My Right Eyelid Started to Droop
I am a 50 year old woman with a husband, 3 college-aged children, and 1 spoiled dog from the pound. I worked with newborns and their moms in both the hospital setting and visited them in their homes after discharge. I have a large supportive family (9 brothers and sisters) and have been blessed to be on many prayer lists since this all started.
21 August 2003
In October 2002, my right eye started having distorted vision for moments at a time and I went to the eye doctor to have my glasses adjusted as I thought that my bifocals were out of alignment. They adjusted the glasses that morning and by the afternoon the headache that I had been having for the last 2 weeks continuously that I thought was due to a cold and sinus infection that was lingering was bad enough to send me to my local doctor. He looked at me and asked about the cold, questioned me about migraines and sent me on my way with a prescription for an antibiotic.
The next day I called my eye doctor and explained my symptoms and was seen right away. This doc immediately ordered a MRI that morning which revealed nothing to the radiologist who read it. I was sent home and by the next day, my right eyelid started to droop and by Monday, my eye was completely closed and I again called the eye doctor and was seen and sent to a neuroopthamalogist who looked at my MRI and then ordered a battery of tests including both spinal tap and x=ray as well as lab work.
All came out normal for the next 5 1/2 weeks I wanted to go somewhere else for a second opinion as the headache was still terrible and I spent most of my time in a darkened, quiet bedroom away from all stimulus and taking pain meds by the bottle. The doctor then ordered another MRI which they called and said was normal and scheduled me for another spinal tap for the next afternoon.
As I sat in the waiting room, the office received a call from radiology stating that they now thought something was seen. The spinal tap was canceled and an angiogram was ordered for that same night. I was informed that I did have an anuerism and would have surgery that next Monday. My neuro doctor would not let them send me home and I had surgery early on Sunday morning with almost all my family there to pray and wish me well.
As this was the Sunday before Thanksgiving and people want to travel, I was sent home on Thanksgiving Day. My eye did not start to open until approximately 4 weeks later. I had some excruciating headaches during this recovery phase when the eye started to react. Apparently, my anuerism was pressing on the nerve to my eye and after it was clipped the nerve has to regenerate itself and this process may take 6 to 12 months or more.
My right eye is still not open all the way. The pupil is not completely dilated as it was, but does not react to light the way it should and the sunshine really bothers me. The movement of my eye left and right has returned almost completely, but my eye remains paralyzed in the up and down movement still. I also have double vision due to the fact of not being able to look up and down.
My headaches are not as strong,but I still have them and take Ibuprofen for them probably 10 times a week. I am wondering if anyone else has had similar symptoms for this length of time and if anyone could steer me toward any doctors in the Illinois area that they could recommend. They are thinking of sending me to a doctor who could possibly do plastic surgery on my eyelid and I have new glasses ordered because my vision is now more blurred in that eye as well as they want to try a prism lens.
I am very happy to be alive,but I would like to get a more normal life. I have not been able to go back to work because of my eyesight problems and was turned down for SS Disability. If anyone could write me with any info that would help me cope better I would appreciate it.
Update: 13 Feb 2004
Hi to everyone. So sorry that it has taken me this long to write back. Lots of stuff going on. My husband had thyroid surgery recently to get rid of any cancer cells and the pathology report came back great. No more treatment needed--good news.
As far as my eyesight and eye are concerned there have been few changes in the last 6 months. My right eyeball remains paralyzed to the up and down movement, but I did regain the left to right movement. The pupil remains fixed and dilated and that makes the outside sun and bright fluorescent lights hard to take. I still have double vision if I try to look up or down or completely to the left or right, but I can look straight ahead and see correctly even though the right eyelid droops and does block partial vision.
I had to have two new pairs of glasses made. One regular pair with trifocals on the left lens and regular vision on the right as the right won't look down anyway. Of course, I have to hold my hand over the right eye or close it in order to use the trifocal/bifocal parts,otherwise I see double due to the right eye looking straight ahead.The other pair is strictly for reading. Since I now need magnification (OLD) and the right eye only looks straight ahead- I use this pair to read anything and then I hold it out in front of me to read. The bad part is that you don't realize how many times you look down to read, cook and prep foods, eat, sew, pet the dog, cut your toenails, etc.
I did try the prism lens, but they could not find one strong enough as my eyes were too far apart for it to work. I also tried a special contact lens to try and block part of the glare for my pupil, but that didn't work either. I did go to Iowa City to see specialists in neuroopthamology that my neuroopthamologist referred me to after about 7 months post op and they also said the prism would not work for me, try the contact lens and they also said that they would not recommend for me to have surgery on my eyeball itself to try to gain more movement because it might get stuck looking up or sideways. At least now I can see straight ahead.
They also said not to have eyelid surgery because of getting dry eye due to the fact that my eyelid does not react properly. It only opens up about half way and then as I shut my eye, the eyelid actually only closes part way. I had complete 3rd nerve palsy due to the annie and then it took them too long to diagnose and treat it and that caused a lot of problems. After the surgery when they gave me a 6-12 month recovery period time the nerve did regenerate,but it did it wrong with parts going to the eyelid that should have gone to the eyeball instead, etc.
I guess I am happy to just be here for myself and my family most of the time, but I do get upset sometimes thinking what if.......... I do have problems with depression and take meds, I am waiting for my Social Security review with the law judge in the court, I have been unable to do a lot of things that I used to do, but I am also blessed to still be here and the headaches that were almost constant from the time this anuerysm raised its ugly head to post op have gotten much less frequent and less intense in the last few months(hopefully never to return).
I have found out who your real friends are, have been the recipient of many prayer chains at the time of surgery and immediately post op, have been blessed with family, and returned to my faith with more belief. God Bless you all and I hope this has helped you somewhat. Please write me anytime.
I am hooked on this site like so many others as this is the only place I can share some of the feelings that I have--even if I only say it to myself that I understand how someone else is feeling because that is how I felt or feel too. I really need you guys and knew I had waited way to long to update and share. I am feeling so good this afternoon and even if I know that it won't last forever I wanted to let all know what was happening. Blessings, Jan
Update: 20 November 2005
I have not written an update since my anuerysm was undiagnosed for a month and then was finally diagnosed and I had surgery to have it clipped 3 years ago this weekend. I have come to this site so many times for encouragement and to read about others who have been through what I have. I know that I should have written to more of you than I probably did or maybe should have struck up an online friendship with some that I have written to, but I didn't feel as though I could say more than the great core group of survivors who are so wonderful that make this site so special. They are truly angels and they show their empathy and intelligence regarding so many different subjects to so many. Like so many others, this site has meant so much to me and I would just like to say thank you.
So much has happened to me in the last 3 years. I finally started to feel better in the spring of this year (2½ years post op). The headaches that I always had in various degrees of pain have finally started to subside and I take over the counter pain meds the majority of the time when I do need something. I do still have prescription pain meds on hand but seldom take them. The changes in our midwest weather still cause headaches for me -- too hot, too cold, too humid, impending storms, etc. My eye ball is still paralysed going up and down and I still have double vision constantly. I did get some of my left to right movement back in the eyeball. The eyelid is still drooping, but I have opted not to have surgery yet since they do not know if it will be successful. The pupil is still quite large and does not react to light, so light and glare and sunshine are the enemy. My balance has been affected by the vision problem also.
I am still married. I have 3 children in college - 2 getting their masters and 1 getting his bachelors. All to be graduated by next May and their father and I are hoping that they will have jobs by next fall. My husband was going to retire but is still working at the present time and will retire soon, probably next May, too. I have not worked since the day that I first started to get double vision and severe headaches.
This summer I did receive Social Security Disability. I did hire an attorney although I know not all of you have taken that step. The judge I had never asked the attorney but 2 - 3 preliminary questions and then said he was not going to sit and ask me questions for an hour and then see if their were jobs out there that I could do, but instead asked the vocational representative if their were any jobs out there for a person with my restrictions and she looked and said that there were none. The judge said that he found in my favor. The entire procedure only took 10 minutes or less. I was very nervous and my husband was not allowed in with me, so I was glad to have the attorney next to me.
I am so thankful for what I do still have and even if they do not think I will ever get any more back, I have learned that I must take my life less seriously at times and be glad to have what I do have and try to make the bad times smaller in order to live.
God bless you all this Thankgiving week and I hope that you all can find just 1 tiny thing to be grateful for.
Update: 1 February 2006
I was given an order this past Thanksgiving to check for any new anuerysms. I put it off over the holidays. I wanted to share with the group a new procedure for our community, a CT angiogram.
This new machine makes a 3-D picture of whatever body part they are looking at to realistically look exactly like it looks inside of you and they can even turn the image they have made to look at it from different angles.
The hospital refused to do an intial MRI/MRA due to the fact that I have 2 brain clips, even though the doctors office said it was ok since they were made of titanium. So then they ordered the CT with this brand new machine. It took less than 10 minutes and all I had to do was lie there and have an IV to infuse the dye and left to go home within minutes after it was finished--no pressure dressings and sand bags at an angio site. Yeah!!!
OF course, the best part is that they discovered no new anuerysms. The neurosurgeon likes to look at all tests himself so the films have been sent to his office, but I am thinking this is only a formality and that all will be fine.
Blessings to all.
Update: 17 February 2006
First thank you to all who wrote and sent good wishes to me regarding my last aneurysm testing. I heard from the physician's office this week and he did not find anything of interest on my CT either. So that makes me very happy. Several wanted to know the exact type of machine that was used. It was a GE LightSpeed VCT(3D) and I live in Illinois.
Discussion, comments, or questions: Jan Kosko
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