has anyone actually moved because of their BEB?


Posted by kathy , Sep 01,2001,07:37   Archive
i'm wondering if anyone has ever moved to improve their BEB to a different climate? or even just visited somewhere and their symptoms appeared much lessened. please reply.



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Kelly Saffell , Sep 01,2001,09:20 Top of Thread Archive
I've noticed that my symptoms are better the few times I have been to Florida but I assumed it was because I was on vacation and had no stress, no reading/homework with my daughter, no driving, etc. I've never thought about the effect climate could have.

Kelly in Dallas




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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Kelly Saffell
Posted by Delaine Inman , Sep 01,2001,13:57 Top of Thread Archive
I know there are people with BEB who live in Florida, I talked to some before I went there for surgery. They all got better results than I did from their surgery and while I was in Florida before and after the surgery, I did do better than usual. I did well at St. George Island after I was first diagnosed. It could be the de'stressing and the beautiful ocean that sooths my soul. Hummmmmmmmm? Did anyone visit Sedona while you were in AZ. I've only been once but I wanted to stay I felt so good and it was so amazingly breathtaking. That was before BEB, but I had FMS. I know Laverne Pope and her hubby went to conference and then to Sedona. I'll email her and see what she says.



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Delaine Inman
Posted by Virginia , Sep 01,2001,14:46 Top of Thread Archive
Delaine,
We went to Sedona the day before the conference. I had a good day, but then I had several in Arizona. Not enough, though to believe that it would really make a difference. Drs. Stacy and and Adler seemed to have enough experience in treating BEB patients that I wouldn't think the Phoenix area would be a big advantage. (Except for having good doctors.)

I also had good days earlier this year in Florida, but again, I don't think it would make a permanent difference. I have good days at home, too.

Virginia, not moving from AL for now




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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Delaine Inman
Posted by kathy , Sep 03,2001,05:38 Top of Thread Archive
my symptoms dramatically improved in fla. while staying next to the ocean. my doctor said the ocean breezes did indeed do wonders. there was even a huge rain cloud at one point, that normally would have squeezed my eyes shut at home, but did nothing there.



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Lynn Yarbrough , Sep 01,2001,15:56 Top of Thread Archive
My family moved from La Habra, CA to the Boston area in 1965. The reason was job opportunity, but the BEB was a major factor in the decision, Where to live? I needed to be near public transportation because the BEB inhibited my driving.

--- Lynn




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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Lynn Yarbrough
Posted by Delaine Inman , Sep 02,2001,23:48 Top of Thread Archive
Boston truly does have excellent public transportation. Even a redneck like me found my way around on 2 different visits there. I have good days in TN and I know BEB is in every state so moving for transportation would probably be one of the few reasons to move anywhere.



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Alan Phair , Sep 01,2001,17:51 Top of Thread Archive
Kathy, you pose an interesting question. Last week, we had a horrible period of high humidity along with rain. My eyes were so bad that I said to my wife that if it were like this all the time, I would move somewhere where the humidity is low. I probably wouldn't move but the thought was there...Alan



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Alan Phair
Posted by June in Toronto (June Floyd,June in Toronto), Sep 02,2001,09:15 Top of Thread Archive
Alan, whilst walking the other evening with my hubby, when it was dull and overcast, I said how wonderful it was not to have to wear a sunhat and dark glasses. I jokingly said that perhaps we should move back to the U.K. (I left there in 1960 and one reason was because of the damp weather) - now that climate looks so.....good to me! Like you, I doubt that we will move, but it was definitely a thought.

June in Toronto where the sun continues to shine brightly during this long summer although the temperature has dropped a bit.




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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Alan Phair
Posted by kathy , Sep 03,2001,05:42 Top of Thread Archive
alan , the high humidity along with the high heat is exactly what i have been dealing with all summer. so altho you normally don't get this where you live, it did make your eyes worse?



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- kathy
Posted by Ann Doyle , Sep 03,2001,05:50 Top of Thread Archive
I've noticed that if there is a lot of moisture in the air--not rain, my eyes are worse . Have you have ever noticed how a drop of water on a piece of material magnifies? I think the water vapor or small droplets act as a magnifier and intensifies the rays power to irritate. Just a guess. Ann Doyle



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Ann Doyle
Posted by kathy , Sep 03,2001,06:19 Top of Thread Archive
oh yes, the humidity in the air is like another thick barrier your eyes have to overcome. are you talking about the sun shining on everything just after it rains? it is intensely brilliant then.



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Sep 01,2001,20:16 Top of Thread Archive
I have had hemi facial spasms for 7 years, live in N.E. Ohio in the summer for 6 months were the humidity is not high. We spend the winter near Naples Fl. S.W. near the Gulf, hi humidity.I do not notice any difference in my condition, as we move back and forth. I receive Botox in both states, with pretty good results.The last injection were 19 of them from my forehead to my neck, yes they hurt.The last results were the best, even thought I thought this new Doctor could have had a better chair side manner, I reclined slightly. Would I go back to him? Yes, the next nearest Dr. is over 100 miles away, and this one was only 30. Edith still in Ohio for 6 more weeks.



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by Delaine Inman , Sep 02,2001,23:51 Top of Thread Archive
So in which state do you do better? Florida or Ohio?



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Delaine Inman
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Sep 03,2001,02:51 Top of Thread Archive
Dear friends, My spasms seem to be about the same in either state.Have found goods Opths.in both states to give me my injections.More sun in Fl. so need the sunglasses all the time, but the light and sun do not seem to bother me as much it does most of you. I will soon send a pair of my old glasses to get the F 41 pink tint, will let you all know how much they help me.Edith still in Ohio.



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by kathy , Sep 03,2001,05:47 Top of Thread Archive
i think you'll find that they help alot!



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by Ann Doyle , Sep 03,2001,05:35 Top of Thread Archive
When you go from one doctor to a new doctor do you take a record from the old doctor with you showing where the injections are made and how much Botox is given and the size of the needle or any information? Ann Doyle



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Ann Doyle
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Sep 03,2001,14:55 Top of Thread Archive
When this started for me it was just my left eye, so I called it BEB, over 7 years it has become hemifacial, so I cannot call it BEB anymore I am told.So I now just call it hemi facial spasms, I am learning with the help of all of you. Yes I get copies of all my medical records and make an extra copy for my self and give the new Doctors a copy. How ever the last new Dr. here was not interested where the last injections were, he seen me in full facial spasms, and informed me he had his own way of injecting. It hurt but it sure has been a good job of slowing the spasms.So some things are a trade off.Edith



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by Ann Doyle , Sep 04,2001,08:13 Top of Thread Archive
Edith, If you really do have hemifacial Spasm, there is a cure for it--MVD Microvascular Decompression surgery 95% of the time. There are 2 good sites. One is Circle of Friends (cofhfs) Ann Doyle


>groups.yahoo.com/cofhfs/message
is there bulletin board. Another is Hemifacial Spasm Association (HFSA)
http://groups.yahoo.com/group/hfs-assn/messages is there bulletin board. Ann Doyle

--modified by Ann Doyle at Tue, Sep 04, 2001, 11:35:51

--modified by Ann Doyle at Tue, Sep 04, 2001, 11:37:11




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Hemifacial spasm

Re : Re: has anyone actually moved because of their BEB? --- Ann Doyle
Posted by Virginia , Sep 04,2001,08:43 Top of Thread Archive
Last week when I was waiting for my injections, there were 4 patients with hemifacial spasm waiting with me. I asked them if they had considered surgery and they every one said they would never do it - they were terrified of "brain surgery." After hearing about the operation two years at the conference, I can't imagine that they wouldn't at least investigate - find the best doctors for it and have an evaluation. If I were offered a 95% chance of a cure for BEB, I'd sure be out there at least talking to doctors about it.



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Re: Hemifacial spasm

Re : Hemifacial spasm --- Virginia
Posted by Shirley-Arkansas-USA , Sep 04,2001,09:42 Top of Thread Archive
Hi Virginia,
I agree with you and I guess I just don't understand why more people don't opt for this cure. After hearing the speaker on Microvascular Decompression surgery at the 2000 Conference in Kentucky, I wouldn't have hesitated to go see him and have the surgery done. They had gotten really good results (which I don't think is the case everywhere) and seemed to have a handle on the way to do it. I wasn't quite as impressed this year with the talk but others might have been. You definitely would need to find the best doctors with the best track record.
Yes, it is brain surgery but like Virginia, I would be doing some checking into it.

Shirley in AR.




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Re: Hemifacial spasm

Re : Re: Hemifacial spasm --- Shirley-Arkansas-USA
Posted by Ann Doyle , Sep 04,2001,11:28 Top of Thread Archive
I had MVD surgery Oct 2000. The symptoms of Beb and Hemi are the same but the cause is different. With Hemi, the 7th cranial blood vessel is sitting on some nerves. They put a teflon pad between the two. The incision is behind your ear one inch by three inches.. I passed all the test for hemi but I was only spasm free for 2 days. I don't think that ever happened before. Even the 5% have some improvement. Mine kept getting worse because I also had BEB. Bad break and major disappointment. With the Mvd surgery, I only had a red thread sitting on the nerves that let me pass all the tests for Hemi.
I went back to have a second surgery and no longer past an EMsomething--They put pads on your face and put electricity through it to see if you spasm. So a second surgery wouldn't work and I was recommended to a movement disorder clinic where I found out I had BEB and started Botox.
There are some outstanding doctors doing this surgery. One was nominated top neurosurgeon of the year in Vienna in 2000. He developed the procedure and has done over 5,000. He worked with another Dr. who has developed a team of experts to work with him.
There is a 20 page web site showing drawings of the surgery. There is another site with 20 or so questions to ask a potential surgeon--such as ;Do you monitor for hearing during surgery?" If the answer is no, you go to another surgeion. There are after effects such as hearing loss in one ear sometimes but not as frequently if monitored. I would trade hearing loss in one ear for release from spasms and Meige. This and other side effects that may develop usually decrease and go away. Ann Doyle



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Re: Hemifacial spasm

Re : Re: Hemifacial spasm --- Ann Doyle
Posted by Shirley-Arkansas-USA , Sep 04,2001,13:43 Top of Thread Archive
Hi Ann,
Do they now think that your Hemifacial Spasm was BEB all along? That would be a shame after having gone through the MVD. Symptoms are the same except that BEB effects both eyes whereas HFS only effects one eye or one side of the face. There have been a few rare cases of HFS occurring on both sides, but that is very unusual.
I believe that an EMG is what you are referring to that shows the doctors what muscles are spasming.

When HFS first starts, it is frequently misdiagnosed as BEB. But BEB is always Bilateral (effecting both eyes).

Many of the things that you mentioned about looking for a good surgeon for MVD were discussed at the conference in Kentucky last year. Some of that information was brought up this year at Scottsdale. Or I might have missed some of it this year as when my eyes are closed, I don't hear very well.

Shirley in AR.

--modified by Shirley-Arkansas-USA at Tue, Sep 04, 2001, 21:01:42




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Re: Hemifacial spasm

Re : Re: Hemifacial spasm --- Shirley-Arkansas-USA
Posted by Ann Doyle , Sep 04,2001,17:22 Top of Thread Archive
Hi Shirley,
I believe I had Beb all along and that red thread brought on symptoms of HFS and some complications--like not being able to swallow so it wasn't a complete loss. Both eyes were sensitive to the light but one eye kept closing on the same side and the other one would close because it just seemed easier. One side of my face has always been worse than the other.
There are several really outstanding MVD surgeons in different parts of the country and I would want someone truly great to do it. Some are just adequate. The good ones say a good MVD surgeon should do at least a couple a week just to keep in practice. I have heard of only one bad one. After the surgery, the teflon pad slipped and the surgeon had to do the operation again. It slipped again. Then the patient went to one of the great ones.
The two sites mentioned earlier have many other links that are excellent for making choices and informed decisions. There is also a site about how to deal with insurance companies. Some of the doctor's offices are excellent at this, even if you are on an HMO and want to use a doctor not on your list.
As I said before, I was willing to go through it a second time to be spasm free. It is not an easy operation but the worst is over in 2 or 3 days usually but it takes 2 months to get energy back. All this is averages. Everyone is different. Ann Doyle



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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm --- Shirley-Arkansas-USA
Posted by Delaine Inman , Sep 04,2001,22:25 Top of Thread Archive
I sometimes think it is a little misleading to say BEB "Always" affects both eyes or it is hemifacial. For months my forceful spasms were left eye only...in the beginning both eyes blinked but only the left eye closed sometimes gently other times clamped shut. Later the right seemed to just go along for the ride too, but my left is definitely still the worst one even when both shut. It is more painful and gets tired quicker and is the one I have to prop up most often. The right is easier to open and feels different than the left. My left cheek feels like it is quivering or something crawling under my skin more often when I'm tired or had a bad eye day. The right cheek feels that way sometimes but not as bad. Now after Botox, my nose spasms equally on both sides. Any body else have that same experience??



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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Delaine Inman
Posted by Shirley-Arkansas-USA , Sep 05,2001,11:05 Top of Thread Archive
Hi Delaine,
I also started out with having one eye worse than the other. My right eye has always given me more trouble with the Left eye seemingly just following along. As things progressed, though, I could tell that both eyes were definitely having problems and pulling and squeezing closed although my right eye was always worse.
Since my surgery, my left eye is now worse than the right and seems to be the one that will squeeze closed before the right one does. Dr. A was much more aggressive with the surgery on the Right eye. He said that he had to do a lot more work on the right side.
I sometimes have quivering in my jaw or lip area. It is a real weird sensation.

I think that most of us have one eye that is worse than the other but I still think that both of them are affected in BEB. At least that is what all the literature says. One may even start acting up before the other one does, but they both are generally effected with the progression of the disorder. I think that we are saying the same thing but in different ways.

Shirley in AR.




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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Shirley-Arkansas-USA
Posted by Delaine Inman , Sep 05,2001,14:05 Top of Thread Archive
Shirley I wasnn't disagreeing with you, but with the way the literature puts it can sometimes be misleading to even doctors. Sometimes people don't get diagnosed correctly in the early stages because they are experiencing trouble with forceful closure of one eye. And new people coming to the BB looking for answers might think they don't have it if we say BEB always involves both eyes when in fact they may have BEB in the very early stages and the other eye just hasn't progressed or one eye may always be the bad guy the way we both have one that is worse than the other. That was the point I was trying to get across. Does that make sense?



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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Delaine Inman
Posted by Shirley-Arkansas-USA , Sep 05,2001,15:28 Top of Thread Archive
Yes, Delaine, it makes complete sense and I agree with what you are saying. I also think that sometimes one eye is so much worse that we don't even think that there is a problem with the other eye when in fact it is also symptomatic-it is just not noticed due to the overwhelming symptoms of the eye that is giving us the most trouble.

Shirley in AR.




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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Shirley-Arkansas-USA
Posted by kathy , Sep 05,2001,16:00 Top of Thread Archive
one of my eyes is much worse than the other. it hasn't been quite so noticeable with the celebrex, but the left one is the one that seems to control both. the right one does a sympathetic reaction to it.
odd that you should mention the hearing thing, shirley. i can't hear as well if i can't see either. i thought when one sense was worsened , the others sharpened, but it apparently is not always true.



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Re:Preoccupation with getting eyes to open

Re : Re: Hemifacial spasm or BEB with one eye worse? --- kathy
Posted by Shirley-Arkansas-USA , Sep 05,2001,16:46 Top of Thread Archive
Hi Kathy,
Regarding the hearing thing-when I am having difficulty with my eyes or having trouble getting them to open, I am concentrating on them and not what is being said. So, it is more of a preoccupation with trying to get my eyes to open and not really paying attention to what is going on around me (like a lecture).
I miss a lot of what is being said if I am struggling to get my eyes to open. So, it actually has nothing to do with my hearing which actually is very good.

Shirley in AR.




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Re: Re:Preoccupation with getting eyes to open

Re : Re:Preoccupation with getting eyes to open --- Shirley-Arkansas-USA
Posted by Ann Doyle , Sep 05,2001,16:56 Top of Thread Archive
Even before Beb, I had trouble hearing without my glasses. At first I thought maybe I was reading lips until I realized I needed my glasses to talk on the phone. No, I don't understand it. Ann Doyle



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Re: Re:Preoccupation with getting eyes to open

Re : Re: Re:Preoccupation with getting eyes to open --- Ann Doyle
Posted by Shirley-Arkansas-USA , Sep 05,2001,17:39 Top of Thread Archive
Ann, I have had the same problem before BEB when I wouldn't have my contacts in. I wasn't struggling then to get my eyes open but it did mentally bother me that I could not see as well, therefore I also had difficulty hearing. I think that our senses do work together (it is the particular feed back that our brains receive and get "used to"). Even talking on the phone, where you don't actually need to be able to see, if we are having perceived or real problems with another one of our senses, I believe that there is a preoccupation or distraction that hinders the other senses.
I don't think that it would hold true if one became or was totally blind or deaf as the brain would eventually adapt to that particular situation and might even compensate (like Kathy was alluding to) and heighten our other senses.

Clear as Mud, right? The brain is so complex.

Shirley in AR. who is preoccupied with the meatloaf that just got put in the oven and wondering what I am going to have with it. Scalloped potatoes I think would do.




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Re: Re:Preoccupation with getting eyes to open

Re : Re: Re:Preoccupation with getting eyes to open --- Ann Doyle
Posted by Delaine Inman , Sep 05,2001,19:15 Top of Thread Archive
I started wearing glasses when I was 13 years old and even then I hated going swimming or to the beauty shop because I could not hear when I could not see. It felt very weird. That is why I loved contacts and wore them off and on from the time I was 17 until the BEB started when I was 48. I had worn the disposable for at least 16 years and thought they were my problem because I slept in them almost every night and hated taking them out for any length of time. When the symptoms started I took them out and haven't put them back in since Jan. 99. I'm not sure I could stand them, but I still miss them so much.



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Re: Re:Preoccupation with getting eyes to open

Re : Re:Preoccupation with getting eyes to open --- Shirley-Arkansas-USA
Posted by kathy , Sep 07,2001,16:08 Top of Thread Archive
well that's the same thing because your ears are not being paid attention to then. i can see you have given this some thought. the struggle with one sense negates the other.



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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- kathy
Posted by Sally - in - Idaho , Sep 05,2001,19:09 Top of Thread Archive
I cannot hear if I can't see. But then, I am quite hard of hearing anyway and have most likely picked up a method of lip reading on my own through the years. I wish I could say that the hearing sense improved when the seeing sense started its rapid downward spiral, but that did not happen. If anything, my hearing loss is getting more profound. Very distressing, to say the least. Now, my voice is also getting hoarse and some days it's almost impossible to get a whole sentence out without constantly croaking and having to sip water. So I suppose it is going, too. What next?!

Sally in North Idaho




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Re: Hemifacial spasm or BEB with one eye worse?

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Delaine Inman
Posted by Sally - in - Idaho , Sep 05,2001,19:05 Top of Thread Archive
Hi Delaine,

My left side is definitely the worst in everything. It is the side that is totally blocked with chronic sinusitis, as shown in various x-rays and CT scans. The left eye is the most painful, and my headaches are in the left temple and above the eye ... from the straining and extensive squinting on that side. It has been especially bad lately and driving six miles to and six miles back to get gas today sent me to bed with a headache for a nap. Of course, it didn't help that I had just gone to a luncheon under those blasted fluorescent lights! I excused myself and left in about an hour.

It is also the left side of my face that gets all tingly from my cheek bone down into my neck and shoulder when I am really tired or stressed. Before they came up with the BEB diagnosis, the doctors thought I had possibly had a TIA (mini stroke) on that side. After the BEB diagnosis, they weren't sure, but have kept me on a blood thinner. I'm wondering if that was necessary.

I would not be surprised if most of us have one side that is more afflicted than the other.

Sally in Idaho




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One side worse ...

Re : Re: Hemifacial spasm or BEB with one eye worse? --- Delaine Inman
Posted by Moderator-JB , Sep 05,2001,23:00 Top of Thread Archive
Delaine:

My left side has always been dramatically worse than the right. Others seem to relate much the same scenario. Must have been those childhood trips to the outhouse in the dead of winter :)

As with you I started blinking with both eyes but when the disorder settled in within a few months the left side was always the pain, both literally and figuratively.

Take care,

Judy




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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by kathy , Sep 03,2001,05:45 Top of Thread Archive
i'm sorry you have to have so many injections. do you have beb as well as the hemifacial spasms?



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Ann Doyle , Sep 04,2001,11:43 Top of Thread Archive
Sorry , I can't get it to edit one of the links. It is groups.yahoo.com/group/cofhfs/chat. Then click "messages" on the left to get to bulletin board. Ann Doyle



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Re: has anyone actually moved because of their BEB?

Re : has anyone actually moved because of their BEB? --- kathy
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Sep 04,2001,22:29 Top of Thread Archive
About the MVD surgery, Yes I have thought about it, and have read the info on the other web sites about it. I am 72, and the botox is working pretty good for me. I have some other medical problems I am dealing with at the present time.Some of the results are scary. I am not going to get it done at the present time, in the future? Maybe. Edith



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Re: has anyone actually moved because of their BEB?

Re : Re: has anyone actually moved because of their BEB? --- Edith Nalepa
Posted by Ann Doyle , Sep 05,2001,07:55 Top of Thread Archive
Hi Edith, I had MVD when I was 70. I thought I would be the oldest but far from it. Many are in their 70's, some 80's and I believe there was even a 90 year old. And that is just the one's that post on the site. As long as Botox works for you, that's great. Just remember that there MAY be an alternative for you. Ann D.



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