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Blephoraspasm W/Apraxia - my Long Journey
Please bear with me on this long, but I share with the hope that if even one person identifies with a part of this story, they will know there can be relief.
It took over 3 years to diagnose my condition of blepharospasm, and it was a lonely frustrating journey along the way. I will not list the doctors that were unable to help me, as I hold nothing against them, they just didn’t have the knowledge to diagnose or fix my problem.
In March of 2015, I noticed a “distraction” with my eyes..excessive blinking and winking. I visited my primary care doctor. He thought my condition was dry eyes so he referred me to an optometrist. I had no relief so I visited another optometrist based on a recommendation of my friend. This doctor recommended heat compress, eye wipes, vitamin e, and eye drops.
Without relieve, I went back to my primary doctor, who referred me to a specialist at the Center for Eye Sight. It took nearly six months to get in for the appointment. At that time, the ophthalmologist stated that the skin above my eyes was weighing down my eyes. That the solution would be to reduce the skin above the eyes, but a forehead lift would be needed for optimal relieve. She stated that would not be covered by my insurance as considered cosmetic. I researched a good doctor and elected to pay for the procedure myself to ensure relief.
The surgeon did an excellent job, but there was no relief for my eyes. They were still heavy, difficult to keep open, and especially painful when driving.
Again, on the advice of a friend, I visited another ophthalmologist in Las Vegas. He was very understanding, tried some eye plugs, as he wanted to continue to treat for dry eyes. When I had no relieve, and told him about some research online regarding blepharospasm, I asked him if that was possible. He said it may be early stages, and he referred me to another doctor who specialized in botox. She ultimately gave me botox injections. The first time, it made it so that I could not close my eyes all the way, which was an issue, but initially seemed to help. Although I did not like NOT being able to close my eyes, I eventually became desperate and tried the botox shots again. They worked for a day, but no extended relief. This doctor stated at that I didn’t really match blepharospasm symptoms.
On the verge of giving up, and resigning to the fact that I may just never be able to drive and function normally again, I had another friend provide a referral to yet another ophthalmologist. She was wonderful, did some tests for Myasenia Gravis, those turned out negative, but she still believe neurological. She referred me to a neurologist, who refused to see me because, based on the information the doctor sent over, this doctor determined they could not help me without even seeing me. This neurologist office thought a neuro ophthalmologist would be the only doctor that could help, and stated that there were none in Southern Nevada. Turns out that was one that I found, but my current would not recommend, and this particular doctor’s office would not return my call to set an appointment. I gave up after four non-returned messages requesting a call back to set up the appointment.
Around February of 2017, something new began to happen… when I was resting and closing my eyes (usually getting ready for bed at night), I would experience face tremors or spasms and, during the day, I became more aware of being extremely tired even though I may have had 7 hours sleep. This results in, at times, yawning constantly.
I had some stern talks with myself to “open your eyes!!!” almost all the time throughout the day.
Because there were no recommended neuro opthamologist in Las Vegas that would see me, I scheduled an appointment in July of 2017 with a doctor at Cedar Sinai. He ran multiple tests and diagnosed dry eye with resulting blephoraspasm. His recommendations were drops and flaxseed oil, but I didn’t have any relief.
I tried acupuncture with no relief.
I heard about a technique offered from another opthamologist in Las Vegas, and the technique was called Lipiflow. He used that in conjuction with Xiidra eye drops and put in punctual plugs. There was no relief and my condition seemed to worsen.
Eventually this doctor told me he was unable to help my any more and I needed to see a neuro opthamologist. I found a doctor that fit the bill, he was at the Center for Sight, which is where I started in September of 2015. I saw Dr. Liang initially, she scheduled me for an MRI and then an appointment with that nuero opthamologist, Dr. Salinas. After reviewing the MRI and talking with me during the appointment, Dr. Salinas concluded that I had blephoraspasm with apraxia, and it was very rare. He recommended me to Dr. Digre with John A Moran Eye Center in Salt Lake City.
By the time I got to Dr Digre, my symptoms were bad. Often my eyes ache and it was painful to look up, to be in sunlight, to drive, and to focus on writing. I continued to have spasms in my cheeks right below my eyes (I only noticed when I was ready to go to sleep and am totally relaxed). Sometimes I would wake up because my eyes seem to be clenching shut, they ached and I would have to open them and make them “relax” when closing them again. Finally, in the last several months, I have noticed that my left eye doesn’t respond as quickly as the right. I “tell” my eyes to open, one would open faster than the other.
When I went to see Dr. Digre in April of 2018, I was desperate to find answers. I had tried everything the doctors prescribed. From drops to gel to warm socks over my eyes. From humidifier to flaxseed oil. Surgery to lift my brow. Tear duct plugs. The special process called Lipiflow. Botox Shots. My problem had deteriorated to the point that my eyes spasmed so often that it made it difficult to drive, run, hike, even work.
Dr. Digre and her staff made me feel like the most important person in the world. They eventually referred me to Dr. Buphendra Patel (he works in Salt Lake City as well as St. George). His knowledge, his expertise, his caring, and most of all the botox treatment that he has given me (and will continue to provide every three months) has literally turned my life around. I had botox before but it was not the dosage or the position of the muscles that it needed to be. His technique, the amount of time he took to listen to me and understand the issue…it has changed my outlook on what life is for me. While it’s not perfect, and I will never be exactly as I was before, I can now enjoy my life again. I can drive, I can work, I can hike on the weekends. I have my life back.
I know this is a long story and I’m sorry if it repeats too much. I felt like I was the only on the planet with this condition. It was taking away everything I loved to do. And to discover that it was possible to have all that back because of a few amazing doctors that are caring, professional, and design their practice around truly learning what the issue is and providing some relief to that….well, that deserves to be shared, if for no other reason to recognize Dr. Digre and Dr. Patel and their staff for the amazing and awesome job they are doing.
But if you are like me and suffer these same symptoms, please do not despair. You are not alone and there is help available!
It took over 3 years to diagnose my condition of blepharospasm, and it was a lonely frustrating journey along the way. I will not list the doctors that were unable to help me, as I hold nothing against them, they just didn’t have the knowledge to diagnose or fix my problem.
In March of 2015, I noticed a “distraction” with my eyes..excessive blinking and winking. I visited my primary care doctor. He thought my condition was dry eyes so he referred me to an optometrist. I had no relief so I visited another optometrist based on a recommendation of my friend. This doctor recommended heat compress, eye wipes, vitamin e, and eye drops.
Without relieve, I went back to my primary doctor, who referred me to a specialist at the Center for Eye Sight. It took nearly six months to get in for the appointment. At that time, the ophthalmologist stated that the skin above my eyes was weighing down my eyes. That the solution would be to reduce the skin above the eyes, but a forehead lift would be needed for optimal relieve. She stated that would not be covered by my insurance as considered cosmetic. I researched a good doctor and elected to pay for the procedure myself to ensure relief.
The surgeon did an excellent job, but there was no relief for my eyes. They were still heavy, difficult to keep open, and especially painful when driving.
Again, on the advice of a friend, I visited another ophthalmologist in Las Vegas. He was very understanding, tried some eye plugs, as he wanted to continue to treat for dry eyes. When I had no relieve, and told him about some research online regarding blepharospasm, I asked him if that was possible. He said it may be early stages, and he referred me to another doctor who specialized in botox. She ultimately gave me botox injections. The first time, it made it so that I could not close my eyes all the way, which was an issue, but initially seemed to help. Although I did not like NOT being able to close my eyes, I eventually became desperate and tried the botox shots again. They worked for a day, but no extended relief. This doctor stated at that I didn’t really match blepharospasm symptoms.
On the verge of giving up, and resigning to the fact that I may just never be able to drive and function normally again, I had another friend provide a referral to yet another ophthalmologist. She was wonderful, did some tests for Myasenia Gravis, those turned out negative, but she still believe neurological. She referred me to a neurologist, who refused to see me because, based on the information the doctor sent over, this doctor determined they could not help me without even seeing me. This neurologist office thought a neuro ophthalmologist would be the only doctor that could help, and stated that there were none in Southern Nevada. Turns out that was one that I found, but my current would not recommend, and this particular doctor’s office would not return my call to set an appointment. I gave up after four non-returned messages requesting a call back to set up the appointment.
Around February of 2017, something new began to happen… when I was resting and closing my eyes (usually getting ready for bed at night), I would experience face tremors or spasms and, during the day, I became more aware of being extremely tired even though I may have had 7 hours sleep. This results in, at times, yawning constantly.
I had some stern talks with myself to “open your eyes!!!” almost all the time throughout the day.
Because there were no recommended neuro opthamologist in Las Vegas that would see me, I scheduled an appointment in July of 2017 with a doctor at Cedar Sinai. He ran multiple tests and diagnosed dry eye with resulting blephoraspasm. His recommendations were drops and flaxseed oil, but I didn’t have any relief.
I tried acupuncture with no relief.
I heard about a technique offered from another opthamologist in Las Vegas, and the technique was called Lipiflow. He used that in conjuction with Xiidra eye drops and put in punctual plugs. There was no relief and my condition seemed to worsen.
Eventually this doctor told me he was unable to help my any more and I needed to see a neuro opthamologist. I found a doctor that fit the bill, he was at the Center for Sight, which is where I started in September of 2015. I saw Dr. Liang initially, she scheduled me for an MRI and then an appointment with that nuero opthamologist, Dr. Salinas. After reviewing the MRI and talking with me during the appointment, Dr. Salinas concluded that I had blephoraspasm with apraxia, and it was very rare. He recommended me to Dr. Digre with John A Moran Eye Center in Salt Lake City.
By the time I got to Dr Digre, my symptoms were bad. Often my eyes ache and it was painful to look up, to be in sunlight, to drive, and to focus on writing. I continued to have spasms in my cheeks right below my eyes (I only noticed when I was ready to go to sleep and am totally relaxed). Sometimes I would wake up because my eyes seem to be clenching shut, they ached and I would have to open them and make them “relax” when closing them again. Finally, in the last several months, I have noticed that my left eye doesn’t respond as quickly as the right. I “tell” my eyes to open, one would open faster than the other.
When I went to see Dr. Digre in April of 2018, I was desperate to find answers. I had tried everything the doctors prescribed. From drops to gel to warm socks over my eyes. From humidifier to flaxseed oil. Surgery to lift my brow. Tear duct plugs. The special process called Lipiflow. Botox Shots. My problem had deteriorated to the point that my eyes spasmed so often that it made it difficult to drive, run, hike, even work.
Dr. Digre and her staff made me feel like the most important person in the world. They eventually referred me to Dr. Buphendra Patel (he works in Salt Lake City as well as St. George). His knowledge, his expertise, his caring, and most of all the botox treatment that he has given me (and will continue to provide every three months) has literally turned my life around. I had botox before but it was not the dosage or the position of the muscles that it needed to be. His technique, the amount of time he took to listen to me and understand the issue…it has changed my outlook on what life is for me. While it’s not perfect, and I will never be exactly as I was before, I can now enjoy my life again. I can drive, I can work, I can hike on the weekends. I have my life back.
I know this is a long story and I’m sorry if it repeats too much. I felt like I was the only on the planet with this condition. It was taking away everything I loved to do. And to discover that it was possible to have all that back because of a few amazing doctors that are caring, professional, and design their practice around truly learning what the issue is and providing some relief to that….well, that deserves to be shared, if for no other reason to recognize Dr. Digre and Dr. Patel and their staff for the amazing and awesome job they are doing.
But if you are like me and suffer these same symptoms, please do not despair. You are not alone and there is help available!
Provider Review
Oculoplastic Surgeon, Board Certified in Ophthalmology
1025E 3300S, Salt Lake City, Utah