botox injection for blepharospasm disaster

I had been suffering from Blepharspasm, double...

I had been suffering from Blepharspasm, double vision and dry eyes for three years and my symptoms are getting worse. After many trips to eye doctors including Neuro Opthromologist out of my Network of Doctors. I was having many other symptoms and so he sent me to a MS Neurologist to see if they could figure out what was causing my problems with my eyes and other symptoms. The Neuro Doctor diagnosed me with Blephrospasm but didn't want to inject Botox until he knew what was causing it along with my other eye problems. When I got to the MS Neurologist he too noticed the Blephrospasm and wanted to inject Botox but didn't have clearance from the Insurance Company so I agreed to pay ti whole $850 as we were going on vacation in three days and I thought I would have a better vacation and I acted out of desperation. This doctor had me lay down for the injections. Not two days later I felt a hard tugging on my left eyelid and thought it was working and opening my eyes but it did the opposite. The next thing I know my left eyelid had totally collapsed and I was unable to open it. It was also tugging on the right eye and so I had trouble keeping it open. I spent my vacation with my eyes closed and my husband leading me around. It was as if I was blind.I got on the Internet to read about Droopy eyelids after Botox and one of the first things I read is that you are supposed to be in an upright position for the injections and sitting up for 3-4 hours after. This doctor had me lay down.I will never go through this again as this experience has been worse then what I was treated for and far more scary.I wear double vision glasses and since the Botox and the droopy eyelid they do not work right now. I think my eye is slowly coming open but just when i think it is the later in the day it gets the droopier it gets. It's been over a week now. Can anyone give me an idea how long this last and I hope not until the Botox wears off in three months. There is $850 down the tubes. Since this the Insurance Company has approved it but it would cost me $295 for the Botox and $60 co-pay for the doctor to inject it. I DON'T THINK SO.

UPDATE

I think I am slowly getting better into my third week but hate getting up every morning wondering what this day will bring. I'm tired of holding my eye open with my fingers. I am hoping to wake up one day and my eyes open like God intended. I don't know how people survive with one eye as it is so awkward and off balance. Not much more to tell but I am told this poison wears off and it is poison, so just waiting it out. Becky

Three weeks and two days

I'm still waiting. When I get up in hte morning I feel my best after I have had warm eye pillows and used eye drops on and off all night. I'm not up more then a half hour when I lose it again. My eyes are just so tored and I have trouble keeping them open. I feel like a freak and weak sunglasses to hide my eyes. I've gotten some responses from doctors on this site and they have actually upset me. Th9is one doctor said if you have droopy eyelids after Botox for Blephrospasm then it actually worked as that is what it is supposed to do to relax the muscles/ He assumed also that I got relief from the Blephrospasm. Blephrospasm is eye muscle twitching and forced closure of the eyes. I had trouble keeping my eyes open before so how has it helped. This is worse then the Blephrospasm. At least before my eyes were equal and I would get relief now and then. There is no relief from this until it wears off. He said if you had trouble this time the doctor can inject less the next time. I didn't get a chance to tell him there will be no next time. My brain feels like mush. Why don't these doctors tell you anything, there should be before and after instructions.They never discuss side effects. in fact I think it is a gimic and they don't want to tell patient's this as there is too much to be made off it. Ladies don't let your vanity make these guys rich. Before you know it they will be treating everything with Botox. I asked e doctor about they lying down for the injections and he completely ignored that question. I think Doctors protect themselves and stand up for other doctors like policemen do. Botox for Migraine Headaches, Botox causes headaches.

GOOFED

Try to overlook the spelling errors. I'm having trouble seeing.
prefer not to say

He seemed sincere enough but I would never have him do it again. There is a small chance of this happening if done right and having me lay down was a red flag.

5 out of 5 stars Overall rating
5 out of 5 stars Doctor's bedside manner
5 out of 5 stars Answered my questions
5 out of 5 stars Time spent with me
5 out of 5 stars Staff professionalism & courtesy
5 out of 5 stars Wait times
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Comments (4)

I am sooooo sorry to hear this story. When I responded to you earlier I did not understand the "spasm" diagnosis and I was going off about a different issue entirely. I'm so sorry! To notice any improvement did not take 3 months as Ialso dreaded...but it took me a good six weeks. I like to think I help it along by hot wash cloths steam treatment of my eyes and eyebrows. But that's just me wanting to do something to make something happen! Hearing about your experience makes me so sad, and I'm so glad we found each other (botox survivors) to help us through. Try to just destress, use hot steam, and feel some relief that it should begin to relax in 6 weeks. My improvement was subtle...but definitely enough to make me less crazed! Tell me this...have you been diagnosed with MS? Did the neuro connect this eyelid drooping to that? Or were they reaching for the stars???
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I have not been diagnosed with MS yet. The Neurologist said he doubted I had MS but the etiology is unclear. I had a brain MRI done by another Neurologist that I took to him and he said it is irregular but doesn't know what it is so he is having another MRI done August 6 with dye this time and I should know the same day. I hope it doesn't take a full six weeks because one vacation was already ruined and I'm taking two of my grandsons on vacation August 13. I'm into my second week of this. Had it done June 30. Went shopping today with my husband and what a pain. The Botox has made my double vision worse and my vision is blurry. You don't notice how busy a shopping center is until you can't see. I'm 67 but thank God I don't have hardly any wrinkles. I use over the counter products for that. In fact right now I'm using Robin McGraw's REVELATION (Dr. Phil's wife) Before the Botox I had 20/20 vision for distance. If I'm sitting alone and stay still and lift my eyelid I see clearly but then my eye starts burning because I can't blink while holding my eye open. The doctor is going to have to come up with something else for my spasms as NO MORE BOTOX FOR ME.
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Okay Sandra I found it and thank you. You are very encouraging. I'm hoping mine will be faster since it is just the eye lid.
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I might add. My eyelid did not droop before the Botox, in fact I thought I had droopy eyelids as I could not keep my eyes open. My Neuro eye doctor said that he saw no droopiness but he did see Blephrospasm as I was constantly blinking.
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