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Experience with Second Orbital Decompression on Same Eye
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Experience with Second Orbital Decompression on Same Eye

by BPY, Mar 31, 2007 12:00AM
I have severe Graves Opthalmology.  Have been on Prednisone up and down for three months.  Cannot drive.  Optic nerve compression.  Have had endoscopic orbital decompression on both eyes within past two months.  Neuro opthalmologist is recommending second orbital decompression.  
Question: Anyone had experience with this?
Question: Anyone know my doctor, Dr. Syndee Givre-UNC Opthalmologist
Doctor's Answer

by Forum-OD-MP, Mar 31, 2007 12:00AM
someone here may respond.  good luck.  no, i dont know your doctor...
Member Comments (13)

by aimee37, Apr 01, 2007 12:00AM
Good to have a response of some kind. Thanks.

by aimee37, Apr 01, 2007 12:00AM
To: BPY
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

by aimee37, Apr 02, 2007 12:00AM
To: BPY

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?

by aimee37, Apr 02, 2007 12:00AM
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?

by aimee37, Apr 02, 2007 12:00AM
To: BPY
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

by aimee37, Apr 02, 2007 12:00AM
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.  

by aimee37, Apr 03, 2007 12:00AM
To: BPY
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