Now I have a blind eye

BeckyTice

Detached retina turned sour..... they changed the positioning protocol and a bubble appeared that pushed the lens out.... requiring more surgery.... oh brother... now I'm blind in one eye.... poop

alivenwell

Glaucoma did me in.

Jayne

Oh no - that's awful! So sorry to hear that, can they reattach it?

BeckyTice

Thank you for responding. I'm embarrassed that I haven't been on this forum for a long time. I was trying to ignore being "fragile". I was going on 2 miles hikes every morning.... that's how healthy I got.... and then I tripped.... and then I started really seeing the "light".... it's actually flashes.... and my eyes stopped seeing so clearly. It was really quite slow... but when it went... I knew I was in trouble.

They put a buckle on it... to hold the retina in place.... and added some air to hold it there..... but that didn't work completely... so they cleaned it up again and put some oil in there.... and that held it in place so it healed.... then they had to take the oil out and put air back in.... my body would replace the air with the fluid we all make for our eyes..... but they made a mistake in the post op instructions..... and the air pushed my lens loose. I had to have another surgery.... they took the lens out and filled my eye with silicone gel. I was on steroid drops for so long... I've developed a thick cataract that the doctors can't see through. And the doctor says he doesn't want to bother my eye any more because it's stable now. It's stable but I can't see. It doesn't "look" bad but it doesn't work.

So... now I am learning how being blind in one eye can change my life. I can't see most of anything to my right. I can't drive. I run into walls and tree branches. Geeze.... oh and another pleasant side affect.... I can't see to clean my house... it's driving me crazy....

It's not as bad a cancer.... but living blind is not going to be cheap.... I have to get this figured out before my "good eye" goes bad.

Carool

BeckyTice, I’m glad you’re back, but sorry, of course, about the reason.

Maybe it’s a stupid question, but I’ll ask it anyway: Have you had a second (third, etc.) opinion? Given the advances made in opthalmology, isn’t there something that can be done to restore at least some of your sight?

I know you’ve probably had many opinions by ophthalmologists, so I apologize in advance by presuming I’m adding anything of help. I guess I just don’t want to think there’s no way that you can regain your sight in the afflicted eye.

alivenwell

Can they zap the detached retina with laser surgery?

BeckyTice

I found another doctor who did a lens replacement on the "good" eye and it works great. I'm supposed to see him this Thursday for a follow up. I'm going to ask him again if there is any way to save my "bad" eye.

I got a second opinion.... or I tried to at least.... but the second opinion doc couldn't see past the hard cataract that has formed because of the steroid drops I had to use for nearly a year.

So.... I'm having a conversation with the new doc to see if he and his trusty laser can remove that cataract and replace my lens. Baited breath.... Baited breath....

I wonder if the chemo made my eyes weaker..... something to think about on the other side.... are their precautions concerning certain chemo drugs that we should be aware of? Not meaning to bring up more terror for anyone.... just wondering if there is another step oncology can take in the future.... getting wiser... not angry.

Thank you for responding.... a third opinion will be requested Thursday the 20th.

legaljen1969

It sounds like you are really having a rough time of it lately. I am sorry to see this news. I hope they are able to come up with something to restore some, if not all, of your vision or at least make things a little easier for you in some way.

I think we all try to ignore being "fragile" because we hate being "fragile" and don't like to have people treat us that way. That said, do as much as you can do safely.

Keep us posted.

Carool

I’m glad you’ll be getting another opinion. I hope that doctor will be able to remove the cataract and replace your lens. Please let us know.

alivenwell

Regarding your concern, chemo destroys both healthy and unhealthy tissue. I had extremely high intraocular pressures. But someone in my family without chemo had the exact same eye pressure issue. I imagine chemo does not help it much. They are working on creating vision restoration.
Our bodies are just machines.

alivenwell

I am still going on a healthy walk in spite of your story. I think I need a dog.

BeckyTice

I want to thank you all for helping me out so much. If the doctor told me.... going the chemo route might... just might... not probably.... cause problems with your eyes.... I would have still gone with the chemo... because blind people can go on with at least part of their lives... while dead people are just dead.... I would have opted for chemo. I got to remission... I moved out west... I hiked up the side of a mountain.... and on a morning hike around the neighborhood... I took a fall... that scared hubby..... and I'll have to deal with that as well. He's been through all of this with me... and my fall scared him..... and now he goes walking alone.... around the neighborhood.... and he's waiting for me to get my sight back..... alivenwell..... humans do better tricks than dogs....

Carool

But cats do better tricks than humans OR dogs.

alivenwell

I miss my dog. Ironically, while I was having chemotherapy, she had cancer that was undetectable in her heart and arteries. She was a mix of border collie with a few grey spots of springer spaniel.
I really wish they come up with a cure for this insidious disease and horrendous treatments.
On the positive side, I do play piano and thought it was just me, but I have seen other pianist on YouTube play incredibly excellent music. They must have the whole piece memorized.

alivenwell

Carool, have you seen cat agility? It is humorous.

Jayne

I have a young female kitten and a very old male mini-schnauzer (18!!!). She is gorgeous, but aloof.... he is the one who greets me with the most enthusiasm every time I come near him! Unfortunately he had a rough night and we are waiting on the mobile vet. Lots of vomiting and kind of woozy and unsteady this morning-I'm sure he is dehydrated. The cat is watching over him closely since they are good buddies. My poor husband - the dog decided to do the bulk of his illness in our master closet on my husband's shoes - at 1:30 am - not a good evening. :-(

alivenwell

He might need an IV.

Carool

alivenwell, I didn’t get a WN notice of these comments (I hope WN isn’t once again not sending the notices). I just happened to check in here.

No, I haven’t seen the cat agility video, but I’ll find it now. Thanks!

I’m sorry about your dog. It’s so hard when they die.

Carool

Jayne, I hope your dog is doing much better. I just saw your comment.

legaljen1969

@Becky, I wanted to comment on a few of your responses throughout this thread.

It seems that the surgeries they have done on your eye are quite complex and delicate. You have been through a lot.

I agree with your assessment that, even if you had known it could cause problems with your eyes, you probably would have gone ahead with chemo. I am lucky I did not have to go the chemo route with my cancer. For that matter, not even the radiation route. BUT when I first got my diagnosis, I would have probably done anything they recommended so I wouldn't have the cancer in my body. All of my treatment team is quite conservative in their treatment approaches, so I was basically given the options that would be the least intrusive to my life. They all let me know that I could elect to pursue more aggressive options. My medical oncologist said "There is nothing I can do to stop you from pursuing chemotherapy and finding someone who is willing to give you the magic pill in the corner of the parking lot, but that's not where I think we are right now." If someone had told me that my cancer was bad enough to need the scorched earth treatment that chemo CAN be, I probably would have given it a go. If I were given a list of "maybe" side effects, a list of "probably" side effects, and a list of "this is going to happen" side effects- I would definitely need to take time to weigh them all out- but I think it would take more "probable" and "definitely" things to make me decide it wasn't worth it.

You have a very positive attitude. I hope you will stay active on the site. I think you have a lot to offer in terms of making this an inviting and encouraging forum.

meyati

Gee, that's scary---we feel good then somebody trips or chokes on a pill or something-and we realize that we are fragile. I'm the one that choked on a calcium pill on New Years Day 4 or 5 years ago. I was swallowing the pill and turned my head. My son did the Heimlich twice--but I kept choking as it dissolved. My face was sort of blue- and if it got bad-what would my family do? We trotted over to the ER-and I had calcium and blood around my mouth. We sat and watched the Rose Bowl until my oxygen level came up and the pill got small enough to finally swallow.

Warning- if somebody says something or you hear your dog, while taking pills DON'T TURN YOUR HEAD-

legaljen1969

Meyati, it's crazy how little "freak accidents" can be so difficult. Just a small "trip" or a little choking that can't get stopped.
So glad you made it through that choking thing. That must have been super scary.

meyati

Thanks, they kept asking why I went to the ER. My son kept saying-- she's blue and has blood and calcium on face. She washed her face before we came here. I told them we live about a 1/2 miles from a fire station but it took at least 20 or 30 minutes to get here---I fell off a ladder and messed up both knees, and a friend had a grand mal seizure. Then the 911 operator sent them to the wrong address---my son moved here in the 1990s, and I moved in -May 2020--I was out in the snow, chasing the EMTs. They finally listened to me when the neighbor screamed and slammed the door in their faces.

alivenwell

legaljen1969, do you have a guilt inflicting stare to get past those conservative doctors?

Carool

BeckyTice, so, did your doctor and his trusty laser help you see? Please update us when you feel like it.

BeckyTice

I am so sorry... my notifications got shut off.... and I didn't realize it....

So... here's an update.... I'm blind in the right eye.

No... the chemo was not a direct cause. It probably made my eye a little weaker bringing on the floaters I experienced for years but it didn't cause the blindness.

It turns out... the place I live is on a mesa about 400' above the floor of the valley.... I'm not in the mountains.... and my community is considered part of the valley.... and no one considered it a threat.

The doctor gave me two rules.... keep my head parallel to the floor for five days... and don't get on a plane. I followed both rules. BUT I went home after the surgery.... on the interstate at 65 miles an hour.... for 33 minutes.... up.... 400'.... and then the next day.... I went to his office in the valley, where they questioned the pressure in my eye.... and then I went back up 400' and no one checked.

If I had gotten on the plane... my eye would have exploded with the expansion.... but since I only went up 400' in 33 minutes at 65 miles an hour.... the retina only ruffled [star fold].

He could have used oil for the first surgery or I could have stayed at my daughter's house in the valley... really in the valley... not just tax purposes in the valley..... either would have worked... but no one checked.

So... go get your chemo.... get rid of the cancer.... get your antibiotics... get rid of the lyme.... it's better to do that..... but if you are having retinal surgery.... definitely check out the route to the doctor's office and home.... you can only travel 29ft/min uphill before the gas begins to expand.

legaljen1969

@Alivenwell,why would I need a guilt inducing stare to get "past" those "conservative" doctors? I was and am fully on board with their treatment decisions. Conservative treatment does NOT mean negligent undertreatment. It does not mean they were unwilling to consider more aggressive options. It means that they were willing also to consider what treatment options were adequate to treat MY cancer in MY body and cause the least interference with my life, after many meetings with me to determine how I wanted to proceed.
So, yes all cancer is bad but mine was mostly "not bad." I was able to have a mastectomy of my left breast and it got everything. That is, everything at the time. I know something could occur in the future, but they did not recommend a scorched earth approach for the cancer I had.
Reading more on this site each day, I am incredibly thankful that my doctors treated me with a conservative approach. If I had thought they weren't aggressive enough, I could have gotten a second opinion- or a third or fourth.
Years ago, I broke my ankle. I had two options (1) plates and screws and a long recovery time OR I could strictly follow doctors orders and not bear any weight on my ankle. That would require a wheelchair and later a walker for a slightly longer time, but no surgery. At the time, I was trying to finish my student teaching and I was told that, since I had someone to take me to and from the school, I could resume my student teaching in a couple of days. I broke my leg on Friday and was back to work/school on Tuesday. If I had elected for the surgery, I would have had to take an incomplete on my student teaching and wait a year to do re-do it. With the non-weight bearing and casting option, I was able to get back to my life. Definitely the more conservative treatment option at the time.
Back to my cancer diagnosis and treatment, not everyone's situation warrants the maximum chemotherapy or radiation. Not everyone's situation requires being enrolled in the latest clinical trial. I was thankful my doctors started with the least invasive options and were willing to talk me through the potential treatment continuum.

BeckyTice

legaljen1969.... I agree.... back when I was first dealing with the colon cancer... I had a PCP who helped me make decisions. My oncologist gave me information and time. My surgeons gave me time. Now I am in remission from the Metastatic Colon Cancer.... I just had a perfect blood test... [no they did not run the blood test for colon cancer because I am not in pain and it is not growing]

The surgeon who did my eye.... he treated it like it was an emergency but gave me an 80% bet I would get my sight back, sans the floaters..... and then he omitted a step and I lost my eye. I didn't have time to check with my PCP. The PCP I had at the time was not available for me at all.... My insurance company helped me replace him.... and my new PCP is great but when this was going on... I was alone. The surgeon omitted a step I didn't know existed until I was blinded.

legal jen.... if you are a lawyer... I could use your assistance..... I've done a lot of research since March 29th.... when the surgeon told me I am blind now in that one eye. Problem is... he lied on the record... my medical records say he told me 5 days before Christmas that I should get use to living with one eye. WTH.... don't you think I would remember that.... and he claims that positioning after having a gas tamponade put in the eye isn't necessary.... that's in writing.... he signed off on it.... gas... not stable caulk like gel... gas.... which expands and contracts....

His lawyer says I need a lawyer and a medical expert.... I say I need my sight back.... I'm not getting what I want.... it's just not going to happen.

I'm glad we are both past the cancer stuff... at least for now.... we never know what's around the corner... but it's good to have a site like this where like minded people can discuss.

Thanks for responding.... Becky

legaljen1969

Becky, first let me say congratulations on your perfect blood test. That is great news. It's always good to get a good report.

I am not a lawyer. I am a legal assistant. I have worked in the legal field doing many things, but medical malpractice is not an area I have worked. In personal injury, I have done some review of medical records. It sounds like you have reviewed your records pretty thoroughly and have a good idea what is not accurate.

Now, for one brief moment, I am going to play devil's advocate. Though words/semantics are very important, is it possible the surgeon did say anything to you about "getting used to living with one eye" even if in different terms? Do you have someone with you at appointments to be a second set of ears or a second mind? I know I think I hear everything my doctors say to me, but I often find I have missed something if my husband or friend asks a question to the doctor OR if they ask me a question later about something that was said. I am sure it has been difficult to have anyone extra at appointments in this past year with COVID, so, many of us have had to turn our listening ears on more intentionally and attentively.

How did it come to be that his lawyer said you need a lawyer and a medical expert? How did you come to talk to his lawyer? Did you file a grievance against him with the medical board or something?

Here is my takeaway on it. He (the surgeon) has a lawyer, who has told you that you need a lawyer and a medical records review. Try to find yourself a lawyer and someone who can do a medical records review for you. Usually the lawyer will know someone who does the records review and may have someone on staff. It definitely does not sound like his decisions were the best ones based upon your point of view and what you have presented (I don't doubt anything you say. I do wonder what his account will sound like.)

Carool

BeckyTice, I’m so sorry, of course, that you are now blind in one eye. And that the blindness could’ve been avoided had your doctor better informed you of what to do and not do after your first eye surgery. He should’ve known that in your area you could drive very high up.

BeckyTice

Thanks Carool.... you've hit the nail on the head.

legaljen1969, According to his lawyers, he says I had a "complex retinal detachment and he did everything he could do." To me that sounds like a "poop happens, can you afford to prove me wrong" defense. I think his lawyer is saying "are you smart enough to file in time?" defense. I looked it up... I have 30 days after filing to submit a medical expert if the court decides I do in fact need one. The court could allow me to proceed Pro Se without a medical review... If I can prove any ninny can see it.

I am retired now.... thanks to the cancer... anyway.... I started reading about what I could do.... at first it was pure anger that was driving me.... but then when I started to get a better picture.... it was cathartic. You know, it's the "oh God what have I done" turned to "Why did I trust this guy?". He's a nice man with three boys... and on top of that he moved to Arizona from Miami, Florida.... this guy has really been through a rough year too. I have not seen him since the Condo Collapse.... I hope his mom and dad are ok. I don't know where they live but I guess they live in the area.

I knew I only had a certain amount of time to file something.... and I would prefer not to have to go to court. So I wrote a letter to the main office, and the location where the surgery took place, and the lawyer replied. She is the one who warned me. So I wrote her back.... and laid out what happened [positioning part] but I hadn't learned about the elevation part yet. I just knew I shouldn't get on a plane. The lawyer doesn't know I know about that "omission".

My first surgery was 11/14/19 so I have until 11/14/2021 to file. I sent the lawyer a demand letter by certified mail. I would be happy to send you a copy. I gave them 10 days.... they received it certified on July 15, 2021. I looked up the cases her firm handled in google scholar. I actually found some cases his lawyer had something to do with. She used "medical record review" against the plaintiff in three out of four of her cases. It works so she's sticking to it.

I plan to file my papers with the AZ superior court by August 1, 2021. I plan to ask the court to allow me to file Pro Se and show the elevation argument as "any layman can see" argument. I hear that might work. Meanwhile I'm looking for another doctor to give an expert witness.... and the money to hire them.

There was a witness... another doctor.... He's the one who called my surgeon out for not giving me the positioning instruction. But I hesitate to ask him to put his job on the line again. He's an honest guy with a family. I will only call on him if I have to.

I've been posting a Bible Study as "hotcoffee" or "seekeroftruth" on line since before 2009.

htttps://forums.somd.com/forums/religion.30/

Does it make sense that I would not have called out my prayer warriors December 20th, 2020, if he told me I was going to be blind? I mean Jesus healed the blind.... that's just too easy to deny! I know me... I would have hit my knees.... I'm that zealous. I looked back at my posting.... crickets.

So thank you for your reply.... hope this helps some get their mind off their problems for a few minutes.... that would be an excellent outcome..... thank you all for reading... an letting me talk. Hubby is really tired of this conversation, but he doesn't say so.... he just gives me that "oh my" look.

Thanks again... Becky