[laurafree]

#1182244

Hi gatorgirl,
I am thoroughly confused about the details of the surgery, but it will all fall into place (literally and figuratively) eventually. Two friends suggested I stay in a hotel in Phx for two additional days after my one day in the hospital before coming back to Tucson, so today I called the doctor’s office. They said many people do that – stay in a hotel but I am afraid of infection. Hotels are not clean.
I would prefer to drive home but will consider alternatives.
Laura

[gatorgirly]

#1182245

Hotels are cleaner than hospitals But honestly, I found being in my own bed in my own house so beneficial to my recovery. To each his own, but I would much rather sleep through a two-hour car ride and get into my own bed than stay in a hotel.

[snelsen]

#1182246

Agree with gatorgirly! MUCH better to be in your OWN home in your OWN bed.
It could be more complex to get the head of bed elevation you need at the the hotel. But that can be done, somehow, another thing to plan logistically.

I am not sure if hotels are cleaner than hospitals, many variables to consider. They most likely have a higher rate of bedbug infestation than hospitals.
At least hotels are not full of sick people, with the existing potential of a nosocomial (hospital acquired) infection. In addition, I am about 100% sure you do not have the choice of staying in the hospital an additional two days. That decision is not made lightly by the staff.

When in a hospital, my goal is to get out of there as fast as possible! All the things about your life which you usually have total control over, you don’t have, when you are there.

I would not want to be in a hotel. A couple hours ride home is nothing, in my opinion. My overriding thought was go to HOME to my OWN BEd which was all ready for me to crawl into. Home is always better.

Well, those are my thoughts! I vote for home.

As gatorgirly said, to each his own, so if you decide on the hotel route, you will feel good about that decision because it will be yours. But do weight the pros and cons. Your friends may not really know your situation.
Shirley

[laurafree]

#1182247

Hi SNelsen,
My sentiments exactly – best place for recovery is my own home, in my own city (Tucson), own bed, own germs, own refridgerator (for ice packs) – no brainer to me. I have been told that the surgery center will keep me longer than one day if there is medical necessity and trust them to do that. Apparently 2 or 3 days used to be the norm. This OD surgery should take care of my severe proptosis, which, in addition to being quite disfiguring, also poses an ongoing threat to my optic nerves and my corneas. No one has looked at my optic nerves for a while. Miraculously I can still see pretty well with my right eye. Left is sewn shut. Reading is challenging but I do it.

Meanwhile I have been reading the Forum thread about puffy eyelids and under eye bags, both of which I have big time, and thinking about the 3 additional surgeries I have ahead of me. The next one will be strabismus surgery, also in Phx, maybe 3 months after OD. This is a pressing problem because my diplopia is so severe I have to block one lens of my glasses to be able to function. I have been living with sight in only one eye for over a year now and am getting real tired of it. My left eyelids were sewn together (a tarsorrhaphy) to prevent exposure keratitis (and severe pain) from dry eye. After a year the lids have grown together in places, which is a good thing but it’s not a pretty sight. The lids will be opened during the orbital decompression surgery, but I will still have to block that eye anyway until I am able to have strabismus surgery. I will probably need prisims in my glasses as well as strabismus surgery to see one image. So after OD and the other surgeries, hopefully my eyeballs will fit in their sockets and I will be able to sleep on my side again, I will see one image with two eyes, my eyelids will close completely and cover my eyes, the unsightly fat deposits will be removed and I can get on with my life. After the first 3 surgeries, I am not sure I will be up for the last one, fat deposits, which would be the fourth surgery and is considered cosmetic. It will depend on my disease, which is still in the hot phase and how the other surgeries go.

I am doing okay with all this – slogging through it. It’s like a job. I have seen 8 eye doctors in two cities in a year. They all specialize. None seems to be coordinating my care. This is a big concern of mine because I am quite ignorant. Apparently the severity of my condition is rare. Looking back, I am sure my father had severe proptosis, but it was undiagnosed. He suffered terribly with no medical support, plus he smoked a lot which made it worse. I am luckier because of when I was born and I have never smoked. My mother was afraid to see doctors – she had a goiter and a problem but I am not sure what it was..

Laura

I am wondering how to include a little case summary at the end of my posts as some other people do? I will look into that soon. Don’t want to have to retype it each time. It will include the following:

TED (severe proptosis) and Graves Disease since 8/2012
Tarsorrhaphy, left eye, Jan. 2013
Methimazole 20 mg/day 2/2013 to 3/2013
Orbital Radiation, 2/2013 to 3/2013
Thyroidectomy, 3/2013
Prednisone, very high dose, 2/2013 to 2/2014
Synthroid .88 mcg/day, 3/2013 to present

[Ski]

#1182248

Hi Laurafree,

You can put that info in your “signature” — look in your “Profile” for this bulletin board, under the “Personality” link, and you’ll see a box for signature. Put whatever you like in there, and it’ll show up at the end of each post you make!

I see you’ve got lots of great advice on your question already, just jumped in to help out with the signature.

[cbgirl61]

#1182249

Hi,
I am new to this site and am looking for any information on how to obtain eye surgery. I have had graves since 1990, have had two RAI treatments 1 in 1990 and the second in 1993 shortly after my daughter was born. I have had the eye disease since that time also the doctors in Milwaukee said there was little to do. I now live in Eau Claire, WI. and after seeing a current picture of myself I NEED to do something. I look like a cyclops and it is very depressing. I do not have any medical insurance. Any thoughts or ideals would be most appreciated. Thank you.

[Kimberly]

#1182250

Hello and welcome! The first step would be a consult with an experienced ophthalmologist, although the lack of health insurance makes things more challenging. If you have had a “qualifying life event” (marriage, divorce, moving out of state, new baby, etc.) since the open enrollment period for the ACA expired, you still might be able to get insurance through the marketplace. Otherwise, here are a couple of thoughts:

1. If there is a teaching hospital near you (like a hospital associated with a university), those are often good about providing service to patients with financial need.

2. You can search for a doctor using this link; however, the challenge is that you would need to contact each individual doc to see how they would handle the insurance issues. http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1 (Note on links: if you click directly on this link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

3. There are a number of free and low-cost health clinics in the U.S. that serve patients regardless of insurance status. You can search by zip code here: http://www.hrsa.gov/index.html You might have to scroll down to see the orange “find a health center” box. Although they don’t usually have specialists on staff, they might be able to at least point you to other local resources that could be of assistance.

We have seen some amazing “before and after” photos of patients with thyroid eye disease, so this *is* something that can be corrected by an experienced surgeon. But the lack of insurance will likely require some additional persistence in order to find the right provider.

Take care!

[JEH]

#1182251

Laura, this past May I clocked a reading of 126 mg/dL for glucose. I understand that’s the upper limit of pre diabetes and most likely the lowest limit for type 2. I am astounded. I’m 5’9″ and probably weigh 165, not substantially overweight by any means. I also exercise regularly and take few meds, basically a statin and my synthroid. I have read, however, that excess thyroid hormone can cause elevated blood glucose and my numbers started climbing a few months after I reintroduced synthroid at the suggestion of my doc. I would be interested in hearing about your diabetes journey in tandem with Graves.

Thanks.

Jane

[Author]

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