I have Grave Disease. Everything seemed all right after 6 years, but they didn't want me on Tapisol.  Had the radioactive iodine pill, my numbers are not right yet and about a month ago didn't understand what was going on with my eyes.

I just lost my job in January, got a new one in Fedruary, and soon after driving was horrible.  Now its with my computer and looking at people.  

I am out of work right now, waiting on disability.  I cry all the time.  I have seen a optomologist who is suppose to be one of the best thyroid eye drs.  He has me doing eye excersises.  Going back on Friday, I am thinking of steroids, cuase my endroconologist suggested them because they are suppose to be helpful.  I don't know what to do. Now I am reading about surgery.  I don't know how any one can work.  My reports are so small. Maybe its also really stressful because I am just learning it.

I know I mentioned I cry all the time now and try to talk to your firends and children they really don't understand.

I feel so lonely and scared and don't know what to do. I don't really understand everything thats going on.

I posted something yesterday but don't understand this sight and don't know how to get back to my first question and now I am afraid I am going to lose this forum also.  Help me to understand how to get back here incase someone answers me.

Thank You,
feeling alone

Second orbital decompression on left eye on April 30.  Back on 40 mg of prednisone.  I still have optical nerve compression and now a central scetoma.  My opth thinks that it is worth the surgery to see if they can help the vision.  Riding bus to work.  Will let you know.  Best of luck to you.

BPY,

I'm sorry I haven't gotten back to you before now but I've not been feeling too well. I have been limiting my
computer use due to intermittent pain behind my eyes.
I see my eye doctor the day after tomorrow.

If I remember right, you have an appointment coming up within the next week too. Let me know how it goes, ok.

TJ

They did onr eye st a time.  Rt in February as the left one was not pressing on the optic nerve, then it went down hill-pressing on the optic nerve and they did the left on March 6.  Now it is pressing AGAIN on optic nerve on right.  Holding on until visit on April 12.

Don't know how long this forum will let you comment until they move you to archives!  Hope they let me post until after April 12.

Can you drive now?  Can you see okay?  Do your eyes look normal?

Oh sorr, loking back I see it's been 2 months since thedid the rt. eye. Even at that, I would think, you would still have some swelling

I had radioactive iodine too  in 2005 & when my TSH skyrocketed at 89 my eye disease acted up. Looking back I had signs of it even before my Graves was diagnosed but The grittiness, aching & bulging started about 2 months after the RAI treatment.

Did they do both eyes at once on your first decompression?  If that was only a month ago seems like you would still have quite a bit of post-op swelling. Which eye do they want to do the second decompression on?

Yes, I have Graves Disease diagnosed four years ago.  They did radioactive iodine.  Getting the levels stable have been a challenge. I stressed alot about getting the eye disease and my physician always said -if you haven't had it by now, you probably want get it!  Ha!

I am 58 and am a non-profit Executive Director.  I have great staff so with low vision aids on the computer I am managing, but it is stressful.  

They did the deviated septum surgery at the same time they did the orbital decompression so I did not have to be under but once for the left eye. The surgery was not bad at all-sore afterwards, but really no big deal.  The jury is not out on better breathing.  It has only been a month and still seems stuffy-also a mouth breather.

I am trying to avoid disability as I need the income.  Ironically, my agency serves older adults and people with diabilities and our main program is escorted door to door transportation!  So I am now somewhat of a poster child!

My pressures have been normal, but you are right in that I was treated as an emergency.  I had a CAT one evening at 6 and was a walk in at UNC the next morning with surgery within a week.  One month later another surgery.  I go back April 12 and expect the same treatment.  They are doing all they can do.  

Changes your life, huh?  It is so unusual that not many people can identify.

This is indeed therapeutic for me as I have NEVER done a forum.

Hi!...Back again...

No, I never had radiation to my eye muscles.
My opthalmologist referred me to my neuro-
opthalmologist...I guess his group is one of the top in Mi & does alot of teaching seminars. To me it is also a plus that he is a specialist in facial plastic surgery too. He's from Spain & even though I'm 55 he's pretty good looking too {:-) LOL. They did my surgery due to excessive bulging & high IOP. Nothing was really said about the optic nerve, but I think, seeing I'm 3 hrs from my surgeron he decided to do the surgery before an emergency hit. I guess once the optic nerve is affected you don't have much time to reverse it. I have been very fortunate as I have had excellent eye doctors.

It sounds like your very fortunate to have  your specialist.  She should know what she's doing. I know how frightening it can be.

This is too weird, I also have a deviated septum on the rt. with a 70% blockage. They would not do the surgery on that with my eye surgery. The ENT said I'd need to come back for that one. I hear it's a pretty bad surgery....How was it? Maybe I don't want to know!
LOL  I've always been a mouth breather & it would be great to be able to breath thru my nose.

I don't know how your working thru all of this. Doesn't your eyes limit your activity alot? I couldn't even tolerate lights. Let alone the double vision. What do you do for a living? Do you have thyroid disease too & if so what kind of treatment did you have to control that.?

As you can see I am a nurse & have been one for about 28 years. My family physican took me off work when I was diagnosed with Graves disease. I ignored my symptoms til I couldn't function anymore & I was quite ill by the time I was diagnosed.  I haven't returned to work yet. I also have B-12 deficiency & have alot residual effects from that so my family physican put me on permanent disability. He's been through alot with me the past 3 1/2 years. I don't know if I'm happy about not working or not but I could never work an eight to twelve hour shift. I'm just going to see how things go right now.

When do they plan on doing your next surgery?

TJ

Yes. They did the right eye first and then the second eye a month later.  I had to havc deviated septum surgery at the same time with the second.  I was told that they were very concervative.  I am really somwwhat scared of the second orbital as I am told the closer they get to the optic nerve - the riskier.  

When you had your surgery was it for protruding eyes or was it because it you had optic nerve compression?  My diease went from 0 to 100 in a matter of months.  The thought of dealing with this for three years is pretty depressing.  

Did they ever consider radiation therapy for you?  

How did you find your doctor?  I am told that mine is one of three in the country in her specialty, but with this disease you want to be with the best.

Again, talking to someone who has been there is great.  I certainly have never known anyone and I have lived over 50 yrars! This is also the first time I have done one of these forums.  

Hi BPY,

I'm glad it helped. Like I said, There's no one who understands like someone who is wearing the same shoes.

My neuro-opthalmologist is from Southfield, Mi.. I really like him. He answers questions & explains what he plans to do.

I take it they did a medial decompression on you the first time because you mentioned the did it using the endoscopic method. Was that the nasal approch?

TJ

Whoa, big thank you to TJ/  I had not talked to anyone that has gone through this.  It made me feel like I have a friend.  

I can't believe you could not drive for three years!  I guess I had better prepare for the long haul.  I am still working and getting rides to work 25 miles away!  Have to to survive.

I am anxious to get off the Prednisone as it makes me crazy and fat much less the side effects.

I go back April 12 for what to do next.  I feel better knowing someone had the second orbita; decompression.  I also have the double vision,etc

My disease is still active, but they are trying to save my sight.

Did you see a doctor in North Carolina?

Sorry for the typing errors...that's what happens when I type in the dark. It's hunt & peck. If I knew about computers back in high school I would have paid more attention in typing...LOL. The double vision looking when looking down doesn't help much either :-) You understand...don't you?

Hi BPY,

Well, you've found someone...me!

My second decompression was 6 months after the first. Both of my eyes were affected but the rt. was much worse than the lt.. During my 1st decompression they did the medial (toward the nose) & the floor of the orbit, A ENT did the nasal approch for the medial & a neuro-opthalmologist also a plastic surgeron) did the floor. I took 5 days of Prednisone after the surgery & eye ointment. 6 months later (the neuro opthalmologist) the lateral wall & during the same surgery he lowered my upper lid. He gave me Decadron (steroid) IV for 24hrs after the surgery then another eye ointment. On my first check up he gave me another medrol dosepak. 2mos. after my last decompression my IOP was 20 down from 30 pre surgeries.

I haven't driven much for the past 3 years either until this year in December of last year I had eye muscle surgery & even though my vision isn't perfect I can see without prisms on my glasses or one eye closed.
I still have double vision when looking way up, way down, or to the right. But I'm thankful for what I have in straight vision & I'm told if it bothers me too much I can have another corrective surgery (chance of over correction) or prisms put into my lens  I am learning to turn my head instead. I also had a bout with ptosis (drooping eyelid) in the opposite eye which I also had repaired in December last year.

This disease is so mind & body altering that no one can conceive it.
My second surgery was no worse physically than the first & I'm not sorry I had it. Perhaps it may have been a little easier because by then I trusted my surgeron & knew what to expect.

One year poat op from my first decompression my eye looks normal except the lower lid droops & my vision is functional. It's certainally more than I had a year ago. Thank God!!! I am scheduled to have my rt. lower lid corrected in April...I can't wait.

If I read correctly you are from North Carolina????
I am from Mi....A Neuro Opthamologist is what you want & one from a University is no novice. It's worth it for you to get off the steriods, too. They are wonderful meds but have terrible side effects when taken long term, as I'm sure you know.
Keep your thyroid levels good too. That's very important.

Well I've probably told you more than you asked. If you have anymore questions I'll check in because I know how scarey this can be.

God Bless You, TJ

Good to have a response of some kind. Thanks.

someone here may respond.  good luck.  no, i dont know your doctor...