# Christmas Wish (Maybe)



## HotGrandma (Sep 21, 2012)

Saw Doc yesterday, he had talked with an opthomologist the day before and describing my case to him. This opthomologist said he was willing to help with the "strabismums and eye lid surgeries" for 1/2 price. I see them the end of January for consultation. This would be great, but I can't afford to get my hopes up for more let downs. Wish me Luck


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## Andros (Aug 26, 2009)

HotGrandma said:


> Saw Doc yesterday, he had talked with an opthomologist the day before and describing my case to him. This opthomologist said he was willing to help with the "strabismums and eye lid surgeries" for 1/2 price. I see them the end of January for consultation. This would be great, but I can't afford to get my hopes up for more let downs. Wish me Luck


That is awesome and yes, there are miracles. I am excited! A lot of very wonderful docs out there who do gratis, doctors w/o borders and other missionary work.

You "know" I wish this for you!


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## HotGrandma (Sep 21, 2012)

Thank you Andros.

Merry Christmas to you and yours.

If you get a chance could you comment on my labs posted under "I want to get EVICTED from hypo-land in General Discussion. I am not understanding the trend nor my body pain.

Thank you


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## HotGrandma (Sep 21, 2012)

Saw the opthomologists Doc refered me to this moring after waiting 7 weeks. Their office is an hour away. Doc made it perfectly clear and so did I what my needs are. They were faxed a referal from another opthomologists, specifically stating, I need "decompression surgery" "lazy eye surgery" and "eyelid lengthening surgery". This Dr. came in tooting her own horn how she does all these surgeries and has all these "graves" patients. Examined me then said, she can't help me. So I asked her how many "graves" patients does she treat in a month? She just looked at me. Then I asked her how may "graves" patients does she see in a year. Again she just looked at me, no answer. Then I went off, that she just wasted my time and took my money under faulse pretences. Then she told me that I could make an appointment with another doctor there for next week to get a new prescription for prisms. I told her that I already tried that route and that NO ONE will make an adult prescription of 15BO prisms that they are over an inch thick. She went and asked that doctor and said I was right. Then she said she would be back after my eyes dialated. WHAT. You can't help me, but you dialated my eyes. UGGRRRH I am absolutely LIVID.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Saw the opthomologists Doc refered me to this moring after waiting 7 weeks. Their office is an hour away. Doc made it perfectly clear and so did I what my needs are. They were faxed a referal from another opthomologists, specifically stating, I need "decompression surgery" "lazy eye surgery" and "eyelid lengthening surgery". This Dr. came in tooting her own horn how she does all these surgeries and has all these "graves" patients. Examined me then said, she can't help me. So I asked her how many "graves" patients does she treat in a month? She just looked at me. Then I asked her how may "graves" patients does she see in a year. Again she just looked at me, no answer. Then I went off, that she just wasted my time and took my money under faulse pretences. Then she told me that I could make an appointment with another doctor there for next week to get a new prescription for prisms. I told her that I already tried that route and that NO ONE will make an adult prescription of 15BO prisms that they are over an inch thick. She went and asked that doctor and said I was right. Then she said she would be back after my eyes dialated. WHAT. You can't help me, but you dialated my eyes. UGGRRRH I am absolutely LIVID.


Something really has to be done here w/ the way doctors are interacting with their patients. This not good; not good at all.

I feel so bad for you; I really do and you are not alone. Many of us have been treated in the same manner. The worst part is that we have to pay to be abused and denigrated.


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## webster2 (May 19, 2011)

I am so sorry for how you were treated.


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## StormFinch (Nov 16, 2012)

Sounds like it's time to get out the ticked off patient letterhead again! Sorry it went so poorly.


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## HotGrandma (Sep 21, 2012)

Last try. I have an appointment with a "Pediatric Eye Surgeon" Friday 2/08 @ 10:45. They see one adult per day. This will be doctor #9. If they can't fix the double vision I will be out of options. Frogs are fine but I've been kissing toads.


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## HotGrandma (Sep 21, 2012)

Dr. Appointment in a little over 2 hrs and I'm a train wreck. My nerves are in knots. Which means I just set myself up to be totally devistated.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Dr. Appointment in a little over 2 hrs and I'm a train wreck. My nerves are in knots. Which means I just set myself up to be totally devistated.


{{{{{{{HotGrandma}}}}}}} You are in my thoughts and prayers!!!


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## HotGrandma (Sep 21, 2012)

Thanks Andros:

I feel like a bug that someone squashed on the wall, but still alive. Not sure if thats the good or bad part. I am so done hoping to not see double all the time.


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## HotGrandma (Sep 21, 2012)

Turns out that as long as I am on Methimozole I am not a canidate for any eye suegeries unless the optic nerve is in danger. Doc said that as long as I have a thyroid I will probably be on Methimozole the rest of my life. I could afford to pay for the eye surgeries but cannot afford the TT @ $40,000 plus. My prism prescription is the same 15BO and no lab makes them for adults.


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## Octavia (Aug 1, 2011)

I believe my surgeries were about $20,000 each. And they would have been less with no overnight stay.

What about a strong dose of RAI to kill it off? I would think that would be significantly less expensive.

So...are you saying that you can't get glasses, either?


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## Andros (Aug 26, 2009)

HotGrandma said:


> Turns out that as long as I am on Methimozole I am not a canidate for any eye suegeries unless the optic nerve is in danger. Doc said that as long as I have a thyroid I will probably be on Methimozole the rest of my life. I could afford to pay for the eye surgeries but cannot afford the TT @ $40,000 plus. My prism prescription is the same 15BO and no lab makes them for adults.


May I suggest that you go talk to your hospital about getting RAI at a reduced rate. The only way to stop the eye infiltration is to get rid of the thyroid. It takes a while but then the antibodies attacking the eyes soon quiet down.

I absolutely feel your disappointment.


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## HotGrandma (Sep 21, 2012)

Thanks Octavia and Andros:

My eye's have been Cold since September. Doc says my symptoms, labs, dosage amounts are all in range and under control, so he feels its time to proceed with any and all eye surgeries. The surgeon I saw does not consider me a candidate cause I have a thyroid. She wanted copies of my labs which I provided and she argeed the "graves" was under control.

My husband is disabled and sits home most of the day and the kids with 8 grand kids are in and out of our house a couple times per week. He and the kids all say no RAI, it would put them at all risk. Doc also says RAI could make my eyes worse then they were, if thats possible, but I guess anythings possible.

The "graves" has disfigured my eyes and the tissue surrounding them. Which is something I'm fine with, I just want to see without everything being double. People used to comment on how beautiful my eyes were up until I got graves. Now they are horriffic. There are tissue deposits below the eyebrow bone and below the eyes on the outside corners. The Doc agreed this wasn't swelling but excess tissue that placed itself there during TED. I look Asian, people don't recognize me. And all that's fine, I've never been vein.

I just want to see in singular. Going into a store there's 50 people times double vision equals 100, now the double is transparent, so people are on top of each other and over other images. Like the double of someone is in front of the milk, so their head is actually a gallon of milk and moving to the right and down, eventhough they are standing still. When people or things are moving I can't get a focus of them long enough to figure out whats going on before I think its gonna hit me in the face, but its the double image. If I'm in the right lane and a car passes me in the left lane, as it gets to my field of vision it becomes 2 the double passes infront of me then off the road to the right. Takes me so long to read more than a paragraph at a time.

My activities were photography, knitting, weaving and spinning wool. I have not been able to do any of these activities for the past 2 years cause of TED. Thats all I want, some quality of my life back. I am constantly walkin into things, the door jam, doors, tables, and it hurts and leaves bruses.

The prism glasses in the strength I need is 15 BO. I have tried to order these several times only to be contacted and told, their lab doesn't make anything over a 10. I did find one lab but they only make for children and place them in a headgear, not available for adults, no exceptions.

Then there are the press on prisms. Everything is blury, can't read anything at all, and everything slopes down hill to the right. Tried them for this new eye dr., and puked after 5 minutes, instead of walking into things I was falling into them. Hmmm, maybe I can lose that new 20 lbs this thyroid has given me. Sorry, if it sounds like I'm whining, I am not understanding why I can't get fixed, and I've been patient.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Thanks Octavia and Andros:
> 
> My eye's have been Cold since September. Doc says my symptoms, labs, dosage amounts are all in range and under control, so he feels its time to proceed with any and all eye surgeries. The surgeon I saw does not consider me a candidate cause I have a thyroid. She wanted copies of my labs which I provided and she argeed the "graves" was under control.
> 
> ...


Sadly, I agree with the surgeon you saw. If you still have a thyroid, you are at risk for a return of activity on the orbits.

I know many who had to have several orbital decompressions and now they have to have plastic surgery to bring their globes back up out of sunken orbits.

You do not want this to happen! Please trust me on this and this surgeon; she is telling you the truth.

Surgery and/or RAI can re-trigger the eyes. The fact is that any trauma can do that. It does not matter what the trauma might be. Even stress.

I had the strabisimus and it was scary and awful. I hear you loud and clear!!!


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## HotGrandma (Sep 21, 2012)

Thanks again Andros

Trying to wrap my head around all this. Let me know if I am grasping this correctly. 
1. I will be on Methimozole and have to be monitored for the rest of my life or until I get my thyroid out. 
2. No hope of seing singular till my thyroid is out. 
3. With the "Graves" marker I cannot get insurance. 
4. The TT costs $40,000 plus. 
5. Graves wins. I have no control. I am so overwhelmed.


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## Octavia (Aug 1, 2011)

HotGrandma...I'll be the first to admit that I don't know a lot about the upcoming so-called "Obamacare," but I think you should look into it. My understanding is that as of October 2013, nobody can be turned down by an insurance company because of a pre-existing condition, and insurance companies cannot require someone with a pre-existing condition to pay more for insurance coverage than a healthy person. I don't know if there's an "exclusion" time period where they don't have to cover the pre-existing condition, like many insurance companies have today. (Generally speaking, if I have been uncovered by insurance for 6 months, for example, then my new insurance doesn't have to cover my pre-existing condition for 6 months.)

Please look into it...it might give you some hope.


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## StormFinch (Nov 16, 2012)

Octavia said:


> HotGrandma...I'll be the first to admit that I don't know a lot about the upcoming so-called "Obamacare," but I think you should look into it. My understanding is that as of October 2013, nobody can be turned down by an insurance company because of a pre-existing condition, and insurance companies cannot require someone with a pre-existing condition to pay more for insurance coverage than a healthy person. I don't know if there's an "exclusion" time period where they don't have to cover the pre-existing condition, like many insurance companies have today. (Generally speaking, if I have been uncovered by insurance for 6 months, for example, then my new insurance doesn't have to cover my pre-existing condition for 6 months.)
> 
> Please look into it...it might give you some hope.


Actually, unless they've made changes that weren't widely documented, that goes into effect January 1st, 2014.


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## Octavia (Aug 1, 2011)

StormFinch said:


> Actually, unless they've made changes that weren't widely documented, that goes into effect January 1st, 2014.


Okay...I think we both might be right on this. Evidently enrollment begins in October...but I'm not sure if that means coverage begins then, or in January. It's pretty hard to find unbiased information about it.

Here's one website I found:

http://www.healthcare.gov/law/timeline/

And it contains this info:

_Coming in 2013: The Health Insurance Marketplace
Individuals and small businesses can buy affordable and qualified health benefit plans in this new transparent and competitive insurance marketplace. Open enrollment begins October 1, 2013._


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## StormFinch (Nov 16, 2012)

Octavia said:


> Okay...I think we both might be right on this. Evidently enrollment begins in October...but I'm not sure if that means coverage begins then, or in January. It's pretty hard to find unbiased information about it.
> 
> Here's one website I found:
> 
> ...


Nice info Octavia, and after following links it looks like there is an interim program in place for pre-existing conditions.

HotGrandma, check out this page; http://cciio.cms.gov/programs/pcip/index.html


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## HotGrandma (Sep 21, 2012)

Octavia said:


> HotGrandma...I'll be the first to admit that I don't know a lot about the upcoming so-called "Obamacare," but I think you should look into it. My understanding is that as of October 2013, nobody can be turned down by an insurance company because of a pre-existing condition, and insurance companies cannot require someone with a pre-existing condition to pay more for insurance coverage than a healthy person. I don't know if there's an "exclusion" time period where they don't have to cover the pre-existing condition, like many insurance companies have today. (Generally speaking, if I have been uncovered by insurance for 6 months, for example, then my new insurance doesn't have to cover my pre-existing condition for 6 months.)
> 
> Please look into it...it might give you some hope.


Each state has its own Insurance Regulatory Comission. Eventhough it will become a federal law each state will faciliyate its implimentation. One of the companies that denied me said under Obamacare I would be approved with a premium of $1200 per month with a $10,000 deductible and a 50/50 copay. Doing the math I still pay $40,000. She would not put it in writing and at that point I tried getting hospitals to put their quote for TT in writing. All have declined. In a business world you typically receive a quote and that's your price with few exceptions that is your contractural agreement. The doctors portion is around 5%. The more I dig into this the more corrupt the industry gets. I have been offered to pay up front $20,000 and make payment arrangements on the rest but cannot get a concrete amount on the rest. You can have trust in your doctors but never the indrustry. It all comes down to the all mighty dollar. The poor and illegals that have never paid into our government are covered. They would get the TT. The working middle class will be subjected to higher premimums and deductibles thereby will still not get as good of medical care that the poor and non working americans get. 
So until someone can put a reasonable written offer in my hand I have no hope of getting back to the things I enjoyed in life.


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## Octavia (Aug 1, 2011)

That's a great link, StormFinch!!!

HotGrandma, I know you must be extremely frustrated, but it seems that there MUST be options you are just not aware of yet.


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## HotGrandma (Sep 21, 2012)

Octavia said:


> That's a great link, StormFinch!!!
> 
> HotGrandma, I know you must be extremely frustrated, but it seems that there MUST be options you are just not aware of yet.


Thanks again Octavia and Stormfinch you too. I have even contacted "University of Health Science" a medical teaching hoapital. Thinking I could be a final exam for an ENT student (scary thought) but I can't get in there either.


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## Octavia (Aug 1, 2011)

Well...don't give up...you sound like a very determined and resourceful person!


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## Octavia (Aug 1, 2011)

HG...I just read this article and thought of you. Evidently, you're not alone in being unable to find out surgery costs in advance:

http://www.stltoday.com/news/nation...cle_5b99cb64-0bb9-5566-a859-79fa24fd2367.html


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## HotGrandma (Sep 21, 2012)

Thanks Octavia

I am learning with Graves I have to eliviate the stress. Its like writing someone a blank check to perform a service, that's not relieving the stress. You have to sign paperwork with a promise to pay for them to perform the service. I am not looking for a free ride here, but a reasonable figure in my mind would be around $10,000 cash.

I have a studio that contains (2) looms, (2) spinning wheels (5) sewing machines and a hugh stash of raw materials. I haven't been in there in 2 years. It was my life to create. I have spent the last 3 days in tears cause I now realize I will never be albe to use my talents again. I have secluded myself because I don't want anyone to look at how horrible I look. I am really having trouble comprehending that this eye stuff cannot be fixed.


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## Octavia (Aug 1, 2011)

You know...it's weird...ill patients who have insurance get a case manager, generall an RN who helps them nagivate the healthcare system to get what they need efficiently (with the goal of saiving the insurance company money over the lifetime of care). Seems to me that uninsured patients need someone like this, too...an advocate who can help you find the right services.

I think you mentioned that your husband is disabled and does not work? Are you employed, or is the double vision preventing you from working? If it's preventing you from working, could you not qualify for SS disability, as well as Medicaid or something like it? Grasping here...trying to think of something that might help.

:hugs:


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## HotGrandma (Sep 21, 2012)

The criteria for Social Security disability is "disability must last 12 months or longer or result in death". There is a minimum benefit amount that entitles you to Medicaid. Its Called SSI or Supplimental Security Income. Its implimented though Social Security but you don't have to have paid into Social Security to receive benefits, its just administered through Social Security. Comes out of the same "Pot". Basically, its federal welfare. Because I have worked all these years my amount would be over that amount and I would not qualify.

Someone should have told me 2 years ago that the thyroid had to come out before anything could be done with the eyes. Instead I have waited patiently, scraped and saved and can afford the eye muscle surgery. Counted on it, and poof. Strange how they can give me prices of the eye surgeries but not the TT. I just don't get it.


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## Octavia (Aug 1, 2011)

HotGrandma said:


> The criteria for Social Security disability is "disability must last 12 months or longer *or result in death*".


Well, crap...it's a little late by then, I would say!


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## StormFinch (Nov 16, 2012)

Octavia said:


> Well, crap...it's a little late by then, I would say!


Ha ha Octavia. 

Turns out, that's the only circumstance where they don't fight you tooth and nail. My father developed terminal prostate cancer and applied for disability when he couldn't work anymore. I figured they'd drag their heels about it until it was too late, but he had his first check issued in record time. I was amazed that a government entity could actually work that fast. :confused0068:


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## HotGrandma (Sep 21, 2012)

Hmmm, saw the eye surgeon again today. 6 week followup. She agreed my eye's are cold. No changes whatsoever in the last 6 weeks per her measurements. She agreed the prism prescription wasn't gonna work, as they cannot make eye glasses with that power and the press on's make everything so blury.

I am scheduled for eye muscle surgery on May 2, 2013, despite the fact that I still have a thyroid and am still on methimozole. THATS THE GOOD NEWS

The bad news I will probably still see double looking up and to the far right. HEY every little bit helps.. Right


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