[tc75]

#1019404

Hi everyone!
I posted a couple weeks back about my upcoming bilateral orbital decompression surgery and Id just like to say a quick thankyou to everyone who responded and gave me thier support before I went ‘under’. I was SO incredibly terrified! But I survived!!
They were supposed to do both eyes, but when they got in there, they found my one eye was alot worse than they had anticipated, so they only ended up doing the one eye. I was told there was so much pressure from behind my eye that they had trouble keeping it down while they did the surgery. They were worried about the strain on the optic nerve, so they decided to play it safe and wait to see how the one eye healed before doing the next. I will find out this Thursday when the next one will be done. I was told it would be in a couple weeks, and thankfully so because I hate the wait. My fear of surgery is so great, I just want it over with!!!
I was so amazed about how fast the healing went. For all of you who are thinking about, or about to have the surgery done, please feel free to ask my anything at all about it! I would be more than happy to share my experience.
Thank you again for everyone who kept in contact with me before me before my surgery and shared thier stories!!
Tracy

[Ski]

#1071429

Thanks for the update, Tracy! I’m so glad this eye is healing quickly, and I’ll be hoping for the best with the second eye! It’s probably a very good thing that they focused on the situation in hand and postponed the second eye, I’d much rather have that kind of doctors myself. ” title=”Very Happy” />

[RhondaG4]

#1071430

Hi,
Got a couple of questions for you. When did your TED start and how? I just had RAI done and my eyes are red and irrateded in the mornings…no swelling yet. I had an eye specialist look at my eyes as soon as I got my GD Dx, but have also been on steroids for my headaches..post stroke 2 years ago. I was just wondering if anyone knows if there is a temporary thing maybe going on post RAI or if this is something I should jump on right away, and even if I do is there anything they can do to minimize it? Also, the steroids they have me on are a gluco kind….should I ask them to switch me to prednisone? Anyone know? Thanks Rhonda

[Kaeljia]

#1071431

RhondaG4 wrote:Hi,
Got a couple of questions for you. When did your TED start and how? I just had RAI done and my eyes are red and irrateded in the mornings…no swelling yet. I had an eye specialist look at my eyes as soon as I got my GD Dx, but have also been on steroids for my headaches..post stroke 2 years ago. I was just wondering if anyone knows if there is a temporary thing maybe going on post RAI or if this is something I should jump on right away, and even if I do is there anything they can do to minimize it? Also, the steroids they have me on are a gluco kind….should I ask them to switch me to prednisone? Anyone know? Thanks Rhonda

Rhonda,
you should be seeing an eye DR every 6 months, a specialist. NOt just an normal eye DR, I went to one because my specialist was out of town, and he told me I had no signs of Occular GD, or whatever its called. I was shocked he had the audacity to even suggest it to me.. meanwhile I"m sitting there with my eyes bugging out of my head like kermit, with my brows pushed up in that shocked expression. Oh really? HMMMM try again.
I was immediatly sent to another Dr, an Oculoplastics, Lacrimal and orbit surgeon. Now I direct all my questions to him.
K

ps, my operation was called a Bilateral orbital 3 wall decompression. gads what a mouth full… when the Anaesthesiaoligist came I had referred to him as my esthetician… lol the nurses were laughing.. oh they also placed an x inbetween my brows.. I asked if thats where they’re suppose to stop LOL.

[tc75]

#1071432

Hi again,
I had RAI done after my eyes issues started. It was actually my eyes that brought me to my doctor in the first place, before being diagnosed with Graves. I thought at first i had allergies, but couldnt figure out what i was allergic to. My eyes started to be very itchy, sore, red and I had big puffy bags under them. They didnt start to bulge for a few months after my diagnosis. It was so gradual too. About a year later was when they hit thier peak. I remember standing at the bus stop waiting to go to work, and i couldnt read the number on the buses that were coming! The double vision was really bad at that point.
I dont recall if the RAI I had done shortly after this point contributed or not to my eyes. They were already in rough shape. I have heard about a ‘cold phase’ for some TED patients, where thier eyes settle back after the thyroid is corrected, but mine never did. This was 5 years ago.
I hope this helps some!
Tracy

[vitoa420]

#1071433

HI how are you recovering? I have graves and eye problems also . Iwent to an eye specialist who siad I may need the three eye surgeries in 6 mths to a year as soon as it burns out. how long was the surgery ? Did you feel any pain? How long before you can go to work ? How is your sight ? GOD BLESS. KEEP US POSTED

[tc75]

#1071434

Hi!
I was told also that i would be having several surgeries, the first of which is the decompression, followed by the muscle adjustment and then the correction of the double vision. The latter of the two being simple in and out procedures (I wish I knew the proper names of the surgeries)

Anyway, my decompression surgery was (I wont lie) rough the first three days. That is when the swelling was at its peak and I had such bad double vision that I had to cover one eye up with a gauze pad under my glasses just so I could see. But it was short lived and SO worth it. By day 4 I was seeing fine. The pain after my surgery was almost nil! I was given tylenol 3’s to take, but I didnt feel I even needed them.

My only complaint is that it tied me up for the first two days with an ice pack, and being a mom of a 9 month and a 2 year old.. well you can imagine…. very hard to sit still with the little ones so active!!
So, aside from being tied up with and ice pack, and seeing double because of the swelling, it was not at all as bad as I had imagined. I’d only recommend cancelling anything you need to do and just relax in bed for the following couple days. Its amazing how fast the body heals. Every day there was a huge improvement.
I had my right eye done, not both, and the bruising for me was pretty severe. (Everyone is different tho) Mind you it didnt hurt at all, it just looked horrible. I was green, purple and yellow for just under a week all across the right side of my face right down to my chin! Funny how people react too… some too imbarressed to say anything but the look across thier face just says it all… and some who are just too curious to NOT ask! LOL… My poor husband wanted to make me a tshirt saying "I had surgery" so people wouldnt think he had done the damage! Aswell, I was numb along the right side of my nose. But that has been improving every day too.

Hope this helps, and please feel free to ask me anything. My husband and I took pictures of my eye the days after the surgery so feel free to ask for those too!
Take care
Tracy

[vitoa420]

#1071435

thanks for your replie . everything helps.

[Kaeljia]

#1071436

I had the surgery on both eyes back in January. The DR told me I could go back to work in 6 weeks and not to lift anything heavier than 10lbs. Okay. I was good too.. My operation took 3 hours, and I had to keep ice chilled pads on them for two days. I could not eat, I had to use a straw to drink, my mouth upper jaw was pretty much imobolized due to the freezing more like a paralysis. I still have partial paralysis on my upper outter lips. My teeth still feel weird and I still get the cold lines of freezing and hot feeling as well when I eat hot or cold food or drink. I had crusty eyes I was constantly and still have to keep clean. THese little pads under the eyes the size of a kidney bean but flatter got injured due to my rubbing my eyes when they go so itchy I couldnt stand it anymore. Eye drops, gel drops, nothing was helping. I had to keep warm and cold compresses on my eyes. I still am not driving cause my eyes are not focusing fast enough. So I guess I would have to say we are all different. I can tell you this, there seemed to be a huge feeling of freedom a release of pressure not only off my eyes, but my sinus’ my forhead and cheeks. Becareful when you wash your face, I still cannot feel my upper cheeks under neath my eyes well. I could literally pluck those fine hairs from my upper lip without tearing. So that can tell you how I lacked feeling. Becareful of biting your inner lips, they will feel swollen for a long time, mine still do, its only been recently that I’ve stopped chewing them when I eat food.
Otherwise you’ve got more information than I did. You may look bad, but may also notice a big difference in where your eyes sit in your face. I have finally noticed a big difference in the eye lids themselves. The bottom lids were tightened and the fat removed during the first operation, so my second one is only the uppre lids that need to be done now. That may be the reason for that little flap that keeps creeping up whenever my eyes are really bothering me. THE BEST THING FOR YOU AND YOUR EYES IS REST< I cannot stress this enough.. when you are tired your eyes will get worse. Try not to get angry as well cause this causes the fractures under your eyes to pinch, this is how I hurt those little pads the first time. Laughing, smiling, talking all will be different. I had aslight lisp before but its so definate now that its like listening to that women on that tv show CUPID. LOL. I kind of like it..but you can so hear the difference.
My eye did not get black and blue. I have pics I can show you of two days after the operation. Let me kknow I can show before and after.. I can show before TED, and during, then after..I guess I should do an update of what they look like today.
I hope this helps.
K

[Kaeljia]

#1071437

OH boy how could I forget… SUNGLASSES AND A BALL CAP
it is a must have… for sure after before the operation. I cannot go outside with out good dark sunglasses and a ball cap. THe light bothers my eyes pretty good. Make sure when you are coming home from the operation that the sunglasses are larger than you normally wear.

[sholt54]

#1071438

I HAD MY FIRST 3 WALL DECOMPRESSION WITH POSTERIOR ORBIT FAT REMOVAL MARCH 23–OFF TWO WEEKS FROM WORK (MRI TECHNOLOGIST AT BUSY OP CANCER CENTER OWNED BY THE HOSPITAL I WORK FOR). HAD DIPLOPIA OF THAT EYE SO COVERED IT AND USED OTHER EYE WITH A CONTACT AND READING GLASSES. ON MAY 7TH I HAD SAME DECOMPRESSION SURG ON OPPOSITE EYE AND NOW EACH HAS DOUBLE VISION UNLESS ONE EYE IS COVERED (AS I WAS TOLD TO EXPECT UNTIL BILATERAL MUSCLE SURGERY CAN TAKE PLACE)–BUT MUST WAIT MINIMUM 6 WEEKS POST OP DECOMPRESSIONS TO ALLOW ADEQUATE HEALING.
MY TRIFOCALS ARE NOT CUTTING IT BECAUSE MY EYES SIT DIFFERENT NOW AND AS I WRITE THIS MY FACE IS 4 INCHES FROM THE SCREEN–ANY SUGGESTIONS ON COPING WITH THIS IN THE MEANTIME??? WHEN I ASKED THE SURGEON’S OFFICE ALL THEY COULD SAY IS THIS IS THE FRUSTRATING STAGE AND IF MY OPTHALMOLOGIST HAD ANY SUGGESTIONS LET THEM KNOW.
PT. EDUCATION AS TO COPING MECHANISMS ETC. IS SO IMPT…ANY ADVISE.
THANKS! JUST CALL ME SALLY "MCGOO"

[braddpa]

#1071439

Hey Sally McGoo- meet your twin- Patty MCBlind as a bat!

Just read your post and wanted to let you know I feel your pain…literally.
I had orbital decompression in March and have had double vision since. I already
had pretty bad vision from my TED problems so now I go around with my glasses
and a covering over one side. I wore a patch for several weeks but I live in Fla and
it is too hot now for a patch all the time…so I have my 6 yr old grandson draw me a new "eye covering" for one side of my glasses every week. I go back the July 14th for accessment- & hopefully surgery. They were hoping this would clear up on its own I guess..no such luck.
So I am making the best of it waiting on my eye muscle surgery. Do not get me wrong it is a pain in the butt…and I get tired of the "what’s wrong with your eye?" questions…but I know this will pass and we will have the "crazy lady" pictures we took of my left eye looking off weirdly. I have actually been able to drive (carefully) and work on computer and read (large text helps.) I have found a way (don’t we all) to do just about everything…not real good maybe…but I can take prety good care of myself and manage to work. I even rode a bike last night.

Good Luck…hope you are better soon.

Patty

[megann09]

#1071440

Hello all,
I have not had the decomp surgery yet, but am sooooo looking forward to it! I’ve been dealing with this for alittle over a year now and it has really taken its toll on my self esteem. I don’t give eye contact anymore, hate to go ANYWHERE where people don’t already know me because they stare and it makes me soooo uncomfortable!! I feel like a monster. I’m embarrassed for my children to have to be seen with me, though they apparently don’t mind at all!! I just want to look normal again…is that possible? Do you look like you did before this all started? I just really have so many questions about this surgery…do most insurance co pay for it? Why have some people had to have the decomp twice? I’ll stop there for now!! Thank you all in advance. ” title=”Confused” />

[bradybunch6x1]

#1071441

I have a question about this, I myself haven’t had the Decomp done, but was wondering a bit about it. Since everyone is mentioning double vision, did any of you have it before going in to have the decomp done? I ask because I have had it for several years now, but not like most, as mine is not all the time. I don’t know that I want to have the Decomp done at this time, but it doesn’t mean I won’t at some time in the future. I get to be one of those that probably won’t just because my risk of complications are alot higher than most anyway, so I must really be uncomfertable with my looks before going threw this, either that or almost blind. So if someone could answer these questions I would appreciate it. Thanks.
Valarie

[Ski]

#1071442

Decompression surgery is complicated, and the structures around the eye are VERY precise, so it’s not uncommon for double vision issues to crop up afterward. This is why the order of surgeries is recommended to be first decompression, then muscle re-alignment, and finally lid correction.

Muscle re-alignment surgery is typically VERY successful, and far less invasive than the decompression.

Double vision can also occur when TED is active and the muscles are affected differently in each eye (very common), and sometimes can actually be partially corrected by decompression.

It’s all very individual.

Some people have decompression twice because they do it separately on each eye, and sometimes decompression must be done early on to save sight (if the optic nerve is in danger), then again after the cold phase. It depends on many, many variables.

Again, each person’s situation is radically different. Our muscles are affected differently, we recover from surgery in a different way, we choose different modes of decompression (removing different bones and different amounts of bone). That’s a very short list of the way things can vary between patients.

[Author]

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