New update page 4. Choroidal Osteoma, update post #47

[Amythestmama]

My vision has improved a lot. When it's bright enough I can see, it just is like looking through a light grey fog. But I could see some of the letters on the chart. Not the sign on the door though with letters the same size, it wasn't bright enough for that. My eye was indeed absorbing the blood and fluid from the hemorhage though. The OCT test didn't change, the size of the osteoma is the same, he did show me how you were supposed to be able to see through the back of the eye but how mine was just a layer of white in the "picture" because the light could not penetrate the bone. Anyway. I don't like getting the shots. My eye has a bloody spot in it and it stings and is dry so I've been using eye drops and that helps. The next shot is set for May 26th.

[Amythestmama]

The Drs office called today and demanded why we wouldn't just pay them the $1041 we owed them if we had $5000 in savings. And why wouldn't we pay them if we had insurance? And why were we saying we didn't? I asked what on earth they were talking about. The stupid financial worksheet I filled out caused more trouble than anything. Yes, H's paystub shows a deduction for insurance...LIFE insurance that the company has been required to have on each worker so that if they are killed on the job, there will be a way to pay to bury them. Yes, H has a life insurance policy that he pays for separate from the company also. But it's in case he dies, it's not like we can go say to them give us money! anyway. I asked what they thought? We were made of money and were just hoarding it or what?!? I asked why they'd call me mad about that when we'd never once said we wouldn't pay them, we just wanted the same discounts they'd give an someone who did have insurance. I explained why H has life insurance- he's the sole breadwinner and what am I going to do if he dies while I've got four kids to raise?!? They said you have four kids?? It says four here. We thought that meant you had a four year old. No, I have a 9,8,7,&5 year olds. Anyway. They wanted paid and they wanted paid now. No matter that the bill said we had 30 days to pay. I said they'd have to talk to H because he was the only one who could access the money to pay them, I could not. So they agreed to talk to him so he was able to pay them $885 instead of $1041. Now he's up in a knot about me getting the proper paperwork to CHM to get him reimbursed ASAP.
Then they also called back later to say that the drug company denied the application for the grant that would provide the drug for free. My diagnosis isn't eligible. The drug is made for macular degeneration not choroidal osteoma with choroidal neovascular membranes complicating it. They said they'd notify the dr and see what he said as to whether they'd offer any more shots to me. The dr did not call me so until he does, I'll assume I'm still supposed to go in on May 26 for the next shot.

[sweetpeasmommy]

Oh my. That is so unprofessional.

You may qualify for Medicaid based on your dx. Or social security. It's worth visiting your local office to find out. You may also qualify for one time aid from your county depending on income. A social worker should be able to help you tap into what is available


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[mipennsn]

Have you talked to the people at CHM for help talking with them?


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[Little Forest]

I am sorry about the way they treated you. I would write a concise letter to the dr advising him of the treatment you received from his staff and hand it to him! Or first ask to speak to the practice manager if that was not one of the people you spoke to you that way. That does sound so unprofessional.

I still absolutely would see about a second opinion on the management options for choroidal osteoma. I know it might cost a bit but that would be worth it when you have something like this going on.

[Amythestmama]

Originally Posted by mipennsn

Have you talked to the people at CHM for help talking with them?


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Yeah, they said I had to talk to them first and fill out papers to allow CHM to talk to them if they were to call them...but that they, the Drs office had to call CHM, CHM would not call them.
Frankly, I'm tired of it all. Trying to talk to this place and that place and figure out what to do and how to pay for it. Yes I will be sad to loose my sight in that eye, but if it's going to happen, why dump this kind of money into it and stress everybody out over it??

[sweetpeasmommy]

You are worth fighting for. That is why.


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[ShangriLewis]

You need to apply for state care and SSI now. They will usually pay back bills as well. Can you find another care provider?

[Amythestmama]

What is SSI? I'm pretty sure we(H) makes too much money to qualify for state aid. I don't know where I'd even look for another dr. I am planning to ask more questions at the next appointment which has been moved to June now.

[sweetpeasmommy]

I'm pretty sure you would apply for SSDI which is social security disability.


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[AngelaVA]

Originally Posted by sweetpeasmommy

I'm pretty sure you would apply for SSDI which is social security disability.


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Yes, the guidelines change a lot once you have a disability. And partial blindness is certainly considered a disability. You could apply for SSI and each state has different waiver programs, some of which can apply to adults (at least in my state) and allow you to get medicaid. It is complicated and confusing but could be worth doing.

[ShangriLewis]

Yes, SSI is based on your disability. People with disabilities are eligible for state medical or medicaid based on that. Even if you already have insurance it can pick up what they want cover.

[Little Forest]

I am *quite sure* that SSDI uses the definition of legal blindness as 20/200 or worse in the better eye (or a certain amount of reduced visual field which doesn't apply here), so if you lose vision in only one eye, it won't apply unfortunately.

I did a bit of reading up and it sounds like this is the current treatment protocol. There is a less expensive but less effective treatment of verteporfin plus a laser light which had been around prior to the Lucentis injections. That probably wasn't offered to you as an option though as it is not what they are usually doing for choroidal osteomas at the moment. It sounds like it is expected to get worse and then stabilize; is that the idea your dr has given you?

[Amythestmama]

Originally Posted by Little Forest

I am *quite sure* that SSDI uses the definition of legal blindness as 20/200 or worse in the better eye (or a certain amount of reduced visual field which doesn't apply here), so if you lose vision in only one eye, it won't apply unfortunately.

I did a bit of reading up and it sounds like this is the current treatment protocol. There is a less expensive but less effective treatment of verteporfin plus a laser light which had been around prior to the Lucentis injections. That probably wasn't offered to you as an option though as it is not what they are usually doing for choroidal osteomas at the moment. It sounds like it is expected to get worse and then stabilize; is that the idea your dr has given you?

Yes, he talked about the laser treatment to break up the edges of the calcification but said that at this stage, the calcified area is so large that the laser surgery was not an option as it would create a large scar area which would take away my sight now. He told me it would get worse, they don't know how long it will take, but eventually the entire choroid will calcify at which time the retina will detach and they won't be able to do anything about it because there won't be anything to reattach the retina to, it will all be calcified. I looked at their scan and there's only a small portion of the choroid that isn't calcified. The center is also very thick, it does thin toward the edges.
Today, there is a small blacked out spot in the center of my vision again. It's not nearly as big as it was before so I don't know what to think about that.

[Amythestmama]

New update: so far the bleed has now become fibrous and is no longer bleeding. The dr said it has responded well to the shot, yes I only got one. I asked him what his thoughts were about me not getting any further treatment until a new bleed comes up. He said he'd prefer to watch it and perhaps spot the beginning of the bleed and head it off with another shot but he could understand where I was coming from. He said there was nothing they can do for me other than the shot when a bleed occurs or seems likely so he said he'd be ok with giving it another check in 11 weeks and then letting it go until another bleed occurs. But. The pressure in my eyes has been consistently high at every check up I've had since the bleed occurred in April. It varies between 28-32 in both eyes. Highest it's supposed to ever be is 21 and that's considered concerning. So he wants me to see another eye dr to check that out and monitor it and possibly get drops for that or surgery. He said if the pressure is this high all the time, and considering my vision has noticeably declined already, that he feels if left untreated, I will be blind in 5 years. I have no idea how much that will cost- these new dr visits and treatments. I don't know if it's really necessary....research indicates that high pressure in the eyes means you are a glaucoma suspect...it doesn't mean you will have glaucoma, but it's an increased risk factor; some people just have higher pressure in their eyes and nothing comes of it. One study said that treating high pressure would prevent/lessen the impact of glaucoma in 4% of cases- literally 4 out of 100 and the other 96 people had high pressure that didn't do anything. The high pressure is unrelated to the choroidal osteoma so I don't know how CHM will handle that, it's a separate diagnosis, so I'm afraid it will start the medical bills all over and we have to pay another $500 for this diagnosis before they'll help. They still haven't done anything except say they've received the bills I've submitted. Anyway. Just trying to process it all and decide whether to seek treatment or just forget it since I personally can't pay for it.