[artbytr]

#1018649

That may sound crazy but..YEE HAW!!! I have waited about 2 yrs for my eyes to settle down,2 long yrs… April 1st ! I’m nervous and excited, wow just a mix of emotions but good ones . I’ve had a rough time but I have a good sense of humor and reading everyone’s stories on here helps so much! So I wanted to share, they said 4 weeks after this one they will then do the muscle surgery and they think they can correct the dbl vision! amazing, some one else wrote it already but I have to repeat it. How lucky are we to be living in this day and time with all these available meds and surgeries and options.
And to anyone just starting this roller coaster ride, remember there are good days ,bad days . ok days etc, but as long as we laugh we can get through it! And I truly believe we are NEVER given more than we can handle so that alone should tell us how strong we are to begin with! and to any of my family that may read this THANK you for always being there. I"ll keep you posted and I will be doing be for, during and after photo’s and I will share them with anyone who would like to see. I found it helpful looking at others I kind of know what to expect. I’ll keep you posted

[Kimberly]

#1066223

Congrats – this must be a huge relief after two years! You have a great attitude…and it sounds like you have a wonderful support system. I’m sure this has carried you through the difficult times. Please do keep us posted!

[snelsen]

#1066224

I am soooo happy for you. My OD was five weeks ago. I looked better immediately, my eye was not bulging out of my head. It was great. The two things that helped a lot were having the head of the bed elevated, and using ice pack. I had OD because there was pressure on my optic nerve. I am probably still in the hot phase. I sure hope I get to the cold phase pretty soon. IT’s been a year since diagnosis, but my declining vision was attributed to "needing new glasses" for far too long. Tearing, dry eyes, diplopia are what I am having now, and I am so happy that you will be done with all of this soon. Strabismus surgery is something that I will celebrate when it is time to do it.
Please write again of you have any other questions @ OD. I spent a lot of energy being very apprehensive, and it was energy wasted!!
Shirey

[sutan351]

#1066225

I really look forward to your comments – post OD. I am entering my 4th year of Graves/TED and deciding whether or not to proceed with OD. It will be for ‘cosmetic’ reasons (which isn’t truly just cosmetic in our case), not optic nerve issues. The risks are still swirling in my head, but my heart keeps telling me to proceed. This plus a daily look in the mirror. I know my eyes look better now that I’m in the ‘cold’ phase – as everyone tells me…..but there is still significant proptosis. The option of simply doing lid surgery seems like it would just take my lid over a still ‘popped out’ eye. Anyway this would be my first surgery. I do have double vision – but much less than a few years ago and it’s double I can live with. I hope OD doesn’t make it any worse.

Look forward to your post OD posts!

Sandy

[Ski]

#1066226

OD is more commonly used for repair, in the cold phase, than for optic nerve compression in the hot phase ~ just so you know it’s not all that rare, and it is absolutely NOT cosmetic. I know it feels as if it’s vanity driving the decision, but there are so many other considerations involved, not the least of which is simply the safety of the cornea. Our eyes should not be so exposed.

And if what you really, truly need is OD (for proptosis), fixing the lid is bound to be a disappointment ~ plus it could make it more difficult to do the right thing later. Any issues created by the OD can easily be solved with strabismus surgery afterward, but the surgeons are getting more and more experience with this, so the risks of additional difficulty are definitely minimized.

[sutan351]

#1066227

Thanks Ski – This site has been SO Helpful and I really appreciate your comments!!!!

I booked a surgery date today for 4/28/10 and feel ‘in my heart’ that it’s the RIGHT decision. It’s been a long road for me to come to this decision and I’m sure I’ll have lots of butterflies and doubts up until the surgery date. It’s a leap of faith in some way because I’ve read many of the posts -mostly positive, but some highlighting the risks of this surgery.

It’s been confusing to get such a variety of opinions from different Neuro Opthamologists that I’ve seen – 4 to be exact. I finally determined like any industry – some Drs. are more comfortable with this surgery and the one I picked has the expertise I desire. It does seem like the surgery has become more common. I feel comfortable with this Dr. and really appreciated all the before and after pics he showed. After seeing pics of my eyes on his computer screen, I said ‘WOW – I am definitely a Before’ pic! It made the need for the surgery even more evident.

Even my cousin (who is an Eye Surgeon – mostly cataracts) suggested I simply wear my glasses because it’s not that bad. My proptosis – by the way is in the 20+mm range! At the end of the day, we all have to make difficult decisions, weigh the pros and cons and move forward with what’s right for us. I’m putting these words in writing so I can reread them as I move closer to my surgery date to RECONFIRM MY DECISION!

Thanks again for your feedback…I’ll keep you posted and keep reading all the good feedback on OD from others. On a side note – I have been Hypo since Sept 09 after RAI in Apr 09 and FINALLY starting to feel stronger and more normal….just this week. My goal is to eat well, exercise and get in a good mental state prior to my surgery date.

[snelsen]

#1066228

Hi, thank you for your thoughts. I get so discouraged waiting for the COLD phase. I do think you will sail through your OD>
As I said before, elevation and ice worked for me. I wanted to say one more thing about elevating the head of the bed.
I ended up not using the blocks I bought to raise the head, for I was not sure if the wood legs at the foot of the bed would take the pressure. Instead, I fold numerous quilts and comforters, plus some extra pillows, and put them under the mattress. I actually liked this a lot, for I could decrease the elevation, but still have HOB (head of bed) up a little bit. I got my blocks at Bed, Bath and Beyond in Seattle. You can buy them separately. BBBeyond has ice packs that are "soft" the feel like fabric on the outside. I liked them much better that the plastic ones without the soft feel on the outside.
I don’t know what your surgeon will say for post op instructions, but I was supposed to "massage my eye for 15 seconds five times a day."
I know how you feel about making decisions! I think you will be very pleased with yours, and this limbo we live in is very difficult.dat
Wow. FOUR YEARS! I can’t imagine three more years of TED. But I better include it in my thinking, just in case. Did you know you were in the cold phase because your measurements and vision did not change? I am a little unsure how that is decided.
Shirley

[Author]

Posts