orbital decompression due to thyroid

[linriv7]

Has anyone had orbital decompression due to bulging of eyes.  Ihave a thyroid problem and my doctor offered to conduct this surgery.  I am concerned and dont know if i should be so dramatic about it.  I would like to know if someone has underwent this surgery and if so, how did it go, was it worth it, did they benefit much from it, cost of the surgery and if it was painful?  Thanx! Any info would be helpful.

[leslie2]

A related discussion, terrified was started.

[hula22]

A related discussion, orbital decompression was started.

[MaryM75]

A related discussion, Orbital Decompression was started.

[queenone]

A related discussion, Orbital Decompression was started.

[momwithgraves]

A related discussion, Decompression surgery was started.

[Jaks69]

I am having Orbital Decompression surgery done in May by
Dr. Nancy Tucker. She works through Ingalls Hospital and University of Chicago Hospital. 773-702-3937

Any advice from someone that has already had it done?

Good Luck,

Tricia

[silverb44]

Hi I have bulging eyes caused from graves disease.  I am thinking of doing some type of eye surgery, does anyone recommend a specialist in the chicago land area?

[vudoggie]

Trixie??? How did it go?? Would have hoped to see you back on here by now.

[stoptears]

Trixie, I am interested to know how your surgery went, as it sounds like your case is not that different from mine.  I have been dealing with the eye effects of Graves for a few years now and my doctor finally feels my condition has stabilized to the point that an orbital decompression would make sense.  I'm in the Boston area and my doctor is Mami Iwamoto.  Does anyone else on this board know of her or receive treatment from her?

[vudoggie]

Ok I just went to your website link and yes I think we are both right. without one you can not have the other this  was on the women's health network:
What is Graves

[vudoggie]

guess I am just as confused the second time around as I was the first time. I have a very hard time understanding how what is going on with my eyes can be from the original "graves" since they surgically removed my thyroid over 10 years ago.
I went back to the doctor Yesterday and now have developed cornea ulcers! He said this was caused from exposure and possibly a scratch that has gotten infected. But the  good news was that my eye pressure was only 19 and 20. I get so confused by it all just never dreamed I would be going thru this again. Somewhere along the line I was under the impression  that Graves' only lasted about 10 years and so not ready to face it a second 10.  Thanks for leaving me a place to vent and good luck to all of you going thru it.

[vudoggie]

She said that she thought my immune system had weakened with all the trauma of trying to find the reason for the hip pain, after fighting "torn cartledge" for 2 years they finally did a hip replacement. Was a very stressfull time.  I have been told Grave's affects thyroid and is not a cause of thyroid. so without a thyroid gland it attacked the eyes again. and deeper sockets or not my eyes are protruding again to the point they do not stay closed at night again. Therfore scratches, dry spots, and the whole batch of problems again.  My eye doctor wants me to go and get the decompression surgery again  so maybe will not have to have the eyelids fixed a scond time.  I dunno what I am going to do will find out more with my appointment on Thursday.

[trixie1127]

"I have been told Grave's affects thyroid and is not a cause of thyroid. so without a thyroid gland it attacked the eyes again."

Hm-m... I hate to contradict your doctor, but the American Thyroid Association states otherwise: "Graves’ disease, a type of hyperthyroidism, is caused by a generalized overactivity of the entire thyroid gland." I hope it is not inappropriate to post links on this forum: http://www.thyroid.org/patients/brochures/Graves_brochure.pdf

This PDF brochure also addresses Graves-related eye issues.

[trixie1127]

Well, Dr. Della Rocca did mention that he'll be doing mine very conservatively, which means if he underdoes it rather than overdoes it, I might need another one, I suppose. Yes, I think I've heard of it done again, although, logically, if one of the points of this surgery is to deepen your eye sockets to make your eyes fall deeper in, they can't get as bulgy and exposed again as before any surgery at all, can they?

I'd be more concerned about the return of your Graves', especially since you say you don't even have the gland anymore. Where did it come from, if you don't have the thyroid anymore? What about your other symptoms? What does your endocrinologist say?

[vudoggie]

I had this surgery about 10 years ago and have never regreted it a day, However after fighting with a hip problem and the stress from it suddenly Grave's has reared it's ugly head again!  I was not aware it could return after all these years but it has and my pressures are up double vision has returned and eyes are tearing non stop. I can not look up or from side to side without extreme pain and awful vision, and I do  not even have a thyroid gland anymore! my Opthomalogist feels a second decompression surgery is in order, Have you ever heard of having to have it done a second time?

[trixie1127]

I'm scheduled for an orbital decompression surgery with Dr. Della Rocca in the New York Eye & Ear Infirmary this Friday morning. I know he's one of the very few specialists in the country who do this, and he prepped me very thoroughly on what to expect -- i.e., bruising for the first week, which should then start fading rapidly and disappear over the course of 3-4 weeks, with no loss of vision. They'll keep me overnight just in case there's an infection or excessive bleeding, so they can take care of it right away.

My right eye is more bulged than my left, so they're starting with it to try to match them both, so I might need anywhere from 1 to 4 surgeries, he said, if they need to adjust both eyes some more. I t have no double-vision problems, just typical for Graves' (although not the worst-looking case) bulging, with dryness and watering, especially in winter.

So, this is what Dr. Della Rocca told me is his plan. I'm actually with David Della Rocca, the famous Robert Della Rocca's son, but Robert has been stopping by to check up on us whenever we were discussing my eyes. I don't know which one of them will be operating on me, but I have a good rapport with David, and I trust him.

I'll post my experiences here after the surgery. Wish me luck. I'm not too afraid, but still, a little bit.

[itsoktodream]

Hi I live in England, im 50 yrs old and am having eye decompression surgery on Monday 30th Jan 2006. Ive bin reading the comments on here and find them very encouraging, thanx to all... unfortunately i have to have one eye done at a time and obviously very nervous regarding the look as ive already had eyelid surgery which has led to the lids not closing at night and use of nightly ointments to combat drying of the eyes. my better looking eye will be done first and the other one a couple of months later... is this usual, i wish i could have the two done together... well i will let you all know how it goes, fingers crossed ay? haha

[NURSELPN]

I am also a graves patient who has GED. I am scheduled to see an eye specialist on 01-23. You might get a better response from the forum Dr if you post your question on the current date above. They usually answer the questions right away. but if he doesn't look back through the old threads he won't even see yours. I'm from Mi. I just starting with this process myself. I know how you feel apprehensive & confused.  Good Luck & God Bless You!

[bigbrowniis]

I also have graves disease of the eye and am in the process of finding a doctor also in the New York area.  The one dr. I was recommened to by several other doctors (Dr. Warren in NYC) does not accept my GHI insurance.  I have also seen a dr. in staten Island which is recommended but I must say I was not the most comforatble with either.  Eyes are very protruding.  right eye at about a 28, which is very big and so scary looking. Left eye about 25 i think.  So scared to have procdure done and then the after affects but i cant close my eyes at night, always tearing, the stary look, people look at me like I am an alien. The person seeing Dr. Dellarusso, is he a graves specialist too.  Any insight will be helpful and supportive.

[Jen28546]

Hello I just received and orbital decompression on 11/10/05 and nothing could prepare me for the aftermath.  I had severe propotsis in only my left eye.  I finally found someone within 500 miles who could perform the surgery after 2 years of getting the run around from my regular eye doctor.  My 1.5 hour surgery took 5.0 hours.  The pain afterwards was excrueating for about 3 days (alot of pressure).  On the fourth day I felt great but I wasn't quite normal.  I took 3 weeks before I could drive.  I have slight double vision  but not enough to undergo another surgery at least for now.  I still have alot of lower lid swelling which occured 2 weeks after the fact.  But the compliments I have received after the getting the surgery and the fact that I can see as good as I did prior to getting the proptosis was well worth the pain and agony of post surgery.  Just make sure thet your doctor has alot of photos of their previous work for you to look at.   I have no scaring and look 99% as good as I did prior to the propotsis.

My MD is Frank H. Christensen in Chapel Hill NC.  Truely a good MD.  My out of pocket cost was about $5,000.  Insurance paid for the rest.  Check your ins, mine has a clause that stated it wwuld pay for any cosmetic and/or reconstructive surgery due to illness or disease.  (DUH Graves eye disease)

[linriv7]

Hi, well, I went to my eye doctor today and he told me that he doesnt want to do surgery at this time.  he says that i'm doing really well and that my condition is stable therefore, he doesnt want to perform surgery and then my thyroid levels go crazy again.  He said that it's a matter of time and that eventually he will do surgery but not now because it's not necessary.  So, I guess the outcome is that I just have to be patient and hope that my eyes either get better and if they don't then hopefully the surgery can get done.  Thank you so much again for your help.

[Eye Guy]

I would listen to his advice.  I was with Dr Weiss here in Chicago for another surgical case and I told him about your case.  He said he really likes Dr Della Rocca, and you are in the best of hands.  I'm sure he will do right by you when the time comes.

Good luck.

[linriv7]

That is soo funny.  My doctor is Dr. Della Rocca.  Wow, then that means I'm in good hands!!!!  Thank you so much.  You've been extremely helpful!  I'll keep you posted and how things work out after my appt next thursday.  :0)

[Eye Guy]

Hi,

here are the doctors that would be recommended by an oculoplastic specialist here in Chicago.  If you decide to see any of them for a consult, please mention that Dr. Robert Weiss referred you.  I have been with Dr Weiss in surgery, and he is very proficient at what he does.  I trust his opinion for you.

Dr.Robert Della Rocca at New York Eye and Ear Hospital (not New York University)
Dr. Michael Kazem (?sp) at Columbia University
Dr. Kip Dolphin at Cornell-New York Hospital

All are good guys with a great deal of thyroid eye ds management experience

Good luck to you.