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Orbital Decompression?
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Hi everyone,
It's been a while I've been feeling relatively well! I'll try to post a journal article soon to catch up all of my DS friends soon! Now I am faced with some tough decisions about my eyes. Luckily I do not have a horrible case of TED and things have been pretty stable for the last 4 years or so. My right eye has 2mm of bulging (20mm) and a slight down gaze but no double vision- just pain and stiffness especially looking up and a general pain and stiffness which causes headaches at times. I also have lid retraction in both eyes but mostly in my right eye (I don't remember the measurements). I have been forced to wear my super thick glasses (-14.00) which actually hide my eyes thankfully, so the difference in my eyes in not noticeable to someone who I might just meet on the street. And actually I'm so blind that I can't really see what my eyes look like unless I put contacts in (which I can only wear for an hour at most) and at that point it is very difficult to look at myself. :( My first plastic surgeon who moved away just recommended lid retraction. My second surgeon at Mass Eye and Ear is possibly recommending endoscopic decompression just through the nose and sinuses so for the first time I am having to consider OD. So, I am wondering if anyone out there had the endoscopic decompression done nasally (so no incision) I'm not sure it is worth it from a cosmetic point of view (although there is a very slight chance I may not need eye lid surgery if the eye goes back) because you can't necessarily tell my eye is bulging other than the puffiness. Does anyone have experience with having only nasal orbital decompression? (or any OD?) If so, did it help the pain and stiffness (that is mostly why I would be doing it since cosmetically it is not worth the risk). Did you have any lasting problems with your sinuses etc? Did you end up with double vision? (which I think is a high risk). I hate to cause double vision if I don't have it now! Since I'm not a huge fan of radiation I'm also hesitant to have a CT scan since it will only be used for surgery and if I don't have surgery (other than eyelid) I don't need it. Thanks in advance! Sue Posted on 07/15/12, 09:17 pm |
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Hugs Sue...its so good to hear from you. I'm sorry your still dealing with TED...TED sucks! I am wondering why they are recommending OD rather than eye muscle surgery. Eye muscle surgery works very well at taking away the pain and discomfort of stiff eye muscles. They also place your eyes back where they are supposed to be in the sockets. Once your eyes are back in the sockets it should relieve the retraction. I had the eye muscle surgery and it worked great...my eyes are free to move and the pain from stiff muscles is gone. The one and only side effect I have from the surgery is...in re-attaching the eye muscles...since they had to place them lower down...it has pulled my lower eye lids down a bit which has caused some eye dryness especially at night. But...my double vision is gone and my eyes move freely with no restriction.
I had the scan...its the only way to tell what is actually going on behind the eyes. Its very important you get this done regardless of what surgery you have. It lets them know exactly what they are dealing with. I actually had 2 scans...one without the dye and one with...the scan with the dye gave an accurate account of whats happening. Big Hugs...Kathy 
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I have Graves and now TED also, Sue. I agree with Kathy, why OD? in fact, I was told OD also and didnt even know about the muscle surgery until later. I dont have double vision and dont want it! I have the same protrusion and swelling of eyelids. Its horrid! Had the orbital ct scan and showed enlargement of suprerior muscle relating to Graves Opthalmopathy. I am trying to wait it out as I dont have insurance.If I did have any I would have had all kinds of tests not needed. I am paying as I go and it is hard. I am not on optimal treatment for thyroid as yet so my eyes are worst now as I am hypo so trying to get it figured out. Eye doc put me on Restatsis yesterday for the dryness and inflammation. Hope it helps. Dont know. I was told endoscopic decompression by one EENT and OD by occulplastic surgeron for this and they work together, so one was confused apparentely. I dont think they would be done together for any reason.I have not gone back and dont intend to.I wish I could offer more, but good luck to you and maybe someone else on the forum can answer your questions. Dairytech has sure been a help to me with what shes been through. Regards.
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Hi Sue!
I have Grave's and TED and have just completed an OD on both eyes. It was necessary for me to do the OD because my Ophthalmologist was concerned that I could lose my eyesight. It is more than just a cosmetic procedure. When thinking of doing an OD, you have to decide how bad the TED is for you. You might want to ask your doctor if any tearing of your retina has taken place? How extensive is the damage to you eyes? If you are only concerned about redness, stiffness and pain, then you might want to do the muscle surgery like Kathy suggests. I didn't do the nasal OD because of the extensive damage to my eyes. I can say that despite the pain of surgery I would do it again because I feel so much better. It's been about 2 years since the surgery and I don't have any sinus problems (you have to be careful of blowing your nose for awhile). I see much better and don't have double vision. My doctor was excellent, has performed many ODs over the years and is willing to answer any questions you might have. His name is Dr. Stephen Katz of OSU Medical Center's Havner Eye Institute. Please let me know if you have any questions in the future. This is a big decision to make for yourself. All my best, Shelly
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I am scheduled for surgical decompression on the 22nd of august. I'm bulging 6 millimeters in 1 eye and 8 in the other... I've gone colorblind and feel like I'm looking through a tunnel.... So I don't have a choice anymore I have to have them decompress. This only started with my eyes 6 months ago and it went so quickly! Just starting with the dry eyes "when I'm not bawling, lol) the swelling and then the eyes just bulging out. Obviously by my rambling I am very nervous about this. I have 3 surgeries scheduled every 2 months until this is over. Graves disease removed all my friendships from my life.... eccept my husband; the most incredible person I know. what is weird to me is that the eye problems started with in a month of them removing my thyroid... I sure wish I had a friend!
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Wow I'm rude excuse me I'm sorry. I made that all about me and vented all over you when you were asking a question. Again I apologize!
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Hugs halfdeadrat...no worries and welcome. It sounds by your symptoms that OD is warranted in your case. You have some pretty serious vision issues.
I also had an acute case of TED...mine all happened in a few weeks. For me...intravenous steroids stopped mine dead in its tracks...I was lucky. We havnt had many people on here who has had OD...I was wondering if you would like to keep us posted on how these operations turn out for you? You would be a great asset here for others who are facing those same issues. Big Hugs...Kathy
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Kathy, I had a question for you about your intravenous steroids - which doctor made the call for you to have that? Is it your regular ophthalmologist or the oculofacial surgeon or the endo? Right now I'm not at risk but if something starts to happen I want to be ready and I'm not sure my current batch of docs is the best.
All you guys facing surgery wishing you very successful surgeries! I've seen some amazing before and after pics that show they can accomplish a lot.
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My Opth and GP arranged it. They worked very closely together. The first month that my TED was really bad I went in to see my Opth twice a week...he even had me come in on a Saturday for an emergency visit. He and my GP took very good care of me. My GP also has Graves Disease...talk about luck...she had RAI and regretted it. She told me she would do everything in her power to help me achieve remission with ATD's and she kept her promise. Big Hugs....Kathy
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You were so lucky to have that combo of doctors! It sounds over and over that it isn't really the title or even formal education of the doc involved, but the individual that determines the healing. I have a feeling I may be shopping around at some point. Thanks Kathy!
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