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Fri Jul 19, 2019, 10:01 AM

had cataract surgery June 6, then complications

I had retinal bleeding 20 years ago, and it was stable since then. I thought I was having a problem in Oct 2018, so I saw the dr. who diagnosed me. He examined my eyes and said the retina was stable, but I had cataracts. I saw him again in April 2019, and he again said the retina was stable. I scheduled cataract surgery in June. They gave me pre-op paperwork, but didn't go over it with me. I had the surgery but no follow-up until the end of June. At that time, the dr. said I had retinal bleeding and sent me to a retinal clinic in the same town. I was treated with a shot in my eyeball, which I felt and was painful. I was scheduled to have another shot today.

I am in emotional turmoil because my vision is affected. I have anxiety and depression anyway, and I have been in a tailspin all month. I went to the dr. who followed me for 19 years and he said nothing about the risk I had because of the history of retinal bleeding. Nobody said anything. The retinal dr. diagnosed me with macular degeneration, but only because my sister has been getting shots for it this last year. Of course, none of the dr. are going to say anything about the cataract surgery affecting the retina. I have heard nothing from the dr. who did the cataract surgery.

Anyway, I am still using the eyedrop for the cataract surgery and I called the retinal place yesterday to see if I should stop using the drop until after the treatment, hoping to head off the pain I suffered last time. She said to keep using the drop and said she'd make sure the dr. gave me extra numbing. So I went this morning. My b/p was high and they wouldn't treat me. No one bothered to tell me that information either, and I read the papers they gave me when I got home. I am just so po'd. They want to reschedule, and I said why? I am anxious about this whole situation and my bp isn't going to go down. They were willing to reschedule me the end of August, a month delay in the treatment, so maybe I shouldn't worry I might lost the rest of the vision in my eye. I just remembered as I was writing this that the eyedrop can cause my blood pressure to go up, and the nurse told me to use it before I came.

I am thinking about going to Cleveland Clinic. I can stay with my friend who lives there and maybe get treatment that is focused on my needs rather than a Medicare reimbursement and what is good for the doctor. I wish I hadn't had the cataract surgery. I am sharing this here because I needed to vent. Thanks for being a place I can spout off.

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Reply had cataract surgery June 6, then complications (Original post)
Marthe48 Jul 2019 OP
pangaia Jul 2019 #1
Marthe48 Jul 2019 #6
pangaia Jul 2019 #13
Marthe48 Jul 2019 #14
onecaliberal Jul 2019 #2
matt819 Jul 2019 #3
Marthe48 Jul 2019 #7
still_one Jul 2019 #4
Marthe48 Jul 2019 #8
still_one Jul 2019 #10
Marthe48 Jul 2019 #11
soryang Jul 2019 #5
Marthe48 Jul 2019 #9
Marthe48 Jul 2019 #12
nilram Jul 2019 #15
Marthe48 Jul 2019 #16
Marthe48 Aug 2019 #17

Response to Marthe48 (Original post)

Fri Jul 19, 2019, 10:08 AM

1. Medical practice in many places is not what it used to be in terms

of treating a human being.
You have to take responsibility for yourself, which you seem to be doing.
BUT, you MUST beat them over the head with a stick. Again and again. Don;t take no or no answer for an answer.

I could tell you similar stories, but not as bad as yours... Involving cataract surgery in 2017,, lymphoma in 2012 and throat ulcers last week.

..... but I won't.

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Response to pangaia (Reply #1)

Fri Jul 19, 2019, 11:44 AM

6. You can share

It'll help me settle down. Hope things are better for you.

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Response to Marthe48 (Reply #6)

Fri Jul 19, 2019, 08:20 PM

13. #1-- In 2012 I was having some serious back pain.

After months and seeing PCP, acupuncturist, phy therapy, etc.. I finally was approved for an MRI.
Sat afternoon I had the MRI at local hospital.. Specialist was home eating dinner and didn;t want to be bothered to come to the hospital to reads the results... I made a BIG loud stink and basically told the attending to tell that doctor to get his ass in here. Doc comes in, tells me there is a high 'growth' on my spine. He said he called the head neurosurgeon at STRONG HOSPITAL in Rochester who told him either put me in an ambulance immediately and send me to strong... OR.. OR get this.. OR to come into his office in ROCH Monday morning !!! I called my former PCP, a good friend, he said the local hospital was covering their ass about the ambulance and to go to office MOnday.

I did. the neurosurgeon said he NEVER said to hop in an ambulance. Anyway I had difuse large B-cell lymphoma Stage 2.. really stage 1.. I had 3 months of chemo and lumbar punctures and a bone marrow aspiration. and so far I' fine.

#2----2017 I had 2 cataract surgeries... results were not as dramatic as friends who had the same, but still better... During the 1st eye surgery I could "see' a color kaleidescope. During the 2nd eye surgery I saw a black and white one. I mentioned this to the doc after, He told me ."No, impossible. Both would have been the same." Yeah, yell. Just let me outta here. Thew day AFTER my 2nd one I developed what was diagnosed as "Bell's Palsy" on the same side of my face.. Doc said no connection.. Hu,,mmmmm maybe
Couple months later I was shopping for a trip to Portugal the next day. Suddenly my most recently operated on eye went blurry blurry blurry.. had to drive home like that.. Went to the Doc.. it IS common to develop scar tissue after cataract surgery and they can laser it out, which he did. BUT, he told me it did NOT come on suddenly, I just didn;t notice.. Fuck that shit, asshole..!!

#3----Last week, Sun July 7th- 2 hours after I went to sleep I woke up with an excruciatingly painful throat.. could barely swallow…. Never experienced anything like it.

My PCP was on vacation ( he is good), so I got an apt at the same practice with a PA..They are very good at getting you in if needed…. She said it was a sore throat! No way ! She did a swab, it came back negative for strep throat.. the SERIOUS lab test takes…. TWO DAYS !!! I go home, gets worse…much worse. I went back Wed. saw one of the doc, a new one,, too young... Also did a swab and RAPID result said NO strep..!! said she would ‘treat it’ as strep and gave me a script for amoxicillin. By that night I could not even swallow the pill..Mucous coming up and down every 15 seconds, all night.... By thurs am I had not eaten for 3 ˝ days( best way to lose weight, BTW) BUT, worse, had not been able to drink anything other than to take some pills Mon-Wed.. PAINFUL !!! Getting concerned about dehydration…
Finally Fri, over the objection of the stupid receptionist on the phone… I INSISTED they let me come in again… saw another doc, another good one. She looked in my throat and said Yikes ! That looks terrible. No wonder you are in so much pain !!!!! LOL.. I liked her right away…
Gave me a script for liquid amoxicillin.( OH—where the 1st doc said I would have to go to the ER for an amoxicillin IV if I could not swallow the pills.. WTF???) So this 3rd doc said throat ulcers!!! The worst she had ever seen.

Point being, I SHOULD have gotten a better diagnosis on monday but the PA didn;t know what the fuck she was doing... I WOULD have had the amoxicillan 2 days earlier...

Anyway, better now, but, as I said.. you have to Beat them with a stick !!!!

Not as serious as your situationm but same condition....

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Response to pangaia (Reply #13)

Sat Jul 20, 2019, 05:57 PM

14. Just saw your post, Pangaia

You had a couple of rough experiences. So glad your cancer was finally found and treated. It is so nice to have a good relationship with a knowledgeable dr.

My husband got an ulcer in his throat. He knew it was different than strep. We had Internet and he looked for his symptoms, thought it was a throat ulcer and went to the e.r. to get treatment. He got a smartass young dr. who didn't want to hear anything but his own opinion. My husband insisted on getting examined. The young dr. finally said, 'what, you want an ultrasound (or scan of some kind)?' very belligerently. And John says, "Yeah, I do." So the e.r. ordered a scan and it was a throat ulcer. He just hated to confirm what John thought. Mu husband saw a throat specialist and got laser surgery, which cleared up a lot of his chronic throat issues. It was just a joy watching him assert himself with the dr. It is just too bad we have to have those kind of experiences. The tv doctors say to go in well-informed when you see your doctor, but most of the drs. I know don't want to hear it.

I really hate eye doctors telling you that you aren't seeing what you're seeing. When I had the retinal problem in 2000, and had double vision where I saw one whole image and part of another of the same thing, the dr. who did the laser surgery told me I wasn't having a problem, and this dr. who did my recent cataract surgery and who diagnosed the retinal problem in 2000, also said I wasn't having a vision problem. I felt really betrayed. Why did OI stay with this dr? It was convenient. I went to Low Vision Services Of Ohio and that dr. who wasn't interested in covering any asses, diagnosed and resolved the vision.

I'm working now on going out of network. I feel like the specialist let me down, and the retinal specialist was not respectful. The insurance company seems ok with letting me do it. But I need a referral from my pcp. Which I hope will happen next week.

Good luck o n your future health and well-being.

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Response to Marthe48 (Original post)

Fri Jul 19, 2019, 10:33 AM

2. Sorry this is happening to you. I'd definitely go to Cleveland.

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Response to Marthe48 (Original post)

Fri Jul 19, 2019, 10:38 AM

3. That's awful

I won't make matters worse with a rant on health care.

Even when you're pissed off - especially when you're pissed off - you have to approach medical people calmly. I know this is a broad generalization, but they tend to clam up and get defensive in the face of a pissed off patient. Which is not to say you shouldn't talk. If you have to, go in with a list of questions. Ask them. And question everything you need to. If this, why that? If that, why not this? What will this medication do? Are there any interactions with other medication. Ask all the "what if" questions you need to. Don't refer to advice you've read on the internet.

I've been lucky with my ophthalmologist. You know he would like to speed along the appointment - after all, there are lots of people in the waiting room - but he will take the time to answer questions. What about this or that? Should I be concerned about this or that? And he isn't condescending.

I've written elsewhere about how my local medical facility is losing doctors and going to nurses for primary care. This doesn't apply in your situation, but I have found that the nurses happily spend more time and make sure you have every question answered. Maybe the eye doctor's nurses will play the same role on the specialty side of things.

Trust is crucial. If you don't trust a doctor, find another one. This may not be easy. But if it's the Cleveland Clinic or another eye doctor in your town, do it. Talk to your insurance company. I hate insurance companies, by my interactions with mine - Anthem - have been pretty good. They clear up questions about in network/out of network, what's covered, etc., plus their website, and I'm sure other insurance companies, have a find a doctor service.

I'm sure it's seriously anxiety-inducing, but if you begin to take more control over the process - or at least feel as if you are - then you're halfway there.

Good luck.

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Response to matt819 (Reply #3)

Fri Jul 19, 2019, 11:54 AM

7. I tried to be calm

The people in this office are definitely not able to think outside the box.
My daughter told me the steroid might raise my b/p, but I found the the pharmacy sheet and checked online, and there was no mention of raising b/p. I just checked my b/p with a wrist cuff and it is back in my normal range.
I've lost my trust and I hope to make other arrangements. I had already spoken to my ins. co. because I wanted advice about what I should do. I had an appt. last wk with my health provider, but had to cancel. My granddaughter developed appendicitis and had to have surgery, so all the careful planning for activity and babysitting was scrapped. So I'll try again.
Thank you for your helpful post.

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Response to Marthe48 (Original post)

Fri Jul 19, 2019, 10:41 AM

4. Wow, you have been through the ringer. I think what you have gone through it is prudent to seek a

consultation at the Cleveland Clinic. Ideally you will be seeing a retinal specialist along with others

I guess I would want to know if the retinal bleeding was due to a retinal tear or worse, a retinal detachment. I sure wouldn’t want to delay treatment if that was the reason.

Steroid drops can make you intraocular pressure go up, but it would be unusual for just steroid drops to make your BP go up.

If you IOP is too high, they should have given you drops for that, to try and bring the eye pressure down.

If they are giving you steroid drops for inflammation from the cataract surgery, the nurses advice to not just stop the drops is probably sound. Steroid drops that have been used for some time, need to be slowly tapered off to avoid rebound inflammation. Also, if your eye pressure is significantly high they should be addressing that also.

I think you need to find out more information, such as will delaying a month endanger your vision.

It might be prudent to make a list of questions to address your concerns, and maybe keep the appointment with the retinal clinic to find out exactly what you are dealing with, the plan of action, and risks involved.

I hope you are able to get everything under control

Take care

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Response to still_one (Reply #4)

Fri Jul 19, 2019, 12:14 PM

8. The visit today was a retinal specialist

I went to this office after the dr. who performed cataract surgery(to be clear the dr. who did the cataract surgery is the dr. who diagnosed the retinal bleed in 2000, and knew my history, but didn't mention increased risks to me before the cataract surgery) The retinal specialist who saw me initially said 'there is so much going on with that eye-myopia, something I didn't catch, something else. He said since my sister was being treated for macular degeneration, he'd diagnose me with that.' And in answer to my question, he said, 'If the cataract surgery caused the bleed, it would be very rare.' In the pile of papers I got from the cataract staff, the first warning was retinal bleeding if there was a history. I got the surgery paperwork in April, and I was either so tired or so busy the whole time, I glanced, but didn't read through. Close to surgery, I read about the eyedrops and pre-op ins. I helped 4 people through their cataract surgeries and I assumed I'd have the same good result.
I do the last drop tomorrow, then stop. I just wanted to see if not having a drop today would prevent the profound pain I felt last month. No talk about tapering, just a drop a day, 30 days,then stop. No one mentioned that my eye pressure was high. Thank you for your comforting text. I came over to let my grand dog out, and she is always good company.

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Response to Marthe48 (Reply #8)

Fri Jul 19, 2019, 12:41 PM

10. Sounds like the doctor dropped the ball, and instead of just throwing a pile of papers at you to

read, should have also mentioned increased risks for certain things.

I really hope they are doing something to address your severe eye pain.

Very sorry what you are going through, and hoping the worst is over, and you start to have a good recovery

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Response to still_one (Reply #10)

Fri Jul 19, 2019, 01:22 PM

11. Thank you

I only had pain when the dr. put the shot in my eye. And he says, 'I didn't think it'd hurt her that much.'

I haven't had much scratchiness in my eye. I've had pain on and off in my head, hoping that'll go away when I finish the drops. It could be the air pressure too, though. So much bad weather.

Thank you for your replies.

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Response to Marthe48 (Original post)

Fri Jul 19, 2019, 10:43 AM

5. The physicians will close ranks against you

...because you have complications from surgery. They won't reinforce anything you feel about circumstances leading to the surgical outcome. You could look for medical experts who will treat you and speak frankly about your medical situation because they've already crossed that bridge before (potential litigation) and aren't worried about the local community of physicians and what they think. It may be helpful to consult a medical malpractice firm to find a board certified expert who could offer advice or a professional reference.

I was in a similar situation and realized I'd have to go at least a couple of hundred miles to find a physician who would be honest. I was treated like I had the plague by local specialists.

Sorry to hear of your problems. It's very upsetting to find this out, I know.

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Response to soryang (Reply #5)

Fri Jul 19, 2019, 12:30 PM

9. Yes, they close ranks

In 2000, the dr. who diagnosed the retinal bleed (unknown cause) sent me to a retinal specialust in Canton Oh. for emergency laser treatment. That dr. Gave me a numbing shot that left me with a black eye that didn't heal for over 2 months. And something happened so that I was left with not-quite double vision that lasted for 4 years. Both drs. told me I didn't have a vision problem. The local dr. had the balls to say that they saved my vision and I should be grateful. I ended up finding out about Ohio's Low Vision Center in Columbus on my own and going there. An angel dr. there diagnosed my problem and prescribed lenses with prisms which corrected the vision problem. I was depressed the whole time my vision was skewed. One day, I felt a twang under my eye, and darned if the vision problem resolved. And within days, I was no longer deprsssed. I saw the dr. who diagnosed me initially and he said (again) that I have no vision problem. I stayed with him on dpite of the assery because I thought gaving the same specialist would give me some protection. I was way off. Thank you for your informative comments. I might consult a lawyer. Not sure yet.

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Response to Marthe48 (Original post)

Fri Jul 19, 2019, 03:27 PM

12. I called my ins.

And named names. And said I've lost trust in the drs treating me and I want to go out of network. So I'll get to it as fast as I can. Thank you for the support. I was so upset, I couldn't think straight. Discussing it helped. I've got good kids, but when I talk to them, I try to minimize things, so they don't worry. So thanks.

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Response to Marthe48 (Original post)

Sun Jul 21, 2019, 02:29 PM

15. If I could get to Cleveland, I would.

If not Cleveland, then just find new doctors--ones that will communicate with you. A friend had the potential for retinal issues and had a consult with an expert who improved the treatment plan for his cataract surgeries. He lives in Seattle, though, and there are lots of medical experts up there.

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Response to Marthe48 (Original post)

Thu Jul 25, 2019, 03:25 PM

16. Have an appt. at Cleveland Clinic soon

Just wanted to give you an update. I felt like my pcp was reluctant to make the referral, but I got it. The retinal dr. who wouldn't treat me last week sent her a letter, and a copy to me, in which he stated he was concerned about a follow-up locally. I told my pcp that the local retinal clinic was willing to schedule the next appt. anywhere from the middle to the end of August, so I didn't feel there was as much urgency as stated.

I hope that I am justified in my stance. Thanks for all the support since I posted. It is helpful to have a place like this to write out things like this. Happy Thursday!

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Response to Marthe48 (Original post)

Sun Aug 11, 2019, 10:22 AM

17. My appt. at Cleveland Clinic went well

3 drs. looked at my eye. One said she didn't think it was M.D. but didn't see any of the common causes of retinal bleeding. (I still think that A: my retina was stable for almost 20 years and B: it started bleeding right after the cataract surgery. To me, A+B= C) The other 2 drs. said it was M.D. I will hope for the best. One of the drs. said I still have excellent vision in the eye, so I hope it'll either stabilize with what I have or get better. She said that once the blood clears up, it'll be better. And new glasses will help. I was surprised at how well I read the eye chart. My left eye is healthy and they see no problems. I am luckier than most.

I saw my pcp and got my b/p med increased and so far, it is much better. Here's a kick: Cleveland Clinic Cole Eye Inst. doesn't think b/p is a consideration and they didn't even check it. lol

I got a 2nd shot, which did not feel like someone flicked my eyeball with their fingernail. Ifelt comfortable with the drs, that they were taking care of me and not worried about covering each other's butts. I have an appt for another shot next month. I get to see my best friend when I go, so I'll get a lift each time. She treated me to dinner, drove me to the appt. and we enjoyed catching. She had a kidney transplant in Jan. this year, and I am so happy to see how much better she is.

Thanks again for being so supportive.

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