[alsha]

in reply to: OD Disappointment? #1175119

Thanks for the reply everyone!

I had a two-wall decompression along with fat removal.
I think I was at about 25mm prior to the OD and was around 19mm since the last time I was measured. A three-wall seems to be out of the question because my doctor is afraid of the possible double vision risks.

When I smile, my eyes seem to look normal, but if I don’t, my eyes look protruded and quite abnormal. I know I have to be patient, but my follow-up appointment (in February) feels so far off!
So does it really take half a year or so for all the swelling to go down?

[alsha]

in reply to: Strange or Unexpected Orbital Decompression Side Effects #1171416

Gatorgirly,
You are correct. The constipation is from anesthesia and painkillers.
As for the other side effects, I THINK that they are supposed to be short-term, but as far as I know, they can last for a pretty long time. (months to years maybe?)

Kimberly,
Thanks for the link! I find it really informative

[alsha]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170575

06291972,

I am so sorry to hear that your daughter has to go through these things as well! It really is a tough thing to deal with especially when you’re a teenager.

Yes, I have been on methimazole and levothyroxine for four years.
My endo is trying to wean me off of the medication and see if I could go into remission, however, I am having my orbital decompression soon and I didn’t want to make so many changes at once.
The reason that I’ve been on meds for so long is that my doctor says that the longer you are on medications, the better chance you have for going into remission. (Although, I’m not positive, but remission rates don’t seem extremely high.)
I have never heard that you shouldn’t be on medication for more than two years. According to my doctor, my doses are so low that it I shouldn’t be experiencing severe symptoms. (I take 10mg of methimazole everyday and between 50-100 mcg of levothyroxine everyday). Although I’m not sure if taking medication for a long time could have long term effects – MY doctor never mentioned anything – but so far the only mild side effects I’ve experienced is some weight gain (around 5-10 lbs) and some hair loss.

But of course, surgery is another option. I definitely encourage you to avoid radiation as many people warn me about the negative effects on the eyes, as you already know. I’ve talked to a couple people who’ve had thyroidectemies and it seems that their surgeries have gone fairly well without much complications. I did not opt for surgery yet because it has been hard to find time to take off and have the surgery. Also, I didn’t know if having the surgery would mess everything up again and force me to take off more time to recover and readjust.

My levels are pretty stable now, and more the most part I feel pretty good.
However, I am currently still dealing with the eye issues.
And I understand firsthand how all of this can take a toll on my psychological state as well as my social life.

If your daughter ever wants someone to talk to, shoot me a private message and I would be more than happy to share my email.
In retrospect, it would have been really nice for me if I could have talked to someone who knew exactly how I felt when I first started out.

Best of luck with everything!

[alsha]

in reply to: Just a Few Miscellaneous Questions (Food, Thyroid, OD, etc.) #1170750

Thank you everyone for the helpful posts!

I was also wondering whether most patients eventually take care of their thyroid (through surgery or radiation), or if a significant amount of people just keep on adjusting methimazole and see if they go into remission.
I know there isn’t exact data on this, but it seems to me that people usually end up killing their thyroid sooner or later, and that methimazole is just a temporary fix?

[alsha]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170572

I had always known that Graves and TED had somewhat of a separate track, so I guess I was a little confused when I heard about the thyroid advice.
But anyways thanks for clearing it up.

And yes, both of my parents have been with me from the beginning and they take me to appointments, checkups, bloodworks, etc.
I actually saw your response to another post about Dr. Douglas from Kellogg, and he is the one that I would most likely to go for my OD.
I’m also seeing another opthamalogist at the moment as well. He’s been terrific and he is very meticulous with his work. But he was the one who suggested I wait to do surgery until a later period in my life. His reasoning was not that I wasn’t physically ready for it, it was just that he didn’t want me to have to experience any risks or disappointments since I’m not at risk of losing vision. But my parents and I decided that if I were to do surgery, we would have a Kellogg doctor perform it since they have more surgical experience.

I agree that it’s great to not have to bother with the gels and ointments and vaselines anymore. But I still have to use the saran wrap every night.
I remember back when I was using the tapes, I would often wake up with bloodshot eyes. I’d pretty much lost track of the number of times my friends came up to me and asked me if I had pink eye…
Anyways, I’m just waiting for the day when I can finally go to bed without bothering with all the hassle, including saran wraps and eye drops.

[alsha]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170570

When I just started out using the saran wrap, I dabbed a small amount of vaseline/petroleum jelly along my forehead and cheeks so the stickiness would hold the saran in place on my face. I also used gel or ointment for my eyes along with the saran wrap in the very beginning.
But now, I’ve noticed that I don’t really need the gel or ointment anymore so I don’t use anything in my eyes at night. I just use a few drops of systane during the day occasionally. (Plus ointment makes my eyes really sticky and oily!)
Also, I’ve stopped using the vaseline around my face because it gets really sticky and it causes me to break out. So at the moment, the only thing I use is a single sheet of saran wrap. Its naturally stickiness usually clings to my face, and also during the night, the moisture builds up so it sticks even better. This seems to work really well for me, but then again, I guess it varies for different people.
But it’s worth giving it a try! (I’m sure it’s much cheaper than any fancy apparatuses out there)
Oh, and another thing is that since the saran wrap does such a good job of trapping in moisture for me, the moisture can build up on really humid days and make your face annoyingly wet. But to me, it’s a small price to pay for not having to deal with dry, runny eyes or painful tapes.

Another question I have is that since I still have my thyroid and I’m just maintaining it with medication (no thyroidectemy, no radiation), am I advised against having an OD while my thyroid is still active and alive?
Someone warned me that there is still a possibility that my thyroid and eyes may change if its still active and that I should have an OD after it is gone/dead. But I’m not sure if that statement is completely reliable though.

So far, everyone that I’ve read about or I’ve talked to have all seemed satisfied with their surgeries in some way or another. So I’m taking this as a good sign (hopefully)!

[alsha]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170568

I guess I’m using the term “moisture chambers” quite loosely here.
I actually just use a piece of saran wrap to cover my eyes at night and it seems to trap the moisture in quite well. I had tried taping my eyes shut for about a year, but the sticky ones always irritated my eyelids and the less sticky ones weren’t strong enough.
So I’m a bit surprised, according to your records it seems that you have undergone many surgeries already. Yet, you still need moisture goggles/tape when you sleep at night?
Does this mean your surgeries have not helped you completely close your eyes?

Also, do you think that whether a person ends up with double vision after OD is completely random. Or do people with more severe cases of proptosis or who have uneven eyes have a greater chance?

[alsha]

in reply to: Teenager/Graves Disease/Orbital Decompression #1170566

Thanks so much for both of your replies!
I’ve also been contacting other patients who’ve had the surgery done before.
It seems to me that in addition to orbital decompression surgery, most people still have to undergo many additional surgeries (strabismus, eyelid, cosmetic, etc.) This sounds like it would take a good half year to a year to fit all of these in and recover from them.

Someone actually suggested to me that if I plan on doing surgery, I should take a year off before college so I can just focus on having all of my surgery done and recovering from them.

Any opinions?

[alsha]

in reply to: Eyes do not close-need all suggestions, especially for sleep #1170231

I’ve had Graves disease for four years now and I’ve definitely had my share of painful sleeping experiences.
If you want a cheaper alternative to moisture chamber products, you could use saran wrap like I’ve done for the past few years.
Initially, I started out dabbing a small amount of petroleum gel around my face and placing a small piece of saran wrap around the eyes when I go to sleep. But I’ve found the gel to be sticky and annoying, so now I just put the saran wrap on my face without the gel and it still sticks.
This has worked surprisingly well for me. The only irritating part is that on humid nights, the saran wrap traps so much moisture that your face feels wet.
But overall, my eyes are well moisturized.
I hope this helps!

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