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Orbital Decompression Surgery
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Orbital Decompression Surgery

I had an orbital decompression surgery almost a month ago.  The surgery went for over 4 hours.  I feel terrible, a lot of pressure, eyes very congested, very gritty as if they are about to explode.  I wonder if other patients suffer the same symtons as long as I do and how long does it take to feel normal again.
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Why did you have orbital decompression surgery? The most common reason is over-active thyroid (Grave's Disease) induced exophthalmos (bugged eyed or bulging).  If you have Graves orbital disease it more likely your symptoms are Graves Ophthalmopathy than due to the surgery. In any case you need to talk to your surgeon in the near future about your ongoing problems.

JCH III MD
21 Comments
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Thank you for responding.  Yes, I am suffering from Graves Disease complicated by orbitopathy.  My vision has become so bad that my doctor needs to do a decompression surgery to save my optic nerve from being further compressed.  I just don't understand why I have so much pressure feeling/congestion in my eyes after the surgery.  
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Often, in addition to the eyes pushing out of the socket, there is also lid retraction - lids pulling back so they don't close all the way.  Until the lid retraction is corrected, there can continue to be the dry gritty feeling because more of the cornea is exposed to the elements than normal.

I had bilateral decompression for Graves Disease in March, and am waiting for surgery to repair upper lid retraction in both eyes.  Unfortunately, the decompression involved the floor of my eye socket and now I am dealing with a maxilary sinus infection, which is delaying the eye surgery.

I understand your wanting to feel normal again.  I cannot wait for the day when I don't have to carry eye drops everywhere I go!  

Good luck to you.
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233488_tn?1310696703
To poorted   You had the surgery because you eye societ was so full of swollen tissue from the Graves Disease that it threatened to blind you. It's still "full" it's the fullness or pressure that shoves the excess tissue into your sinus' instead of strangulating the optic nerve.

You will probably also need to continue frequent artifical tears and a lubricating gel or ointment at bedtime.

JCH III MD
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I saw my doc again today.  She wanted me to do another TSI blood test and a CT Scan to see how my inflammed muscle is doing in the newly expanded room behind my eyes which I believe is causing all the pressure/pain.   My TSI test in March 07 is 5.7, trending down to 4.3 in July 07.
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233488_tn?1310696703
Thanks for the follow up. Good luck to you.  
JCH III MD
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Hi, I had orbital decompression surgery for graves (mild double vision/pain/slight lid retraction) in left eye 2 wks ago.  A few days after the surgery I was admitted for cellulitis.  A CT scan showed a blod clot traveled from the nasal cavitity to the orbit which is what caused the infection.  I am now home recovering.  I feel like half of my face has been  hit with a bat.  I have severe numbness from from the front of my teeth, up along the cheek & into & around the eye socket.  I feel like I have tunnel vision in my left eye now & at times do not have control over the movement of the eye.  I feel incredible pressure....not pain....just this incredible pressure on half my face.  I am so scared that this is permanent.  Can anyone tell me if this numbness will go away and if so how long am I looking at? I am scheduled to have my other eye done in less than 2 wks & I don't know how this is possible with feeling this bad right now.  I asked my doctor & he said he "forgot" to tell me that the numbness was a "risk" & could take up to 2 months to go away.  Thank you very much
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233488_tn?1310696703
Hello Jordies5  sounds like a rough go. Numbness below the eye and along the lower eyelid and cheek is part of orbital surgery and is considered nornal and does normally improve with time. You however have had a complication and your recovery is not normal. You will need to continue to ask you orbital ophthalmic surgeon detailed questions.

If any readers have had orbital decompression surgery they are urged to report here to helpp poorted and Jordie5.

JCH III MD  Eye Physician & Surgeon
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Avatar_f_tn
Hi to the two of you,

I also have TED & have had two decompressions 03/06 & 07/06, strabismus (eye muscle) surgery 12/06 & one corrective lid surgery 06/07 & I am due for another next month. These were all on my rt. eye.  I've also had ptosis surgery 12/06 on the lt upper lid (that one is for a drooping lid) which I understand sometimes happens on the unaffected eye. As you know, this disease physically & emotionally draining. Graves or Graves eye disease isn't anything I'd wish on anyone & it's a long drawn out ordeal with one surgery after another.  I didn't even want to be seen in public before my surgeries. Now my eye is back in place & next month I'm having what I hope to be my last surgery to correct my lid position on my Rt. eye. But as my neuro ophthalmologist (surgeron) says TED is unpredictable & can return.

Hi poorted,

I also experienced alot of pressure behind my eye with both decompressions & my neuro-eye surgeron gave me a medrol dose pak, which is short term steriods to combat it & it helped alot.  It helps with the inflamation (inflammation) which occurs after the surgery. And also ICE, ICE, ICE...it's a life saver. The pressure slowly goes away. Nothing with this disease happens overnight that's for sure.


Hi JORDIE5,

This surgery is bad enough without all the extra you've been through. I'm sorry to hear about all the complications :-(  It's a good thing your surgeron was right on top of things.

Unforutately, the numbness is normal. Some have more than others. I even had facial drooping after my last surgery which lasted for about 48 hours & slowly faded away. Like I said above my last surgery was in June & my face is still numb. The numbness started in my mouth extending up into my cheek & around my eye but now it's just below at the ouside of my eye & at the incision line. Also you may have some vision changes...I did & it also improved when the swelling subsided.

I can't comment on having one eye done than 4 wks. later having the other. I do know that you feel like you were hit with a Mack truck afterward & I guess I don't know why your doctor didn't do both of them at one time instead of waiting. But that is a judgement call that I can't second guess.

As the swelling goes down don't be surprised if your double vision worsens but they can use temporary prisms on your glasses which help.  Then eventually you will have eye muscle surgery which will alleviate most of it.

Decompressions first than strasmius surgery than lid correction. A person begins to feel like a hypochondriac after awhile. I wished it was a dream but it's more like a nightmare isn't it???

I hope I helped,
God Bless & the best to both of you,
Jean

PS Don't be afraid to call your surgeron when you have a question, ok.
That's what he's there for & you may need an extra visit or an additional medication. Remember there's no stupid question.
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233488_tn?1310696703
Thank you for sharing your experience. Hopefully the final result will be worth all the long ordeal of surgery.

JCH III MD Eye Physician & Surgeon
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Hi everyone.  Thank you for all the info.  I really appreciate it.  I was told they do one eye at a time in case the surgery leaves you blind.  I saw the doctor today.  He said the numbness in the face occurs from over manipulating a nerve in that area during the surgery.  He advised me that it should be temp. situtation but no guarantees that it's not permanent.  I asked about physical therapy & he said that he has not heard of anything out there due to it being a sensory nerve & not a muscle nerve.  A little disappointing.....was hoping to help the numbness along a little faster but ironically today I actually feel a little better in that area....a small sign of hope.  I asked him why I get dizzy & sick to my stomach when I walk.  He stated it was due to the eyes not being in line with each other & the feeling will most likely not go away until I get the other eye done.  So today I had to make the awful decision to go ahead with the surgery for the 2nd eye even though I still feel horrible.  I pushed it off until 9/18 which still gives me two weeks.  For this surgery the doctor claims that he will not remove the bottom of the orbit floor like he did for the first one.  This should minimize damaging the nerve that caused the numbness in the left side of my face.  My husband asked him....then why did you do this for the first surgery? and the response was "it's just a standard proceedure that we do but the results will be the same".  Obviously, the comment is a little concerning but he really is a nice doctor & even though there were complications...I still trust him & believe it was just a freak thing that happened.  I knew the risk going into it but you just don't think it's going to happen to you.  He claims I am his first full blown cellulitis case that he has ever had....lucky me, lol.  I have just two more question if someone wouldn't mind answering them when they have a chance.  1). Is it normal to feel like your eye has "things" in it....feels like sand, grit when I blink......after the surgery? I forgot to ask my doctor today about this.  I bought eye drops which help for awhile but it just comes back. It kind of feels like my eye is exposed more to the air....is this due to not having the lid surgery yet and maybe the lid isn't closing right?  2). Did the lid surgery really make a difference afterwards in the appearance? I only ask this because right now I feel like I have one normal eye & then this "new" eye that is now kind of buldging a bit.  I didn't have this before the surgery.  Like I had mentioned before I had to originally have this surgery because of high pressure, pain & double vision.  Now I look like a grave's patient.  I hope I didn't over whelm you with all this info & if I did....I'm sorry.  Thanks again for the support!
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Hi Poorted, are you feeling any better? I'm still having problems in the left eye.  I'm almost 4 wks post surgery.  Numbness is mild now but still bad in the lip area. I can live with this. My biggest problem is still  having pain in the eye & the constant feeling that I have stuff in my eye.  I've been back to the doctor again this wk (2 hrs away) & he's clueless now.  He thinks it might be tissue swelling/another type of infection "behind" the eyes so he put me back on steroids & an antibotics & canceled the surgery for my right eye.  I can't stand this feeling because it's constant & eye drops don't make it better.  My doctor said nothing about eye lid surgery correcting the "gritty" feeling & I asked...he said it's just a "sensation".  The day after I started taking the antibotic (antibiotic) I got really sick (too strong...Augumentine 500 mg) & he told me to stop taking it.  I assumed he was going to call in a lower dose but he didn't??? what happened to the infection theory...right? and he never called me back to follow-up with me like he said he would.  I'm so frustrated. I called every eye specialist in the surrounding two states for a 2nd opinion & the soonest date I could get was Sept 25th (which I thought was great....but seems like a life time when you're in pain).  I used the excused that I live so far away from my doctor to obtain my current medical records...saying I needed them in case I needed to go to the local ER.  That way I don't go empty handed to the new doctor.  Please let me know how you're doing.  I really do hope you are getting better :-)  and thank you!
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Hi, still in really bad shape.  I obtained the CT report today.  Impression: Postoperative changes status post left inferior orbital decompression with a small bony fragment displaced superiorly which mildly displaces inferior rectus muscle.  

My doctor note: CT revealed the postsurgical changes & celluitis but no more catastrophic findings.  

Left side of my eye has sharp pain, the entire eye socket is numb, contant blinking, pain, dizziness, feel like I have something in my eye all the time.    

Is the CT scan indicating that there is a bone stuck in my eye?  My doctor has made no mention of this & I just rec'd the report today.  I no you can't give out medical advise but is there any info on what the CT finding is indicating? I am desperate to find out what is wrong with my eye.  My doctor said the problem is from the sensory nerve being damaged & he's not sure how long it (if it will ever) will take to recover.   Thank you
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233488_tn?1310696703
The CT report does not mean that the bone fragment in poking into your eye. It's rubbing on the eye muscle that moves the eye downward. This often does not cause trouble with eye movements. If you are having double vision when you look down you can ask your surgeon about the fragment as a cause. If you are not having double vision it likely isn't a problem.

JCH III MD
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Thank you so much for writing back.  yes, I have double when looking down & up.  Very mild to the sides & basically none looking straight ahead.  If I move my eyes up, down & side to side..... I become disoriented & very dizzy (like the room is spinning).  I called the doctor & asked him about the bone finding but he said the radiologist didn't know that it's part of the post surgery findings & is considered normal.  He said there is no bone in my eye.  Should I let this go or see another doctor about this?  Thanks again.  
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233488_tn?1310696703
The surgery you've had done is difficult and recovery slow. You might discuss with your orbital surgeon if he/she thinks consulting a strabismus/eye muscle specialist in the near future would be indicated.

Ultimately if the double vision doesn't clear you're going to need to see a strabismus specialist anyway.

JCH III MD
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Thank you....I will discuss this with option with him.  I guess it sounds like it really is just a waiting game now & that I have to accept that the infection complicated/delayed things further.  I appreciate all the help that I have received from you & the others.  Take care.  
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hi i had an orbital eye decompression is it still possible for ur eyes to bulg out after THE SURGERY???? also my left eye lid became droopy 8months after my surgery and my right eye is beging to feel dry again i hope its not happening agian??? MY RIGHT  EYE LOOK MOGE BULG THAN THE LEFT AND THE LEFT EYE FEELS ERITATED
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is it still posibile for ur eyes to bulg out after orbital decompresion i had surgery on both eyes every thing went will fot 8 months and the my left eye lid started drooping down and my right eyeis starting to feel dry like before the surgery could it be possible that its starting to happen again????
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233488_tn?1310696703
Most orbital decompression surgery is done for hyperthyroidism-Grave's Disease. The surgery does not stop the Grave's Disease from continuing or worsening. So yes the eyes may start to buldge again and/or there can be assymetry in the appearance.

Stay in close contact with your Internal Medicine specialist (or endocriinologist) and your general ophthalmologist and your orbital surgeon.

JCH III MD
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