bad news from the ophthalmologist today - looking for a little info...

cmcjr99

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my vision has been pretty bad for years - 20/300 to 20/400 in 2014 , then 20/800 last december - but the vision in my left eye took a drastic turn for the worse 3 months ago... finally got to go see an ophthalmologist today and my worst fears are a definite possibility...among the laundry list of problems he cited , i am dealing with wet macular degeneration (rupturing of blood vessels that affect the central field of vision) in my left eye , edema in both eyes due those rupturing blood vessels , retinopathy in both eyes , the onset of cataracts in both eyes ...officially there is no cure known for wet macular degeneration and it GENERALLY goes from diagnosis to blindness over roughly 10 years...in some severe cases the onset-to-blindness can be literally a matter of weeks...over the past 3 months i have had 4 or 5 significant increases in vision loss in the left eye from one day to the next...he referred to mine as severe in both eyes (though oddly in my right eye it was not affecting my center of vision , but the peripheral areas...

his recommended course of treatment is a series of injections in both eyes...when i asked if this treatment could cure or reverse the wmd or if it was merely to slow the progression , he said "yes"...despite this disease being classified as incurable , he said that some patients respond well and only need the injections for a sort period (6-24 months) while many will need them for the rest of their lives...the third group he cited were those for whom the treatment does not have an effect and that usually results in blindness...

i am already hypersensitive regarding my eyes...i have difficulty in opening them wide (as i was being chided by all the nurses today just reinforced) and many eye doctors have failed miserably at even getting drops into my eyes due to my massive involuntary blink reflex when anything is near them...one of my biggest fears has been the need for eye surgery or shots in or around the eyes and now im being told that is basically what my future holds unless i would prefer to be blind...

sooooo...the purpose of this post is to ask if anyone else is dealing with (or has dealt with) a similar issue and had to go through the monthly injections...if so , what was your experience ? did it help restore vision or merely slow the worsening ? or did it fail completely ? any side effects ? pain levels during or after the sessions ?

would greatly appreciate any info , especially success stories or reassurances which i could REALLY use n ow as i await word tomorrow on whether i get to keep my foot or have an amputation at the knee (yes , i'm serious...got my fingers crossed on that one but i have a bad feeling there too) ...
 

Rhubarb_Runner

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Oh man. I have a good friend fighting off failing eyesight too -- good luck with it!

My father has been getting monthly shots, and it really did help him. Sounds like you have several things going on at once, but in his case there was improvement.
 

anglinomics

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I'm sorry to hear about your condition and it's much worse than my experience. 3 years ago, I was diagnosed with macular degeneration. The kind that can't be fixed. At that time, I wasn't even seeing an ophthalmologist. I was just going to a Sears like operation. I immediately went to an ophthalmologist to get a second opinion, and I've been seeing him since then. He has not prescribed any shots or other options that might extend the use of my eyes. And I'm just on annual appointments now.

I also have very dry eyes. He did say to use some eye lubricant during the day, and eye gel at night. This has helped me a great deal. But I don't think it has anything to do with macular degeneration. I wish you the best. I can only begin to understand the fears that you have.
 

Camsue

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cmcjr99 my prayers my friend hope and pray the injections work. I lost total vision in my right eye years ago due to an incident at work. I was completly blind for a few days due to the blunt force trauma/injury scariest time of my life luckily my left eye recovered but the right never did. You will be in our prayers my friend
 

KCLJ520

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I echo the prayers of my fellow Benchies, Claude....my Grandfather had a similar form of macular degeneration that you do, and he also received the injections, starting when he was about 79 or 80, and he had them for the better part of probably 3 years. The shots did help, and he was without them for the rest of his life (he was almost 87 when he passed, of heart failure, unrelated to the eye issues). Overall, I felt like he responded well, and while they were not fun, he said they were really not bad. I took him to many appointments, as did my wife and her parents, and they are pretty quick and painless, regardless of how sensitive your eyes are. I do think they helped him, he was still driving up until a few weeks before he passed away, and reported being able to see well. I will certainly hope and pray the same is true in your case, God willing the shots will help, and I am sure after a few appointments, you will get used to them, I think they are a pretty non-invasive treatment (as much as possible).

Keep smiling, we will all keep praying!

Blessings,

Kevin
 

cmcjr99

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Oh man. I have a good friend fighting off failing eyesight too -- good luck with it!

My father has been getting monthly shots, and it really did help him. Sounds like you have several things going on at once, but in his case there was improvement.

hearing of even some improvement is a good thing to hear...will be sending up prayers for your friend and father too....

I'm sorry to hear about your condition and it's much worse than my experience. 3 years ago, I was diagnosed with macular degeneration. The kind that can't be fixed. At that time, I wasn't even seeing an ophthalmologist. I was just going to a Sears like operation. I immediately went to an ophthalmologist to get a second opinion, and I've been seeing him since then. He has not prescribed any shots or other options that might extend the use of my eyes. And I'm just on annual appointments now.

I also have very dry eyes. He did say to use some eye lubricant during the day, and eye gel at night. This has helped me a great deal. But I don't think it has anything to do with macular degeneration. I wish you the best. I can only begin to understand the fears that you have.

i have very seldom done the whole doctor thing throughout my life...i had an eye exam and got new glasses in 1997 then my next exam was when i went to one of the free health care days here in south carolina back in 2014....finally got health care coverage last summer after the amputation so was able to get an eye exam in december...at that time , the doc said there were no diabetic issues with my eyes so i was greatly relieved...fats forward just a few months and things have turned for the worse ...just goes to show that nothing is promised and never take anything for granted....

good luck with your eyes...i sincerely hope you can manage yours with what you're doing and never lose all your sight or have the need for injections ...

cmcjr99 my prayers my friend hope and pray the injections work. I lost total vision in my right eye years ago due to an incident at work. I was completly blind for a few days due to the blunt force trauma/injury scariest time of my life luckily my left eye recovered but the right never did. You will be in our prayers my friend

oh wow , i had no idea...i admit having sight in one eye is better than none , but just from my limited experience , i can say that it really is a tough adjustment due to depth perception and peripheral vision issues...my best friend in life only has one "real" eye ...i don't know what happened or when , but i know she had the glass eye already when i met her almost 30 years ago...do you have one of those or were you able to keep your own despite the vision loss ?

I echo the prayers of my fellow Benchies, Claude....my Grandfather had a similar form of macular degeneration that you do, and he also received the injections, starting when he was about 79 or 80, and he had them for the better part of probably 3 years. The shots did help, and he was without them for the rest of his life (he was almost 87 when he passed, of heart failure, unrelated to the eye issues). Overall, I felt like he responded well, and while they were not fun, he said they were really not bad. I took him to many appointments, as did my wife and her parents, and they are pretty quick and painless, regardless of how sensitive your eyes are. I do think they helped him, he was still driving up until a few weeks before he passed away, and reported being able to see well. I will certainly hope and pray the same is true in your case, God willing the shots will help, and I am sure after a few appointments, you will get used to them, I think they are a pretty non-invasive treatment (as much as possible).

Keep smiling, we will all keep praying!

Blessings,

Kevin

now THAT is encouraging...i'm still only 51 so thinking of a long life of shots has been a real fear...they did tell me the first treatment day will be about 2 ours because they have to run more tests to set baselines with which to compare results going forward...other than that , they have told me very ;little of how the procedures will work...


and on the foot issue ...doctor told me today he was cautiously optomistic...no obvious osteomyelitis though there is an area of edema within the bone marrow...he still wants to see me weekly but he is leaning toward me being ALMOST out of the woods on this one....i am skeptical though because over the past 16 months they've told me i was all healed up and released me 3 times only to have the wound spontaneously re-open and start draining fluids....
 

KCLJ520

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Good, I am glad to know that I could provide you with some encouragement....your age should work in yourfavor, both for your eyes and your foot of course. I will pray for healing across the board, and leave the rest to God!!

Blessings,

Kevin
 

SymphonicMetal

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My mother has a similar situation as yours and the shots did help stablize her vision for about 3 years. Unfortunately (without going into details) she went against her eye doctor's advice on 2 separate occasions. and now is pretty much blind. If she had stayed with the program she would probably be functionsl right now.

I don't know your driving situation but you'll definately need someone to drive you to and from the doctors for these shots. If you are still able to drive right now you won't be able to for a day or two after getting these shots.

As someone who has suffered from eye problems their entire life I certainly sympathize with you. My problems are completely different than yours since mine are Cornea related and I am guessing yours are Retina related. I actually cannot wear anything but hard contect lenses since glasses, soft contact lenses and anything else will not work and am quite nearsighted w/o the lenses. In the grand scheme of things, I guess if I have a serious eye problem, I'd rather have what I have than other problems.

Good luck in your new situation and I'm sure many members ofThe Bench will be sending you thoughtss and prayers for sure.
 

cmcjr99

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My mother has a similar situation as yours and the shots did help stablize her vision for about 3 years. Unfortunately (without going into details) she went against her eye doctor's advice on 2 separate occasions. and now is pretty much blind. If she had stayed with the program she would probably be functionsl right now.

I don't know your driving situation but you'll definately need someone to drive you to and from the doctors for these shots. If you are still able to drive right now you won't be able to for a day or two after getting these shots.

As someone who has suffered from eye problems their entire life I certainly sympathize with you. My problems are completely different than yours since mine are Cornea related and I am guessing yours are Retina related. I actually cannot wear anything but hard contect lenses since glasses, soft contact lenses and anything else will not work and am quite nearsighted w/o the lenses. In the grand scheme of things, I guess if I have a serious eye problem, I'd rather have what I have than other problems.

Good luck in your new situation and I'm sure many members of The Bench will be sending you thoughtss and prayers for sure.

the only thing they've really told me so far has been that i need to keep a very close eye (no pun intended) on my blood sugar and a1c numbers and to a lesser degree my blood pressure (luckily that has been great since last july other than when the infection flares up in the foot)...i'm not really big on salts and sugars in my diet , but with my extremely limited budget and inability to stand long enough to do the good old fashioned cooking ive enjoyed for most of my life i am currently consuming a little more of both via fast food meals and frozen dinners...

as for driving , i ost my car in november of 2018 and havent been behind the wheel since...right now 90% of my transportation is provided by the local county council on aging vans which provide low or no cost transportation for any medical trips plus grocery stores , dmv , dss , ssa , food banks , etc...last august when i had my colonoscopy the doctors would not let me go home afterwards because i had no one to sign me out after being under anesthesia so they admitted me to the hospital...because of that , i did ask the doc this week if i would be able to ride the vans home or would i face the same situation to which he replied that i could ride home because i would not be put to sleep for the procedures......
 

cmcjr99

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just got home from the first injection...

no real pain to report but i was told the eye would experience discomfort the rest of the day...they were not wrong...its uncomfortable and there are black spots floating throughout my field of vision...the attending nurse said that was normal and that it was the medicine..they said i could dab the eye but do not rub it ...naturally that i exactly what i instinctively feel the urge to do...

originally the doctor said i would be having the procedure doing monthly but after running the tests today theyve decided to go with a weekly regimen...i can only assume that means it has worsened and more immediate treatment is needed but at least now i have had round one and the fear of the unknown is no longer the issue....

i will try to provide updates as i learn more , but i am least hopeful of keeping my sight which is a definite need to continue in the hobby..
 

SymphonicMetal

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just got home from the first injection...

no real pain to report but i was told the eye would experience discomfort the rest of the day...they were not wrong...its uncomfortable and there are black spots floating throughout my field of vision...the attending nurse said that was normal and that it was the medicine..they said i could dab the eye but do not rub it ...naturally that i exactly what i instinctively feel the urge to do...

originally the doctor said i would be having the procedure doing monthly but after running the tests today theyve decided to go with a weekly regimen...i can only assume that means it has worsened and more immediate treatment is needed but at least now i have had round one and the fear of the unknown is no longer the issue....

i will try to provide updates as i learn more , but i am least hopeful of keeping my sight which is a definite need to continue in the hobby..

Sorry to hear about the weekly shots development. I'm certain the weekly shots will at least stabilize your vision. My mom was going every other week and her vision at least stayed the sme. She decided she did not want to get the shots as often (despite my telling her she still should go that frequently)and after a year, she can hardly see anymore.

I know sfter her shots her eyes always stung and were runny. Best thing to do is go to sleep if you can.

Keep us posted if you can. I know from second hand experience what you are going through and it is not fun.
 

cmcjr99

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update time - when i went back for last week's appointment i thought it was for the 2nd shot in the left eye , but the nurse informed me they must wait at least 3 weeks between shots in an eye so they were going to do the right one that day...that really worried me because the day of discomfort and spots in my vision from round one ended up being a lot worse than they suggested....in that eye , the pain set in monday night after the anesthetics wore off...for the next 7 days it felt like i had a beach full of sand trapped under my lid ...and the spots ? ...well it started as one pencil-diameter spot for several hours....that went away , but midway thriough the night a single smaller spot took its place...the following day that spot had become many spots...everywhere i looked it seemed as though there were a bunch of tiny bugs flying or crawling everywhere - similar to the way the ats run when you upset a fire ant mound...though not quite as bad now , those little spots are STILL floating around almost 2 full weeks later...when i talked to the nurse and asked her if that many days of pain were normal or unusual she said it really varied from person to person...i told her if the right eye would have the same response , i was afraid to have it treated right away since it was still considered my "good" eye ...she offered to let me reschedule but i just can't throwaway food....i can't go window shopping...i just don't believe in wasting a trip so told her we might as well do it and get it over with...as it turned out , im glad i did...very much unlike the left eye , the right eye only had a couple hours of very minor discomfort and i never did see any spots in it...

i guess the good news is that even after just one treatment in the left eye , the doc said i had noticeable improvement in my vision in that eye...so the plan going forward will be treat one eye one week , the other eye the following week....then back to the first 2 weeks later and so on...he said if we can get the swelling down then we can try to get some new glasses that actually will allow me to see for the first time in months...

on a side note - yesterday evening i got a call from the lawyer who is representing the bank that foreclosed on this house last year...as most of you know , i was allowed to stay here last year due to my health status and this year once covid shut everything down , but i had been nervously waiting for the lockout to come...while i HAVE found a new place , i still have not been able to complete my move and still have lots more to do...well , her update yesterday was to let me know the bank in oklahoma is extending my eviction ban until december 31 (i was never covered by most other moratoriums on eviction since mine was not for lack of rent payment)...i still plan to leave this house in 2 weeks since i dont have the money to pay for another month of power here , but at least now i know i can move to the new house and still come back here during the day to go through and move more stuff over the next few months...now i just need to find new homes for 2 cats by the 18th ...
 

SymphonicMetal

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Sorry to hear about the 7 days of pain and discomfort in your left eye. From what I have observed with my mother the pain and discomfort is usually gone within 24 hours. Glad to hear your right eye went better and you vision improved in your left.

I can't remember if those black spots are a symptom of macular degeneration or an after effect from the shots. I thought it was the former but am not sure if I'm correct on that.

Good luck on the move and finding a home for your cats. If I had to find a home for my 2 cats in a short time period, I'd be in a major panic. Hopefully, you can find a home or a no kill shelter for them.
 

cmcjr99

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Sorry to hear about the 7 days of pain and discomfort in your left eye. From what I have observed with my mother the pain and discomfort is usually gone within 24 hours. Glad to hear your right eye went better and you vision improved in your left.

I can't remember if those black spots are a symptom of macular degeneration or an after effect from the shots. I thought it was the former but am not sure if I'm correct on that.

Good luck on the move and finding a home for your cats. If I had to find a home for my 2 cats in a short time period, I'd be in a major panic. Hopefully, you can find a home or a no kill shelter for them.

the day of the first shot , the nurse assured me the black spots were normal and the doc added that it was just the medicine...now the GRAY spots that were already covering my central field of vision are definitely the symptom of the wmd...though the vision did improve in the left eye , its definitely still a problem...at first it was bad enough i simply could not even see directly in front of the eye...now i can at least do that , but most things - especially faces - appear distorted , almost like i'm looking at a picasso painting (or if you have ever seen magic cards , think of an old one called metamorphosis...

i've actually been looking to rehome some of the cats since LAST may...at one time mom , dad , and i combined had nearly 40...last may i was down to 21...since then 4 or 5 passed away....sadly nearly 10 simply disappeared , and later we learned they , like the last few of my dad's chickens , fell victim to a neighbor's vicious dog...i actually lost my 3 all-time favorite cats to that mutt...the only shelters here are not the no-kill variety...i tried a few others around the state but all had 3 to 6 month waiting lists and required a fee of $75 to 100 per cat which was not an option...now i am in communication with the current manager of the magoo room in north carolina...she is going to try to help get grants to have dad's 2 8 year old boys fixed and get their shots up to date so she can get them into a rescue in their network...if that fails , i have no clue what to do...my cats are my only family now and losing as many i as have has only magnified the issue with having to rehome the few still here...
 

SymphonicMetal

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I have a similar problem in recognizing faces. If you don't have some distinguishing physical characteristic, I'll walk right by you even if I know you quite well as I cannot see facial features too well unless I am right up on someone. My eye problem is my corneas whereas I'm pretty sure yours is retina related.

If I am understanding you corretly, you are being allowed to continue moving your stuff out of your presnet house while you are no longer living there? Is there a way to keep your two cats there to buy a little more time to find them a home? I'm not sure how often you'd be going back there but if it was every other day or so, the cats should be fine as long as they have plenty of food, water and litter to hold them for a few days. Just a long shot thought on lessening that probblem.
 

cmcjr99

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If I am understanding you corretly, you are being allowed to continue moving your stuff out of your presnet house while you are no longer living there? Is there a way to keep your two cats there to buy a little more time to find them a home? I'm not sure how often you'd be going back there but if it was every other day or so, the cats should be fine as long as they have plenty of food, water and litter to hold them for a few days. Just a long shot thought on lessening that probblem.

the place im still in was actually sold at a foreclosure auction may of 2019 and i got my first eviction notice june 18th...due to all my medical issues and being bedridden or wheelchair bound most of last year the bank that now owns the house gave me extensions ..that lasted until this march when they had planned to do the lockout march 15th....luckily for me , that was the day SC began the eviction ban...i actually just got a call friday from the lawyer telling me i now have until december 31st , which does help in some aspects ...the big issue now is that after a couple unexpected issues popped up this week , i am flat broke til october 1st and have no way to raise the money to cover the power bill in the old place (or even the new one for that matter)..the old one is still in my dad's name so i can not get extensions nor can i have the power turned back on if it gets cut off...furthermore , the power out in the country is significantly higher than at the downtown location (a cheap month in the country even with no AC runs a minimum of 140 and usually closer to 180 or 200 while the new place with the AC running 24-7 costs under 90 per month)...once the power gets cut off (either the 18th or 21st) there will be no water here since power is needed for the well...i will be still ale to make trips to get more of my stuff , but with no lights , for half the house (basement , attic , interior rooms with no windows , etc) it will be almost impossible to see enough to do anything

during my 3 hospital stays last year my cats suffered even more than me...the house has no heat , no air , limited running water , and 3 rooms whose floors caved in 2 years ago...add in the fact that since i lost my car i cant take off trash and since covid no one has helped to do that and i now have a place that has had literally less than 1 bags of trash hauled off since november 2018...for reference , i used to haul off 6 to 8 bags per WEEK...the house is now essentially waist deep with trash inside and outside and is infested with pests...literally millions...the bugs are in the appliances...they come out of the fridge , freezer , oven , microwave - you name it , they have overrun it...the damage done by the bugs are the reason i have had to burn over a million cards this year alone...a combination of the condition of the house , my lack of knowing more than 2-3 people in the area , and a general dislike of cats by the only nearby neighbors meant i had to have some drive 50+ miles a couple times to tend to the cats while i was in the hospital...and sadly he rummaged through the entire house , most of which was completely closed off to the cats then , and stole a ton of cards and memorabilia while i was away...there is literally no one i can trust to help out and as it stands i am lucky to get a ride one day a week aside from van rides to doctor visits...

now just to let it be known...i'm not coming here looking for sympathy or handouts...just doing a little venting while explaining the current situation...i know it could be worse because honestly i've known since my dad died i was in a pickle and yet somehow so far i've hung on and kept a roof over my head and food in my belly and the cats' too...the grwoing heatlh issues have made it tough , but i know it could be much worse - i am after all still on the right side of the dirt when many are not so lucky...

as soon as i finish the move though , my housing situation will improve exponentially , but there is still the matter of how to get the rest of my stuff moved when i have no transportation...i have 5 doctor appointments over the next 2 weeks so will be very limited , but i'm going t try to dig into those dark areas of the house and try t get some stuff ready to go...of course the problem with that is that anything i pack up and dont move almost immediately gets re-infested with the bugs and has to be unpacked and repacked...it's not a fun or pleasant situation i assure you...
 
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