[strike]

I’m new here and don’t have Diabetes, but my wife does. She was diagnosed in her early teens and is now in her early 30’s. I won’t go details of how well or poorly she’s controlled it, I’ll just give you a little insight as to what she’s been going through for the last few months.

I am posting this in the hopes that it will shed some light on the complications of retinopathy, macular edema and the process involved with “laser therapy”. In other words, don’t let this happen to you!


It was a beautiful summer night (June 24th 2005) as we sat on our deck scanning the sky for satellites; which was a favorite pastime of ours for years. Just after dusk my wife started complaining of black floaters in her right eye and within 20 minutes, the vision in her right eye was a mix of cloudy red and dark squiggles. I jumped online to try and diagnose what she had, while she called our Clinic’s 24 hour help line. It looked like she had some level of Retinopathy, just how bad was yet to be determined. With visions of retinal detachments in our head, we jumped in the car and headed to the emergency room.

As we sat waiting for the Ophthalmologist on call to show up I tried comforting her as best I could, but how do you comfort someone who could be in the process of going blind? Dr. 1 shows up in his scrubs, clearly woken up in the middle of the night, but with a great demeanor for someone in his position. He examined my wife’s eyes and came to the conclusion that both eyes were in the midst of proliferative retinopathy and slight macular edema (retinal swelling). He instructed her to sleep upright and then come in the next day for a closer examination. The next day came and her eye was still a bit cloudy but considerably clearer, which meant she was lucky...it was only a small hemorrhage. After the examination, Dr 1 scheduled another appointment in two days and instructed her to continue sleeping upright.

Appointment #2 and the right eye was fairly clear at this point. Dr 1 realizes that her eyes are a bit worse than they looked at first, so he suggests focal laser treatment as well as “scatter laser”. The focal laser takes care of the small hemorrhages near the center of the eye (towards the macula) while the scatter laser eats away at the oxygen starved portion of the retina around the outside. Unfortunately the scatter laser pretty much destroys a person’s peripheral vision, albeit a small portion at time.

Dr 1 suggests having Dr 2 perform the lasering, and so it begins. After a fluorescein angiogram, Dr 2 checks out the photos and then proceeds to put some focal laser into her right eye. She said it was fairly painless, but, the bright lights were uncomfortable because of the dilation. Dr 2 then hit her with the scatter (peripheral) laser, and according to my wife, he got about half way around before she couldn’t take the pain anymore. They stopped halfway through the peripheral laser of the right eye. The plan was to come back in a week (next Thursday) and put more laser in the right eye again; more focal and finish up the scatter/peripheral. During the week, she noticed that the vision in her right eye was blurrier than normal. Dr 2, said that this was a result of the macular edema (retinal swelling) and a normal occurrence with proliferative retinopathy.

When Wednesday rolled around, Dr 2 called my wife at work and said “your appointment is for tomorrow but we could get you in right now to finish up that right eye”. My wife was swamped at work and she would have had to line up a ride (dilation required) so she declined, knowing that she’d be going in the next day. An hour after that phone call, her right eye hemorrhaged again; only this wasn’t a small bleeder, it eventually took over a month for this one to clear up.

On Thursday, Dr 2 couldn’t see through the blood to get laser in to the right eye, so he then started working on my wife’s left eye with the same procedure; focal laser as well as the scatter/peripheral. Again, she left the laser room crying and in some serious pain from the peripheral laser. Dr 3 (a big wig) sat in on this session, instructing Dr 2 on what to do. Her next appointment was on Thursday of the next week.

Thursday rolled around and she got another dose of focal/peripheral in the left eye. At this point the left eye was finished and the next appointment, in two weeks, would be dependent on the right eye’s hemorrhage clearing up. Dr 3 sat in on this session as well. After this appointment, the retina in her left eye started to swell and everything got quite blurry, but with BS and BP control, we hoped the swelling would subside.

A week and a half later, later my wife’s left eye (the one that was finished) started hemorrhaging. She went in and there was too much new blood in the way to work on the left eye, so they checked out the right eye. The right eye was considerably clearer, so they put as much laser as they could in the right eye, focal only and instructed her to come back in one week. Dr 3 was there observing and giving Dr 2 specific instructions on what and where to laser.

The next appointment rolled around and Dr2 (with Dr 3’s instruction) put more laser into the right eye...focal as well as peripheral. Four days after that appointment, her right eye went completely blurry...worse than it ever had been. Fearing a retinal detachment, she called to see if she could get in right away. Dr 2 was on vacation until late October and Dr 3 was completely booked until Wednesday (10/5) of the next week.

So we went in yesterday and Dr 3 said that the right eye simply has macular edema, no cause for alarm, but he was concerned about her blood pressure which is at 120/88. The lower her BP, the less chance of hemorrhages AND her macular edema will decrease. So, armed with the goal to get her BP as low as possible, we left and she’ll be going back in a month. By that appointment it will be her 5th month of this. If her right eye hasn't cleared up by then, she'll probably just bite the bullet and opt for a vitrectomy.


So, that’s her eye story, from the beginning to now....sorry if it’s wordy and hard to follow in places; so much has happened over the last few months that things tend to blend together. While her vision will never be the same again, we're just glad her retina(s) didn't detach. The Dr's say that it takes about 4 months to see the results of the laser therapy, decent vision for my wife would be a great X-Mas present .

[Cinnabon]

Hello...
If you read up on my story it is much like your wife's. I am scheduled for a little more treatment just on the left eye, the eye that was in worst shape. I know EXACTLY how your wife felt. It is EXTREMELY uncomfortable and it is painful. One thing I did notice that your wife never recieved was a KENELOG shot. This helped me out greatly, expecially with the macular edema. My right eye's process, that was the 1st thing they did and the improvement was incredible and the hemmorages did stop. I think you will have that Xmas gift you so much want.

[am1977]

Wow, sounds like a rough experience! I'm sorry that your wife and yourself had to go through all that, but I'm glad you decided to share your story with us. It could help some of us who are struggling with managing our diabetes work a little harder to get control. The rough thing about this disease is it's very easy to live in denial, b/c complications usually aren't seen til down the line. THe unfortunate thing is by the time there are complications, it's too late. The damage can't be reversed.

I give you and your wife a lot of credit...this kind of experience can be very hard, but you are both giving your all to get through it. Your wife is very lucky to have you supporting her, I can tell you care very much about her. I'm sure with your continued support, she will get through this.

Again, thanks for reminding us how important taking care of our health is and please feel free to drop in anytime. We're all interested in hearing how she is doing.

Keep fighting!

[strike]

A crazy update...my wife drove to work yesterday! According to her latest vision test during the opthamology appointment on Wednesday she has 20/60 vision in her left/good eye and it’s getting better/clearer every day.

Because I was VERY skeptical that she could see that well, I gave her a makeshift vision test while we were in the car (I was driving at the time). I would say ”what does that street sign say?”, “what does that billboard say?”, “what kind of car is that?”. Since they doubled her dose of BP meds to a whole pill instead of a half, her vision in her left eye has cleared up considerably. They upped her BP dosage about two weeks ago, so hopefully things will continue to improve in that department.

The roads she drives to work on don’t exceed 35mph, but just out of curiosity (and fear of insurance issues), I looked up the MN vision requirements for driving and found the following:

Minnesota
Visual Acuity:
20/40 in the better eye, with/without corrective lenses.
20/70 in the better eye with restrictions on speed limit.
When visual acuity is 20/80 or up to, but not including 20/100, applicant referred to driver evaluation unit.
20/100 in the better eye: license denied.
Visual Field:
Horizontal field of vision 105 degrees.
Horizontal field of vision of less than 105 degrees: possible with restrictions.

While her horizontal field of vision is less than 180, it is much wider than the required 105 degrees, so luckily that’s not a problem. Now we're hoping that the right eye starts clearing up soon.


Cinnabon - Your threads are what prompted me to start this particular thread, in the hopes that others will realize just how important BS and BP control are to Diabetics. In regards to the KENELOG shot, we’ll have to ask the Dr. about this...it makes me curious as to why they didn’t give this to us as an option/treatment?


am1977 – Thanks for the kind words. I’m just glad there are forums like this, where people can come to ask questions and receive knowledgeable and straight forward answers.

[Cinnabon]

Thank you for that early smile!!!
I am VERY happy for bothe of you and her improvement sounds tremendous!!!

Keep us updated!!

Bog hugs to both of you!

[strike]

An update...

Well, it appears as if the edema (swelling) in her right is has gone down quite a bit over the last week or so and things aren't nearly as blurry...so, of course, that's good news.

She has another appointment at the end of the month, so we'll just keep our fingers crossed that nothing happens before then. Pending any new bleeding, they'll want to do more lasering during that appointment, so she has that to look forward to LOL.

[Cinnabon]

THat sounds GREAT!

I feel for her on the upcoming Lasers , I'm headed for that in a few weeks. Tomorrow I will get a Kenalog in the Left eye which will help w/ the swelling. I wish you both luck and it sounds like things are turning our GREAT!!!

[KickStart101]

Originally Posted by strike

An update...
Well, it appears as if the edema (swelling) in her right is has gone down quite a bit over the last week or so and things aren't nearly as blurry...so, of course, that's good news.
She has another appointment at the end of the month, so we'll just keep our fingers crossed that nothing happens before then. Pending any new bleeding, they'll want to do more lasering during that appointment, so she has that to look forward to LOL.

Well, that is Welcome news. Good to hear. We will Definitely keep our
fingers crossed for her and a couple prayers for good results won't hurt
any either. Wishing the best for her and you also.

[strike]

It's been a while since I last posted, so here's a short update.

She finally got a complete check up two weeks ago, multiple fasting blood tests, 24-hr urine test, 24-hr blood pressure test, sonograms on multiple organs (heart, kidneys etc) and other tests that I can't recall at this moment. It turns out that she has an underactive thyroid, should not be eating foods high in phosporous or potassium, needs to control her blood pressure better (different meds) and who knows what else. Needless to say, she's starting to feel much better with her new meds.

Now on to the eyes...

LEFT EYE:
Her left eye had been getting better, fewer vessels bursting and on top of that, she had a Kenalog shot in her left eye which reduced the retinal swelling greatly! Her vision was up to 20/40 in her left eye, but, unfortunately she had a small vessel burst a month ago. Luckily it's been slowly clearing up and has she has since received additional laser since the burst.

RIGHT EYE:
This was the original "bad eye" and has been the major problem from the middle of Summer up until present. Since early November, it seems like vessels have been constantly bursting and her eye hasn't cleared up at all.

That being said, she goes in for a vitrectomy on her right eye tomorrow (Wednesday). They plan on doing the vitrectomy, lasering and giving her a Kenalog shot in the retina, all while she's under general anesthesia.

Her retina isn't detached, so hopefully it will stay intact through the surgery. If not, they'll have to add a retinal attachment to the list above LOL.

I'll try to keep you posted on how things go.

[am1977]

Hope the procedure goes well and is over before she knows it. Do keep us posted with how things go.

All the best

[Cinnabon]

Strike thanks for the update. I also am having the problem in my right eye again, I just had another Kenalog last Friday and soon to come, the Lasers. Keep us updated and we wish you both the best!! (Big hugs to u both!)

[KickStart101]

Hey Strike: Wow, you and your Wife have surely been going through
a scary and frustrating time. As you say at least the retina didn't detach.
We do hope and pray that the Doctors are successful in in your Wife's
procedure tomorrow. Geez, they can afford to put people on the moon
but they can't afford to find ways that are less barbaric(sp) in treating
people during procedures and operations.
Yes, I have underactive thyroid also but I have low potassium. Many
people on here have Hyper or Hypothyroidism.
Please come back with Good News.

[strike]

She had the surgery on Wednesday and everything went well, especially, no detached retina. We went in to see the Dr. on Thursday morning (the day after), she said that everything looked great. She prescribed a few different drops and an ointment to be put directly on the eye a few times per day. Aside from some intense stinging, which is apparently a result of the sutures), the pain doesn’t seem too bad.

Her right eye (the one they “vitrectomized”) is at 20/150, much better than not being able to see any light at all. It’s my understanding that they put a lot of laser into her right eye while she was under, so her retina has been pretty traumatized. Combine that with the fact that there’s a big glob of steroids sliding down the back of her eye and 20/150 sounds pretty darn good LOL. Now comes the real test; trying to keep her BS and BP on an even keel.

The thing she’s having the hardest time with right now is the after effects of the anesthesia. More than twenty-four hours later and she’s still really groggy/lethargic, having a hard time walking normally. I’m hoping that tomorrow she’ll start coming out of that, I plan on getting her out walking as soon as she can.

Hmm, what else.

The surgery took a total of 1.5 hours. She believes that they had to give her ether because she wasn’t responding to the normal anesthesia. That would probably explain why she’s having a hard time with it now. I don’t think I could have surgery like that with only a local. People sticking things into my eyeball, me having to hold my eye still for 1.5 hours? Ugh, that’s not for me.

Her left eye is up to 20/40, so the steroids (injected into the side of her eye, not directly inside it) are apparently doing a great job.

She goes back in a week to have her right eye looked at. Hopefully I’ll have some more good news then.

[Cinnabon]

AWESOME NEWS!!!!
That is REALLY good to here Strike. I hope your wife gets back to feeling soon. You are one GREAT hubby!!!!

Thanks for sharing your wife's story! It really means a lot.

[strike]

Thanks Cinn, it helps knowing that people are reading my posts. I'm so glad I could make a little contribution to the forum.

I have a few reasons for posting my wife's story on here.

1. To show everyone just how important it is to keep your BS & BP under control. Type 1 isn't a joke, it can happen to you!

2. For those facing the long path that is diabetic retinopathy, I'm hoping to give them an idea of what to expect from the process. To try and provide a real life account of the process from start to...well...to the present. Cinn, you've done a fantastic job of this as well, hopefully more people who undergo the process will create threads.

3. As a non-diabetic, this is a way for me to get it all off my chest I guess. As a spouse, I know I have it easy compared to my wife, but things can get a bit tense around the house. Working nights, I sometimes have to stay up most of the day, driving my dilated wife around to her appointments, picking up the kid from school, catching sleep when I can. This is a nice way to unload everything I know about it and just leave it here.

Anyway, I'll report as I get more info.