirley-Arkansas-USA , Mar 06,2001,22:28 Top of Thread Archive
Thanks Mindy, I can't say that I've been too sweet lately, though. I won't yell at you because, I'm sure that you are right. There are just a lot of details to be worked out.
Thanks for the hugs.

Shirley




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Re: I've got the Blahs

Re : Re: I've got the Blahs --- Mindy
Posted by Sally - in - Idaho , Mar 07,2001,12:20 Top of Thread Archive
Charming, Mindy. You lead us to the nicest places.

Sally




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Re: I've got the Blahs -Sally

Re : Re: I've got the Blahs --- Sally - in - Idaho
Posted by Mindy , Mar 07,2001,13:02 Top of Thread Archive
Thanks Sally, and you say the nicest things:-)
Mindy



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