I'm going blind

[mickey]

The news from my ophthalmologist on Tuesday was terrible. I have retinal issues, but they cannot be properly evaluated because of my very bad cataracts. The cataracts in my left eye already make that eye legally blind and within a year I'll lose sight in that eye completely. The right eye will take longer.

The ophtho was urging cataract surgery on my left eye as soon as possible, but I think his real motivation was frustration that he couldn't examine my retinas and see whether retinal issues would lead me to go blind anyway. He actively examined me for more than two and a half hours, not including waiting time, and at a certain point I lost my ability to endure any longer and quietly walked out, so it's doubtful that I could endure the more drawn-out process of surgery. Go ahead and berate me for being "immature" if you want because I don't care. I just happen to have problems far worse than potential blindness, as bad as that is, and toughlove doesn't make a paraplegic able to start jogging despite what my ophtho thinks.

I'm seeing my family doctor on Thursday and shall speak to him, but I made the appointment on short notice, so it will be in the afternoon. By the afternoon he is usually an hour and a half behind schedule and severely pressed for time, so I don't expect to accomplish much other than give him a summary of the ophtho appointment and get my prescriptions refilled.

Right now I'm just trying to enjoy the fact that I am still able to see my display and therefore participate in this forum. All too soon, even little things like that will be taken away from me.

 

[HoodedMonk]

Hm. Not sure what you want me to say. I've had a lot of surgeries.

You do sound fearful of losing your sight but perhaps it is just the cataracts and isn't as bad as you are making it out to be since you won't know unless a cataract surgery is done.

It does seem like you prefer ignorance to knowledge of your situation.

---

p.s.

you could still participate in the forum even if you lost your sight. You'd use a text reader program.

 

[Sometimes]

Wouldn't it be possible to get a general anaesthetic, if you are unable to tolerate the length of time of the operation? It sounds really important to get the cataract surgery done.

 

[mickey]

I believe, without being able to prove it, that I was diagnosed with borderline personality disorder in 1977, at age 12. Until a few years ago that condition was considered untreatable and was never disclosed to patients or other laypersons, so it's like a dirty secret that doctors have hidden from me for 38 years. Even now it would be too much of a risk for me to confront my doctors about their silence, because they could take nasty reprisals to cover their ass. That doesn't inspire me to lie unconscious and helpless under general anaesthetic while doctors are free to do whatever they want to me. So general anaesthetic is out of the question. And the bigger issue is that I am simply not capable of doing other things associated with surgery, such as not even having a sip of water from the previous evening until whenever the surgery happens the next day, or sitting in a hospital waiting room for five hours at the convenience of doctors while waiting for the surgery. That's part of BPD too and is something I'm not in a position to overcome without years of therapy for the BPD, and I don't have years before the cataracts become so severe that surgery would become too risky.

 

[Wayfarer]

Listen, doctors are not madmen that like to mess up your body for no reason at all. However I can understand the fact you fear the surgery.

My grandfather had to have this surgery performed on both his eyes. He had some serious problems seeing, before.

Please understand that I'm not attacking you. You should talk to your doctor and discuss all the options, also mentioning your issues. And if he ignores you or answers in a bad way, go somewhere else. To prepare for the surgery (if you decide on it, of course) I think it's best to have a person you trust accompany you; it could make it easier for you.

Anyways whether or not to have the surgery, you should decide yourself. And really.. *hugs*
Let me now if there are any updates, ok?

 

[Peaches]

so sorry to hear this
please please, go get a second opinion, with another specialist, not just the GP, and eventually get a third later - it's not just a waste of money a) perhaps it's not so bad b) in any case you will learn about a bigger range of options c) if you decide for surgery, you want to know the best there is

 

[mickey]

Peaches makes a good suggestion. I'll ask my family doctor whether he can send me to another ophtho in order to verify the first ophtho's findings.

 

[HoodedMonk]

Yep the proces for getting surgery is that you ask who your family doctor would have operate on him, go see them, and assess for yourself this person.

look for the best doctors. Go for an appointment. Interview.

etc etc.

 

[Shiloh253]

If it helps at all, I've had 5 eye surgeries (all on my right eye)

-Retinal re-attachment
-Procedure to remove scar tissue and implant a small bubble of silicone to hold the repaired retina in place.
-Procedure to remove said silicone and do more scar removal
-Cataract surgery (cataract unrelated to retinal issues)
-Just had a laser procedure done to get rid of some cloudiness in the artificial lens.

Not trying to make light of your situation, because frankly that just flat-out sucks, but in reality cataract and retinal surgeries are pretty straight forward, really quite safe, and easy to recover from. Cataracts especially. My procedure took all of an hour, if that. And if you're really nervous general anesthesia is always an option. I was recovered from that in about a week. The surgery was no big deal really. The eyedrops were a little annoying (have to keep to a schedule) but that was about it.

Retina operations are very similar. 99% of the procedure is done with a laser nowadays. You're asleep the entire time and if you keep up with the pain meds* it barely even registers. The only sucky part is during recovery, a lot of the time you have positional restrictions, meaning you have to be lying face down/looking down/laying on your side a lot of the time depending on where the tear in the retina is.

*I was prescribed vicodin for the first two procedures. I went through one bottle with the first one, maybe half on the second. After that ibuprofen worked just fine.

So basically:
-The surgeries are no big deal. Cataracts are one of the most commonly performed procedures in the US, and the medical field has that thing on lock. Retinal detachments are pretty frequent as well. Find a good specialist and get it done.
-Recovery is boring.
-Keep to the eyedrop and pain med schedule.
-Tell your doctor about any changes you notice.
-Recovery is boring.
-Seriously, it is. Get a ton of DVD's and books and get ready to not do a whole lot else.

Not saying that your condition isn't anything to worry about, since eye health is super important and all, but it's completely treatable. I've had eye issues since birth so I know the feeling (bilateral optic nerve hypoplasia in both eyes + nystagmus + what I listed above). You'll be fine

 

[mickey]

Thanks for the post. I decided to go through with the surgery after all for my father and brother's sake; I don't want to become an intolerable burden on my family. So now I'm just waiting for the surgery to be scheduled (this is Canada so such things take time).

 

[Shiloh253]

Thanks for the post. I decided to go through with the surgery after all for my father and brother's sake; I don't want to become an intolerable burden on my family. So now I'm just waiting for the surgery to be scheduled (this is Canada so such things take time).

Good decision! And seriously, don't stress too much. It seems like a huge deal right now, but eye/retinal surgeons do this stuff all the time. No worries brah. Enjoy the vicodin/Oxycontin after