Author Topic: With a little help from my friends  (Read 151 times)

Offline dflee

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With a little help from my friends
« on: August 10, 2018, 06:23:10 AM »
This is kinda tough to put into words but could use a little insight.
My wife, Shirley, has had an on going situation with her eye sight for a good many years (she got cataract at 20) but it's been the last 11 years that have been really bad. Her sight became blurred with vision down to 20/2000 in the right and worse in the left.
After eight operations with three specialists there has been only a temporary improvement if any.
Reason for this is I would like to figure out a way to get her to Mayo or some other clinic to see what can be done. How do I go about getting in touch with the right people who can set this stuff up. Presently her specialists are from Wake Forest Hospital.
I have exhausted finances and am borrowed to the hilt but have all associated with her sight paid and am trying to put monies together to send her and her cousin (who will help her) to a clinic for another set of specialists and see what they have to say.
The severity and longevity has taken it's toll on her overall health and I fear it may worsen.
Any point in the right direction would be appreciated.

Don

Offline Nick B

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Re: With a little help from my friends
« Reply #1 on: August 10, 2018, 07:07:31 AM »
This is kinda tough to put into words but could use a little insight.
My wife, Shirley, has had an on going situation with her eye sight for a good many years (she got cataract at 20) but it's been the last 11 years that have been really bad. Her sight became blurred with vision down to 20/2000 in the right and worse in the left.
After eight operations with three specialists there has been only a temporary improvement if any.
Reason for this is I would like to figure out a way to get her to Mayo or some other clinic to see what can be done. How do I go about getting in touch with the right people who can set this stuff up. Presently her specialists are from Wake Forest Hospital.
I have exhausted finances and am borrowed to the hilt but have all associated with her sight paid and am trying to put monies together to send her and her cousin (who will help her) to a clinic for another set of specialists and see what they have to say.
The severity and longevity has taken it's toll on her overall health and I fear it may worsen.
Any point in the right direction would be appreciated.

Don

Don,
Can you be more specific than that? Cataracts can be removed surgically and if there are any remaining cells and a haze develops, each eye can be easily zapped with a laser to remove the haze. Do you know what operations were performed?  I go to two excellent Ophthamologists and if you give me more information and a diagnosis, I can discuss it with each of them. If you wish, you can also use my email address
Nick
PS   how old is your wife?
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Offline dflee

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Re: With a little help from my friends
« Reply #2 on: August 10, 2018, 10:05:13 AM »
Hey Nick:
Shirley started off being treated for Macular Degeneration. They aren't really sure what caused the condition. (I only mentioned the cataract as the beginning of her problems. She had that removed when she got it 40+ yrs ago.) In the last eleven years (when the blurred vision began) she has had three retina operations, both corneas replaced and three glaucoma operations. Due to pressure (we think) the left cornea has gone bad again. She has a number of mitigating circumstances (eye pressure, the lenses they put in her eyes yrs after her cataract and others). During the peak year (about five years ago) there were 53 specialist appointments in one year. Wake Forest University Hospital is supposed to be pretty good and we have met people from quite a distance away that come to these eye doctors. I'm not saying they are bad doctors but would like to have a different group take a look at her.
Not sure it would help but it would't hurt.

Don

Offline P.I.

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Re: With a little help from my friends
« Reply #3 on: August 10, 2018, 10:27:23 AM »
Don, sorry to see this.  I know what she has been going through over he last few years since we became friends.  I wish you were here we have some great eye specialists here and an acquaintance is the best glaucoma guy in the region.  Our prayer go out for you both.

Dim
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Offline Folsom

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Re: With a little help from my friends
« Reply #4 on: August 10, 2018, 11:12:30 AM »
Get her on Methyl B12, RIGHT AWAY. It stops Glaucoma progression in over 80% of people.

It HAS to be the Methyl version, regular B12 does nothing for people with eye issues.

I would recommend more possible diet changes if I knew her blood type and age. And is she overweight?

Offline Nick B

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Re: With a little help from my friends
« Reply #5 on: August 10, 2018, 02:07:50 PM »
Hey Nick:
Shirley started off being treated for Macular Degeneration. They aren't really sure what caused the condition. (I only mentioned the cataract as the beginning of her problems. She had that removed when she got it 40+ yrs ago.) In the last eleven years (when the blurred vision began) she has had three retina operations, both corneas replaced and three glaucoma operations. Due to pressure (we think) the left cornea has gone bad again. She has a number of mitigating circumstances (eye pressure, the lenses they put in her eyes yrs after her cataract and others). During the peak year (about five years ago) there were 53 specialist appointments in one year. Wake Forest University Hospital is supposed to be pretty good and we have met people from quite a distance away that come to these eye doctors. I'm not saying they are bad doctors but would like to have a different group take a look at her.
Not sure it would help but it would't hurt.

Don

Don,
This is really complicated. There are two types of macular degeneration, wet and dry. My wifeís aunt has one type..not sure which...and regularly gets injections in each eye to control it. Then you are mentioning corneas and has she had a few corneal transplants and maybe rejections of those? Then there is glaucoma and if not treated properly, will cause irreversible optic nerve damage. There are glaucoma surgeries like a canaloplasty which can bring the pressure down to 14 or so and the more aggressive Trabeculectomy which cuts an opening into the white part of the eye and allows fluid to escape and collect under the clear membrane and be absorbed by the body. That surgery can bring the eye pressure in the 8-10 range which is good. Over time, that procedure can be redone ....maybe every 3-5 years...and prescription drops can also control the pressure in between surgeries.
An experienced Ophthamologist will have a success rate of 80% or more without complications doing the trabeculectomy.
If you can add even more details, it would be helpful. Your wife is not on Medicare yet or she also isnít covered under Obamacare?
Nick
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Offline dflee

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Re: With a little help from my friends
« Reply #6 on: August 10, 2018, 03:50:03 PM »
Macular Degeneration is not Macular Edema.
The retina operations were for the back of the eye to help it reform
so she could see. The cornea transplants were then tried with the glaucoma
done in between. She's been on and still takes a number of Immunol-suppressant drugs so she's always tired and rarely goes out.
Some of which she had to quite taking cause she was on them for so long (Methotrexate was the worst) they started causing
problems of their own.
I really do appreciate everyone's ideas and suggestions. I guess I'm grasping at straws at this point but I refuse to give in if for no other reason than to keep my wife from going bonkers. This whole ordeal is becoming quite stressful.

Don

Offline Nick B

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Re: With a little help from my friends
« Reply #7 on: August 10, 2018, 11:41:18 PM »
Macular Degeneration is not Macular Edema.
The retina operations were for the back of the eye to help it reform
so she could see. The cornea transplants were then tried with the glaucoma
done in between. She's been on and still takes a number of Immunol-suppressant drugs so she's always tired and rarely goes out.
Some of which she had to quite taking cause she was on them for so long (Methotrexate was the worst) they started causing
problems of their own.
I really do appreciate everyone's ideas and suggestions. I guess I'm grasping at straws at this point but I refuse to give in if for no other reason than to keep my wife from going bonkers. This whole ordeal is becoming quite stressful.

Don

Don,
Yes, if youíre now speaking of macular edema, sure it is different. Two contributing factors in macular edema are diabetes and high blood pressure. I sure hope youíre wife has neither. The edema can be treated with lasers, drops, injections. It appears there are so many complicating factors to your wifeís situation. You could request the records and have a record review done by another physician(s).
I have no idea as to the competence or reputation of the Wake Forest doctors. I was treated improperly by three consecutive Ophthamologists after I moved from California and after a lot of research was fortunate to find a specialist with the UCLA Doheny Eye Institute. So my twice yearly trips just for those appts are well worth the effort.
My best to your wife.
Nick
ICEpower 1200as2 stereo amp
Audio Hungary APR 204 preamp
KEF LS 50 speakers
Border Patrol SE dac
Auralic Aries Mini
Roon & Tidal
Don Sachs phono
Basis Ovation turntable
Graham 1.5 T tonearm
AT-ML150 cartridge
PI Audio Uber
All cables by Gary A