Eye pain


Posted by R Elias , Mar 13,2001,20:30   Archive
I went to my neurologist today for my botox injections and I mentioned to him that I was having a lot of pain in my brows and temple area and he said he had never heard of anyone who has blepharospasm to have pain. That made me feel like I was not believed. I am also developing a small hump on the back of my neck at the base between the shoulder blades, which is also very painful, and he looked at it by pulling back the collar of my t-shirt and said that was normal and there was nothing wrong. My wife and family have looked at it says it looks swollen, but I don't think he could see that by just pulling back the collar of my shirt. I also mentioned the possibility of having a myectomy and he said No, that he doesn't believe in them. Does anybody else have bad pain around the eyes, brows, temples, in the face?

Thank you Virgina for answering my previous post. I e-mailed Dr. Anderson requesting information about the full upper & lower myectomy and any other information he could give me about having the procedure done. I guess what has me convinced is on page 2 of the BBB was M. Chaisson's post regarding his own myectomy. I respect my doctor, but I want to be believed when I say that something is happening to me. He has been the only neurologist that I have seen since I've had dystonia, 6 1/2 yrs. He is the one that diagnosed me. I have gone through many angry times with him through out the years and today I asked my wife,'I wonder if it is God's will that I am still with him or is it my own fear that keeps me from going anywhere else?'. I'm just frustrated about all this and needed to vent. Last time I saw him I made him aware that my foot was spasming and turning inward and he is aware that I'm having other problems with my back and he didn't want to check these things out. He just tells me to take my meds and that there is nothing he can do about it. I know that's true, but shouldn't a doctor look at it anyway. Thanks for your support. I know that I have the support of God, my wife, family and friends, and even my doctor, but I am just aggravated. Thanks for listening. God bless.--Rolando




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Re: Eye pain

Re : Eye pain --- R Elias
Posted by Shirley-Arkansas-USA , Mar 13,2001,21:36 Top of Thread Archive
Rolando,
Blepharospasm can and does indeed cause pain in the areas you described. Without the botox or when it starts to wear off, I will start developing headaches and pain in my forehead, temples and even cheeks. The constant pulling, squeezing and spasms can cause great discomfort in this area. If your doctor has never heard of anyone having pain or headaches from the spasms, he knows very little about Blepharospasm or what is going on around your eyes with it.
He also should have looked at your neck/back area that you say is swollen or has a hump there. This could be indicative of other things.

I have an upper myectomy scheduled for April 17th by Dr.Anderson.

I think that you need to get another opinion. You have a right to be aggravated. See if you can find another neurologist that is a movement disorder specialist. Do yourself this favor. You are not being treated right.

Shirley in AR.




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Re: Eye pain

Re : Re: Eye pain --- Shirley-Arkansas-USA
Posted by R Elias , Mar 14,2001,19:52 Top of Thread Archive
Thank you to everyone for all the posts and support. I really appreciate it. I will mention the Celebrex to my doctor.

Shirley, I was wondering how you got referred to Dr. Anderson to do the myectomy. I won't be able to change doctors until sometime in June, since that is the way my wife's insurance works. My brother called me this afternoon and asked me all kinds of questions about this myectomy. He sounded very concerned, but was very supportive. He let me know that should I get a chance to have a myectomy that he would fly my wife and I whereever we need to go in his airplane. I also wanted you to know that I am wishing the best for you on April 17th and hope all goes well. I hope you are all doing well. God bless--Rolando




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Re:Myectomy and referrals.

Re : Re: Eye pain --- R Elias
Posted by Shirley-Arkansas-USA , Mar 14,2001,20:58 Top of Thread Archive
Hi Rolando, About the referral to Dr. Anderson, we'll just say that I was self-referred. He has done more myectomies than anyone else. Over 800. I met him at the BEB conference in Kentucky last August. I had heard a lot about him and read some of his articles and knew that he was very active with the BEBRF and their conferences(he also creates a lot of business for himself this way) I have watched his video that I got from the BEBRF that shows the actual surgery. (NOT for the squeamish). After meeting him and listening to his lecture at the conference, he just made a lot of sense to me with what he said and how he goes about things. Not to mention that he is very personable, has a great sense of humor, extremely knowledgeable about BEB and Apraxia, and wears great boots. I have been on this bb or reading it for approximately 2 years and have read what everybody has to say about their surgery and what they had done and what results they obtained. Dr. Anderson seems to have the best record of success. It is not a cure, but only another treatment option. I will still have BEB and still have to get botox and still have light sensitivity but with a little surgical help, I hope to have some improvement. How much, only time will tell, but at this point, I'm very willing to give it a try. Dr. Perlmutter in St.Louis gives me my botox and is also very active in BEB and dystonia research and is very current with his knowledge. My husband and I make a 7 hour trip every two months to go see him for my botox as I was not at all happy with my choice of local doctors. I have found a movement disorder specialist here locally that hopefully I will be able to see for my botox after my surgery. He is a very kind man and easy to talk to but his experience with Blepharospasm is limited. I picked Dr. Anderson myself, as I feel that he is the best here in the USA. I will be going from Arkansas to Salt Lake City but I feel that it is worth it. There are other doctors closer to me that have good reputations but they are my eyes and I want the best doctor I can find to do this. My insurance has given me the go ahead with the exception of the cosmetic part of it (re-arrangement of my fat where the muscle is removed.) I'll be paying for that out of pocket. I plan on posting everything that I can about the surgery in order to help someone else. Virginia and Cynthia did an excellent job recently responding to my requests for post op reports after their myectomies. One done by Dr. Anderson and the other done by Dr. Patrinely. I'm sure that Alan Phair will be telling us more about his lower myectomy that Dr. Anderson performed on him on the 8th of this month.
If you could find a way to get to the next BEB conference in Arizona this August 17-19, I think that you would find it very worthwhile. Dr. Anderson would be there and he makes himself available to see people that want his advice. You just stand in a short line and he gives you a free evaluation. You would learn more about treatment options and how a doctor should treat you as a patient. It is all very insightful and every one there has the same problem or their spouse does so it's impossible to not fit in. You could meet Dr. Anderson and other doctors there and decide what you want to do or where you should go. I wouldn't hesitate to recommend Dr. Anderson to you but you also have to know that he is a surgeon and that is what he will recommend. I would suggest that you see a very good MDS first that is very knowledgeable about BEB and current on things and then go from there.
Sorry, that this is so long.

Shirley in AR.




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Re: Re:Myectomy and referrals.

Re : Re:Myectomy and referrals. --- Shirley-Arkansas-USA
Posted by R Elias , Mar 14,2001,21:34 Top of Thread Archive
Hi Shirley, Thank you for the information and it wasn't too long it's just what I needed . That was very helpful thank you. God Bless.......
Rolando



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Re:Arizona

Re : Re: Eye pain --- R Elias
Posted by Shirley-Arkansas-USA , Mar 14,2001,21:21 Top of Thread Archive
It's me again Rolando, Just looked at your author profile and see that you are from Arizona. You better be at the conference young man, since you live in the state where it is being held. I may have to have my husband stop off and pick you up from where ever in Arizona if you think that you are not going. I will be there and I will expect to meet you.
There is also a Dr. Mark Stacy in Phoenix who I met at last years conference who I was real impressed with. He is a neurologist who specializes in movement disorders. He would be a good choice or someone in his group. I believe that they are at a teaching hospital there in Phoenix.

Shirley in AR. Who better meet Rolando at the conference. Make your plans. I can be real pushy.




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Re: Re:Arizona

Re : Re:Arizona --- Shirley-Arkansas-USA
Posted by R Elias , Mar 14,2001,21:43 Top of Thread Archive
Wow !!!!! I get to meet you in person . God willing, I'll be there.
Thanks again !!! Rolando



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Re: Re:Arizona

Re : Re: Re:Arizona --- R Elias
Posted by Shirley-Arkansas-USA , Mar 14,2001,21:47 Top of Thread Archive
Way to go Rolando. I'm looking forward to meeting you. You won't be sorry that you went. It will do you a world of good. You'll be better able to get a handle on things and help your self to make decisions.

Shirley




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Re: Re:Arizona

Re : Re:Arizona --- Shirley-Arkansas-USA
Posted by Evelyn , Mar 14,2001,21:51 Top of Thread Archive
Shirley,
When is the conference in AZ? I graduated from Thunderbird Academy in Scottsdale, AZ. My roommate still lives in AZ. So do several others that we know. My youngest brother and his wife are en route to AZ for a temp job. I also have a niece and family who live in AZ. We'd like to take a trip there soon. I thought maybe the conference might be at a time we could go. Would be fun to meet some of you. Will it be in Pheonix?
Evelyn



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Re: Re:Arizona

Re : Re: Re:Arizona --- Evelyn
Posted by Shirley-Arkansas-USA , Mar 14,2001,21:59 Top of Thread Archive
Hi Evelyn,
The conference is going to be August 17-19. It is going to be in Scottsdale, AZ. Make your plans for that time and meet some of us. I would love to meet you. You've got to do it.
It will be at the Mountain Shadows Marriott Resort and Golf Club.
Shirley



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Re: Re:Arizona

Re : Re: Re:Arizona --- Shirley-Arkansas-USA
Posted by Evelyn , Mar 15,2001,15:58 Top of Thread Archive
Thank you, Shirley,
I will talk it over with my husband. Maybe I'll feel more like traveling in August.
Evelyn



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Re: Re:Arizona

Re : Re:Arizona --- Shirley-Arkansas-USA
Posted by Carol Thoma , Mar 14,2001,22:01 Top of Thread Archive
Shirley,

I checked the BEBREF and all that I could find out about the conference was that it will be held in Phoenix in August or September. I did send an e-mail asking for more information, but can you tell me a little more about it while I wait for their response? I live in Tucson, only about 120 miles from Phoenix, and if I can get off work and if I can find some sort of transportation since I can't drive that distance myself, I'd be interested in attending. Thanks for any info you can give me. (Also good luck with your surgery, which is scheduled for the day after my birthday. Easy to remmember!)

Carol




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Re: Re:Arizona

Re : Re: Re:Arizona --- Carol Thoma
Posted by Virginia , Mar 14,2001,22:10 Top of Thread Archive
There was an announcement in the last BEBRF newsletter. It didn't say much of anything beyond what Shirley posted above (Scottsdale, AZ, Aug. 17-19, Mountain Shadows Marriot Resort). I'm sure there will be more info available soon.
Virginia in AL, planning to be there, too, but won't drive.



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Conference

Re : Re: Re:Arizona --- Virginia
Posted by Catherine Pender , Mar 15,2001,10:31 Top of Thread Archive
Gee guys and gals. Could they not pick a drier place than Scottsdale! Even when I get a free chance (on the companny) I choose not to put myself throught the agony of even drier eyes. Most of us do suffer from dry eyes and are very sensitive to the bright sun. Surely they could have found another place that is in the off season as well for the cheaper rates.
Just voicing my opinion as I can't go anyway. We will be taking our son to Concordia University which is in Montreal, that week. Good luck to all those that go.

ps I have heard that they have misting machines around so take your bathings suits of unbrellas !




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Re: Conference

Re : Conference --- Catherine Pender
Posted by Carol Thoma , Mar 15,2001,11:16 Top of Thread Archive
Actually, Catherine, August is the "monsoon season" in Arizona, so if it's a good year for rain, you WILL need your umbrella--also your camera for some spectacular thunderstorms. (The heat, if it doesn't rain, is another matter. The highs will be in the 100s.) By all means check the weather forecast before you come, and be prepared for just about anything from drought to flash floods. We don't have hurricanes here, but the wind gusts can get up to 50 mph in a good storm. (See my wild flower message for why I think they scheduled the conference in Scottsdale in August!)

Carol




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Re: Eye pain

Re : Eye pain --- R Elias
Posted by June in Toronto (June Floyd,June in Toronto), Mar 14,2001,05:53 Top of Thread Archive
Rolando, I agree with Shirley, you need another movement disorder neurologist. I experience eye pain when the botox is running down and after the injections for 3-4 weeks. There's a post on this bb (page 1, I believe) about CELEBREX for this eye pain - which has been used with great results.
You doctor definitely should have checked your problem areas - THERE IS SOMETHING HE CAN DO - so if he won't/can't GO ELSEWHERE.

God Bless

June in Toronto




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Re: Eye pain

Re : Eye pain --- R Elias
Posted by Moderator-JB , Mar 14,2001,07:43 Top of Thread Archive
Rolando:

It sounds like you need to find a MDS (Movement Disorder Specialist)

I have pain behind my eyes and in the temple area.

Botox in your foot can help with it turning in.

Judy




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Re: Eye pain

Re : Eye pain --- R Elias
Posted by grace anne , Mar 14,2001,09:37 Top of Thread Archive
I am so sorry you have to go through this. I know the feeling of telling a doctor about a lump or whatever and it is totally disregarded as if you, the patient, has "used up your number of complaints for the year". I have had a lot of eye pain as well as pain in the temples, around the eye and forehead. I also had a doctor who didn't believe in the myectomy and said she didn't know of any doctors nor info on it except that it was too dangerous and risky. I think I would be contacting the foundation for a name of another doctor in your area. You owe it to yourself and family to do what's right for you, and since you don't feel comfortable with this doctor, it's time to change physicians. Even if you never get the myectomy, at least find one who will listen to your concerns and check them out for you. I wish you luck.

graceanne in port orchard




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Re: Eye pain

Re : Eye pain --- R Elias
Posted by kathy , Mar 14,2001,13:32 Top of Thread Archive
hi Rolando, i'm the one who posted on Celebrex for eye pain. i have had severe to sometimes excruciating pain around my eyes when they cramp and squeeze, the celebrex is working pretty well for this pain problem. you definitely need a new doctor. good luck



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Re: Eye pain

Re : Eye pain --- R Elias
Posted by Sally - in - Idaho , Mar 14,2001,16:50 Top of Thread Archive
Rolando ... I get an ache/pain in those areas when I am tired and my eyes have been under strain from trying to keep open. The spasms are still there underneath doing their dirty work and wearing out the muscles. You are not imagining things. I hope you find relief soon.

Sally in North Idaho




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