Glaucoma and other problems

I was diagnosed with glaucoma at my last visit to the optomitrist, and he referred me to an opthamologist. I also have retinopathy, and cataracts started a few years ago.

I just had the OCT test done, along with the Visual Field Test, and another pressure test.
I have to see him later this week for the results of my tests, and treatment options. I’m praying that I’ll only need drops for now, and that they work without giving me side effects.

Diabetes sucks.

I went for regular eye check for retinas and MD told me he could not dilate b/c I had glaucoma. I freaked. Had the laser surgery the next day on both eyes and it was nothing! The fear is the worst part. So easy compared to retina lasers.

Try to relax and not fear.

I saw my opthamologist yesterday, (finally). I had more tests done the same day so I only saw him for a few minutes. He said we caught it early enough, there wasn’t much damage yet, and put me on brimonidine eye drops right away. I took them last night and noticed that my eyes looked like they’d been bleached, or like I’d used Visine to get the red out. The inside of my eyelids which is normally pink, was completely white. Weird.

This morning I woke up late with a really bad headache and could hardly see. It was like looking through steamed up glasses, or a heavy film of vaseline. Light caused pain, and I had several other side effects. I called the manufacturer to see if any of them were serious, and they said yes, stop taking them and call the doc immediately. Did that, he told me to stop too, and gave me some samples of Travatan. I’m not going to start it yet, I want to wait until Monday morning, when his office will be open again, just in case I have more problems with side effects. I also feel my system has been overwhelmed by these bad reactions. I want to wait a few days so its all out of my system before trying anything else.

It was very scary waking up and finding that I was essentially nearly blind. I only had about 10% of my vision. Its almost back to normal now, but the headache isn’t gone yet, and the light sensitivity is still there too.

I never expected to have such a severe reaction, but I’m not surprised. Its happened before with other meds.

I am not looking forward to trying the Travatan on Monday.

We had a bit of an emergency right after my appointment. The van lift for my powerchair (wheelchair) failed outside the doctor’s office. My daughter had to come over and help my husband sling a 450 pound wheelchair into the van manually while it hung suspended to one side of the van opening. Not easy. Then she followed us home and helped him get it back out so we could get it into the house.

My husband will have to spend an entire day to get it serviced, but first, the service guy has to “diagnose” the problem in person before the manufacturer will back up their warranty and send replacement parts. This means a further delay.

Meanwhile, I have several appointments and no way to bring my wheelchair. Its going to be a bad week.

I just hope the manufacturer replaces everything that’s malfunctioning. It IS still under warranty after all. Now we have to look into getting a portable ramp because its not reliable and we can’t risk getting stuck in a situation like that again.

Same thing happened with the porch lift on the house. Not reliable at all, keeps breaking down. Its so unreliable that the provider that installed it is dropping that manufacturer from their lineup. They refuse to replace it of course so we’re stuck with it.

I’m getting so disgusted with getting ripped off by these companies that provide faulty equipment for people with disabilities. I think I’m going to start blogging about it and warning people about what can happen. Some of the providers care and have helped when they can, some don’t. Once they get their money, its your problem, not theirs. In one instance, I had to talk to the company owner to get a mistake made by an installer fixed. It took months.

Our water softener went kaput last week, and that’s going to cost over $2000 to replace. We have very hard water here so we need a reliable system with a decent warranty. What next?

Trying a new eyedrop med today, my eyes got really bloodshot and sore a few hours after using them. Not fun, but I’m hoping it’ll go away after a few days.

I had another bad reaction to the new eyedrops and the doc said don’t take anymore. He’s out of samples I can try and prescribed something else. I have to pay out of pocket, no coverage right now, so I hope its not expensive. I also hope it works, because we’re runing out of options.

What a month this has been. I had another bad reaction to meds, this time it caused a complication so severe I ended up in emergency, on IV antibiotics and IV benadryl. Been on antibiotics and benadryl for over a week now, still not well.

My eye surgeon's office called and said he wants me to come in as soon as I'm well enough, and discuss SLT surgery for glaucoma because I'm having too many serious reactions to the eye drops we've tried.

Not what I wanted to hear, but if it works, maybe I won't have to worry about eye drops.

Got to see my eye surgeon this week regarding laser surgery for glaucoma. I'm getting very nervous. The thought of anyone messing with my eyes just creeps me out!

I'm still recuperating from an illness, and probably should postpone, but I've got to get to the appointment because once the snow stays, it'll be nearly impossible to get my wheelchair out of the house and into the van, until spring.

Saw my eye surgeon this week, it didn't go well. I spent about 2 hours waiting, and then didn't get any time to ask questions. I had to argue with him over his sudden and unexplained decision to NOT treat my glaucoma for the next 6 months.

I am NOT impressed, but you can't switch doctors around here. I spent all my appointment time convincing him to go ahead and treat my glaucoma with SLT laser as he had originally planned.

He was rushing people through like crazy, and we all spent hours waiting to see him.

Confused and disgusted.

Emmy have you considered contacting Joslin clinic to discuss your situation with the eye unit here?

I don't know your situation, but if you are in any way able to see someone else, it might be a good choice. It seems your Dr is not very empathetic or caring with his patients. Drs forget this is your eyesight not theirs.

As long as you have heath insurance you should be able to at least get a consultation.

Here is their referral form

And their direct number: 617-732-2552.

They also have a system called the Joslin Vision Network for people that cant come see them. You get your eyes scanned and the hi res images sent to their top specialists for consulting.

Contact Information

To learn how the Joslin Vision Network can be incorporated into your practice, contact:

Jerry Cavallerano, OD PhD
Joslin Vision Network
Or email Jerry Cavallerano

Good luck!!

Hi Josh,

Thanks for the suggestion, but I don't live in the USA, and can't travel. I also have no private insurance. I'm afraid Joslin wouldn't be able to help me at all. Where I live, doctors are few and far between, and we have to stick with who we get when referred by another doctor, or we go without. Specialists are very hard to get an appointment with. Whoever your doctor refers you to, if the person you're stuck with, like it or not. Without a referral, you're out of luck.

My mother was diabetic too, and for most the last decade of her life, she had no doctor. She had to get her insulin prescribed by a free clinic, and they kept changing her doses around, etc. This was all because her doctor got upset by something she did, and decided to dump her as a patient.

If I raise too much of a stink, he'll dump me and I won't be able to get another doctor. Its not right, but that's the way it works. You have to be very diplomatic to get anything changed.

Oh I am sorry. I assume too much when I give suggestions sometimes. ;-/

I still have family in Canada. Frasers and Emmerys. My grandmother snuck over the boarder from Nova Scotia when she was 18 back in 1929 ;-) Funny she got here right when the depression started. Lucky her.