Today's doctor visit was very stressful. I am in danger of losing my vision. I was very frightened.The macula is pulling the retina from the back of my eye. The last time I saw the retina doctor, he gave me an Amsler grid to test my eye EVERYDAY. Think graph paper. I cover my right eye and see if all the lines are straight. Well, no, not straight. There were bulges in the grid. So, terrified of losing sight in my eye, I dreaded this visit. Well, what I dreaded was the operation to save my eyesight.
He took pictures of the backs of my eyes and said nothing has changed with the macula of my left eye. And, that I did exactly as I should have done by coming in to see him. The people at the Callahan Eye Hospital were very nice today. My visit to the ER was not pleasant at all.
Of course, every time I go to a doctor about eyes, they must do all sorts of procedures. Tommy was sitting closer to the screen than I. I could read everything down to 20. He said he could not read the last couple of lines. He was amazed I could read all the smaller letters/lines. I was so upset that I had him go in with me to the visit.
Callahan has an all-night ER for eyes. I have gone there twice after midnight, once at 3 am. I was seeing flashes in my eyes. It is a bizarre thing to happen, but not waiting until morning is imperative if you want to save your vision. I felt silly at first and called before a 6o mile trip in the middle of the night. They pressed me to come if I were seeing flashes.
I asked the doctor, "You mean you can operate on the inside of my eye and everything not run out and make me blind?" He or the nurse explained that he would poke three holes in my eyes and drain my eye and put saline in the eyeball and it would stay there instead of the eye liquid. Hmmm.
We had to go up to the seventh floor to get into his office with someone getting me in a wheelchair. Well, no, obviously not. When we got to the 7th floor, I called as directed and we were supposed to be on second floor. Actually, we were told we could go to one of four floors to gain access in a wheelchair. So, back down to the second floor.
The wheelchair was so tiny! I am quite sure I will have bruises where I forced my hips into it. And, I probably will have bruised on thighs, too. The only I could get out was to grab a doorknob or railing and pull while the person pushing me pulled back on the wheelchair!
When we entered the parking deck, Tommy took a ticket. Upstairs, he asked about the cost. Well, they would scan the ticket. If the ticket was not scanned, the price was $20 for parking. He left it in the car. Sooo, he went back down and brought it up to be scanned. It only cost $3 for parking.
So, I am in no danger of going blind right away. I just need to check every day! But, since I can type pretty well by touch, that is the only way I am getting to type since I can barely see due to having my eyes dilated!
Have you ever had problems with your macula? I have for over 20 years, but there is nothing to do but watch and wait until it gets dangerous. Well, mine is dangerous, but not dangerous enough to have risky surgery--his take on operating.
Macula or vision problems? What kind?
After the first comment there is a ways down to scroll to get my reply and possibly more comments.
I still have my macular hole that needs surgery. I searched for a surgeon who would allow me to not have face down positioning after the surgery. Did not find any here in St. Louis area. The first surgeon I found was excellent and I had a date set for the surgery. 1 1/2 weeks before my scheduled his office called and said that other than lifesaving surgeries, procedures were being postponed until things got better with the Covid. That was right when Covid had really just started getting bad, back in 2020. I went to reschedule that surgery with that doctor but after they examined me I was told he had retired from doing surgeries, but they highly recomended that I go to a cataract surgeon and have a rather large cataract that I had developed removed. I did that. It was not a big deal for me, and that surgeon was very kind and did good work.
ReplyDeleteSo then I started looking for a different retinal surgeon for my macular hole surgery. The first Surgeon I had all of the testing again for seemed kind of cold, and not very caring. I wasn't getting a kindness vibe from her. She did say I could just spend most of my time looking down at the floor, and could sleep on my side in my bed, and have 1 week of face down positioning with a gas pumped into my eyeball, after they had peeled a layer off of the inside of the eyeball, they fill it with a certain kind of gas, and that gas holds a pressure on the hole that is healing to help it close. The pressure is not on the macular hole unless the head is facing downward.
I saw another retinal surgeon and even though he had more experience than the female sugeon, I could not feel one iota of kindness from him and he seemed kind of haughty to me, even though he had good reviews. He didn't want to take much time explaining anything about the face down positioning, just the barest of information like he was impatient with me for asking, and that is a major issue for me due to degenerative disc disease in my neck and bacK where it connects to my neck.
I have a real worry that I will start having too much pain in my neck, shoulders and arms to stay in face down position for 7 days. Since the female doctor gave me a feeling of having a tiny bit more kindness in her, I have chosen her to do my surgery.
Before the eye surgery, I need to have a couple of small cavities (and anything else the dentist finds) taken care of, and some rearrangement done in my home for my face down positioning.
Will you have to do face down positioning after your surgery?
susie,
DeleteI commented to someone about the face down position and was told that they do it a new way. That news was a relief. Now, I am worried again. I cannot sleep face down. I am not even sure I can walk looking down. Now, tomorrow, I will call and ask about that. My doctor is so kind, thankfully. Thanks for that information.
People who have silicon put temporarily into their eye don't have the face down positioning. The surgeon thinks that I will do better with gas in my eyeball. The Mayo clinic does no face down recovery after macular hole surgery, but I can't afford to travel there and back.
DeleteSt Louis has Barnes Jewish hospital here and it is huge and has a world wide reputation as an excellent teaching hospital for all kinds of medical problems. I am astounded that there are no retinal macular surgeons that I can find in the St. Louis area that don't do the face down recovery with gas filling.
Take care.
susie,
DeleteThanks. Now, I have hope for no face down recovery. He said he was putting saline solution in my eye. Now, I wonder. The doctor is calling me tomorrow, so now I have even more questions--gas, silicone, or saline. And more!
Wow, I bet that was a relief to hear that you are not going to lose your sight! While I'm sure these operations are fine, just the thought of having something put into your eye would be very stressful!
ReplyDeleteTreaders,
DeleteAt this point, there is no immediate danger. It still hangs over me. I was working up to the realization I would have to be operated on during a rise in covid cases here in this city, all over. I still have to keep testing myself with the grid. Poking around in my eye was horrendous to think about!
I have something called Map Dot Fingerprint Dystrophy. Yeah, real original who ever named it. The cornea lifts up from the edges and if they look at your eye under their exam thing it looks like a topical map, a finger print or just dots. Guess that explains the name. lol. It happens about 2 times a year and if I start using a special eye ointment at bed time and lubricating drops during the day it usually only lasts a few weeks. This last one was about 2 months. It is painful as the cornea sticks to the eye at night without the ointment and it hurts to try and open your eye. Also lets in light from the side so I am much more sensitive to light and my eye will be very fuzzy. It isn't bad enough to fix it yet. So at the first sign of it coming back I start the ointment and eye drops.
ReplyDeleteTake care.
Crystal,
DeleteI have never heard that name, the way it happens, or the description. So, I definitely learned something from you. It sounds scary and painful. How do they fix it?
SO glad you caught this. How awful.
ReplyDeleteKim,
DeleteI am glad I caught it, too. and it is awful since it can lead to blindness.
I have had an Amsler grid on my refrigerator since March 2017 when I was diagnosed with age-related macular degeneration by a retina specialist. It still looks wavy and distorted but it is not getting any worse, which is great. I had a friend who was diagnosed with AMD about 30 years ago and was legally blind within 10 years. Now there are medicines which can stabilize or halt the progression of the condition. There were two medicines available four years ago and two more have been developed. One of them, Avastin, is relatively inexpensive, so they tried that first. The other three are very expensive and I have been given all four. The first three didn’t help me but the fourth one seems to have done the trick. The four medicines available, in the order I took them, are Avastin, Lucentis, Eylea, and Bevuo. They are all administered intra-vitreously (injected into the white of the eye). They do give you several “numbing drops” before they bring the syringe out. As the progression of the AMD has become stabilized, they have been able to make the injections less often. Originally it was every four weeks, then it stretched to every six weeks, and now it is every eight. My son takes me as my wife no longer drives and I cannot drive home on those days. The shots, which I get in both eyes, are not pleasant but I am just grateful that my vision is being prolonged.
ReplyDeleteIt is very expensive. Medicare pays 80% but I am still responsible for about $400 per eye per month (less often now). Fortunately the retina specialist put me in touch with a foundation out of Texas that so far has covered the rest of the costs. Approval must be renewed annually.
rhymes,
DeleteIt is good to hear the problem can be halted or slowed! I have heard of the shot in the eye and I would hate that. I cannot take avastatin. Thanks for the info.
I misspelled my current medicine, the one that is actually working. It is Beovu, not Bevuo.
ReplyDeleteThanks.
DeleteMy sister had a detached retina. She had the eye surgery that DID require the face down positioning. She rented a contraption that you straddled to keep you in the down position. She also used a contraption at the foot of the bed to place her head into to keep her in the face down position. I went to live with her as she healed. She was face down for close to 3 weeks. It is imperative that the patient remains totally face down. I know 2 people who were not faithful in keeping their face down and they both lost vision. I have had flashes and see a retina specialist. I will do anything to avoid having retina issues.
ReplyDeleteJanet,
ReplyDeleteI looked at those contraptions. Face down will not work well with gerd or spine issues. But, I, too, do not want to lose my vision! I suppose I would have to prepare lots of food so Tommy could get it out to microwave.