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Sunriser13

(612 posts)
Thu Sep 28, 2017, 12:36 PM Sep 2017

Help requested, esp. Ophthalmologist/Retina Specialist

I put these questions here, as DU one of the most diverse communities anywhere, and GD is a much busier forum than Health so I'm trying to get more eyes on this post, no pun intended.

This might be a little long, but I'm trying to be thorough. Thank you in advance for any help - web searches just don't seem to be productive, or maybe I just haven't hit on the correct search terms, but all my searches give me info on the danger of losing vision instead of what I'm looking for...

I'm trying to get some information for my roommate, who has been completely blind since birth. She was born prematurely, and the part of her brain handling visual processing never developed. So vision "preservation" or "restoration" never enters into this equation. We're trying to understand two aspects in particular at this time.

She has extremely thick cataracts in both eyes that prevent the Ophthalmologist from even seeing her retinas, and ocular pressure is rising to dangerous levels. Additionally, there seems to be concern regarding calcification as well, so cataract surgery is pretty much an immediate necessity.

She has a physical inability to hold her eyes still, making it impossible to do outpatient surgery so the cataracts will have to be removed under full anesthesia. She has known difficulties with anesthesia, and has already had to be put under twice this year for hernia surgery, and they had big problems getting her to come out of it. Needless to say, this is of great concern to us, yet the doctor still insists on doing one eye at a time, necessitating two surgeries, knowing this will require full anesthesia in an operating room both times. We are trying to understand why the Ophthalmologist refuses to do both eyes at the same time. It's not like we need to check visual acuity in the first eye before doing the second... as my roommate says, she has nothing to lose nor anything to gain.

The second question regards pre-surgical testing. Now originally, ultrasound was recommended to get measurements for the intraocular lenses. That would have been covered by insurance and/or Medicare as medically necessary. However, we received a call this morning from the retina specialist's office about a different procedure being required, described only as an "optical retina assessment", which is not covered and will cost approximately $400.00 per eye. We don't understand the reasoning given for this - it was stated that this is considered in the same way glasses would be considered and thereby not covered. But since it is physically impossible for her to hold her eyes still for other types of measurement and the cataracts are too thick to see through, it would certainly seem logical for it to be medically necessary. Is there a problem with the proper medical coding perhaps, preventing coverage? Is the only option to appeal post-operatively, since surgery is scheduled for next week? (Besides, to my knowledge even glasses after cataract surgery are covered as medically necessary - for the sighted, of course.)

OK, this has gotten really long-winded, and for that I apologize. But if there are any questions please post, and I'll do my best to answer.

Thanks again!

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Help requested, esp. Ophthalmologist/Retina Specialist (Original Post) Sunriser13 Sep 2017 OP
Most likely, nobody on DU will be able to answer your questions. MineralMan Sep 2017 #1
Your friend could ask the doctor if she could just sign a legal waiver pnwmom Sep 2017 #2
Are you near a university medical center with good Ophthalmology school?? mitch96 Sep 2017 #3
Second opinion? Louis1895 Sep 2017 #4
This message was self-deleted by its author GusBob Sep 2017 #5
Is general anesthesia necessary? Louis1895 Sep 2017 #6
Google search: Nystagmus+and+cataract+surgery Louis1895 Sep 2017 #7
Thank you all for your responses! Sunriser13 Sep 2017 #8

MineralMan

(146,189 posts)
1. Most likely, nobody on DU will be able to answer your questions.
Thu Sep 28, 2017, 12:43 PM
Sep 2017

However, I would suggest that you contact the doctor again to discuss your concerns. You could also email that physician on behalf of your roommate to raise the questions, offering the same clear explanation you posted here. Perhaps the problem is one of communication and can be resolved by the medical professional in question. Again, since your question is so specific, I doubt you'll get a useful answer on this forum.

pnwmom

(108,925 posts)
2. Your friend could ask the doctor if she could just sign a legal waiver
Thu Sep 28, 2017, 12:48 PM
Sep 2017

saying that the risks of doing both eyes at once had been explained to her, and that she chose to do both eyes together anyway.

mitch96

(13,816 posts)
3. Are you near a university medical center with good Ophthalmology school??
Thu Sep 28, 2017, 01:09 PM
Sep 2017

Even if only to get a second opinion.. Med schools train people to do the right thing... Hell they might even cut you a break if it's an unusual case.. Just a thought. One time I called the med school down here in Fla to just ask a question and found out they were doing a study on the problem I had and did all the work for free!!! YMMV..
m

Louis1895

(768 posts)
4. Second opinion?
Thu Sep 28, 2017, 01:15 PM
Sep 2017

You do not say where your friend lives but it might be a good idea to get a second opinion.

I live outside of Philadelphia. If I were in your friend's situation, I would try to get a second opinion from one of the major eye hospitals in the city, like the Scheie Eye Institute at the Uiversity of Pennsylvania or Wills Eye Institute of Jefferson University.

Since the surgery is imminent, maybe you could get a quick consultation from someone if she had her doctor send her chart to them. Major medical centers in other cities will have experts as well.

Response to Sunriser13 (Original post)

Louis1895

(768 posts)
6. Is general anesthesia necessary?
Thu Sep 28, 2017, 01:25 PM
Sep 2017

The condition your friend has may be "nystagmus".

From: https://www.aao.org/eye-health/ask-ophthalmologist-q/is-it-safe-to-have-cataract-surgery-if-you-have-ny

Is it safe to have cataract surgery if you have nystagmus?

SEP 30, 2016

Question:
I am 59 years old and have congenital nystagmus (involuntary, rapid movement of the eyes). Now I have developed cataract in both eyes and need surgery. How would this surgery be performed while my eyeballs are moving? My ophthalmologist surgeon thinks he can handle it and wants to do it in local anesthesia. Would it be safe? Is there a safer way?


Answer:
I have performed cataract surgery on a number of patients with nystagmus, and I’ve never found it to be a particularly challenging problem. It is relatively straightforward to immobilize the eye with a second instrument while making incisions. Once the incisions are complete, having the surgical instruments in the eye dampens the nystagmus, and makes the procedure relatively routine.


Answered By: James M Heltzer MD

Sunriser13

(612 posts)
8. Thank you all for your responses!
Thu Sep 28, 2017, 04:15 PM
Sep 2017

I'm so sorry to have taken so long to get back to this post. I've been doing a massive amount of research, and spent nearly an hour composing a response to GusBob's post, which disappeared before I could hit post with that response.

We just spoke briefly with the retinal office, and while a b-scan was mentioned, the test in question is called an "ORA", which from what I can discover may be Reichert's Ocular Response Analyzer or another company's OptiWave Refractive Analysis, probably the latter since refraction was definitely mentioned. These again seem to be concentrating on vision preservation and refinement during surgery, a moot point where she is concerned. Any lens implanted would of course be plano, and only to protect the structure of the eyeball itself. Refraction is totally and completely unnecessary!

Still researching, and she's asked me to go with her tomorrow to try to help find out why they keep pushing this, both the double operating room (and hazardous double anesthesia for her), once for each eye, and tests and procedures which don't seem to even apply to her unique circumstances. It just appears that somebody is not listening somewhere - or Heaven forbid trying to milk more money out of the situation. Ophthalmologists across many of the sites I've perused who do both eyes at once, even for sighted patients, seem to suggest this as a possible reason, as well as just plain "old-school" ways of doing things. In other words, "It's just not done," without any real reasons as to why not. I can supply links to that research if anybody would like them.

Yes, nystagmus is the term for the "wandering eyeballs"! Every Ophthalmologist she's ever had has never been able to still them adequately for a proper examination without knocking her out, so that seems like it may still be the only option.

All that said, I think I've got her convinced a second opinion is warranted. I'd love her to be able to go to Duke Eye Center, but no possibility of affording that, as her insurance won't cover her there. Maybe UNC-Chapel Hill has something similar at the university, but she's going through UNC doctors here in Raleigh already, and her hospital, Rex, is now a UNC facility as well.

We're also looking at appeals procedures for BCBS and Medicare regarding medical necessity and why the doctor's offices couldn't justify it to them. That won't be let go of easily, either.

Thanks again - I'm still seeking answers, but maybe we'll know more tomorrow...

*sigh*

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