Viewing 9 posts - 1 through 9 (of 9 total)
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  • tnapavlu
    Participant
    March 5, 2013 at 11:10 am
    Post count: 20
    #1059736

    I struggled for almost 5 years in and out of the hospital trying to figure out why I was always sick, they tested me for everything (seizures, ms, lupus, etc..) After finally moving to another state and going to a new neurologist about my migraines he begged to let him do just a couple more blood tests on me, I finally agreed, I was tired of feeling like a lab rat. I of course was diagnosed with Grave’s and was dang near in a storm at this point…the only option given was TT but needed to bring level down so they wouldn’t kill me on the spot!

    I felt better instantly after the surgery and have only needed my level adjusted once since, and this was done about 5 years ago! I am now going through the eye procedures for my TED, I have just completed the OD for both eyes and am now just dealing with the face numbness and double vision. I will go back in April to correct double vision, and then we will lower upper lids. Will be so glad when all is done.

    I will admit I still have my days where I feel absolutely crazy, since I’m “stable” and I wake up and will have tremors, or muscle spasms, or the occasional Grave Rage… but I’m assuming and keep telling myself it is what it is. This is a disease, it is much like MS or Lupus, we too will wake up and have our good days and bad days, it is what we make out of them that matters. Which bring me to wanting to tell all of you in here THANK YOU, with out all of you the bad days would be much worse, and on the good days you make me smile even more.

    Again, Thank you everyone and hugs to all! We all will get through this together!!!:D

    gatorgirly
    Participant
    March 5, 2013 at 12:38 pm
    Post count: 326
    #1177172

    Oh wow, I’m sorry about the numbness and double vision. You are the first person I have heard of who is dealing with facial numbness post-OD like I am. Is it all over? Mine is just on the right side, and includes my upper teeth and gums, upper lip, and the cheek between my nose and eye. I have sensation on the surface but feel strong pressure when I touch the numb parts. It’s weird. I’m five months post-op so I’m starting to worry it’s not temporary…

    April is soon! It’s great that you’ll have the muscle surgery so soon and not have to deal with the double vision much longer. I’m still 4-6 months away from eyelid lowering since my thyroid levels won’t cooperate.

    Glad to hear you’re on the road to feeling (and looking) well again.

    vgould
    Participant
    March 5, 2013 at 3:41 pm
    Post count: 4
    #1177173

    I am a few weeks away from od now and am wondering does everyone end up with the double vision ( my vision has always been blurry but not double) and with numbness. It makes me wonder if I’m making the right decision. I too have had enough of the endless problems. It seems I get one thing fixed then the next one comes. Any comments anyone have to offer? I too truely appreciate having this sight to go to with what seems like my endless questions.
    You are all godsends.

    Kimberly
    Keymaster
    March 5, 2013 at 4:00 pm
    Post count: 4294
    #1177174

    @tnapavlu – Thanks for the kind words and the encouragement! Hope all goes well with your subsequent surgeries!


    @vgould     – Double vision *is* a risk of orbital decompression surgery, but it doesn’t happen to all patients. Any numbness is generally temporary, although it’s interesting that both tnapavlu and gatorgirly seem to be experiencing a similar issue. Most patients that have posted here have been happy with the results of their OD, both in terms of appearance and getting the eyelids to finally close — but you definitely want to discuss the risks and benefits with your doctor!

    gatorgirly
    Participant
    March 5, 2013 at 5:55 pm
    Post count: 326
    #1177175

    @vgould, I had no double vision before or after my surgery. According to my surgeon, my chances of developing double vision because of the OD were 50/50 because of how much bone and fat (mostly bone) he had to remove, but I was fortunate and still have the same good (with contacts/glasses) vision as before the surgery.

    vgould
    Participant
    March 6, 2013 at 5:58 am
    Post count: 4
    #1177176

    Thanks so much for the encouragement. I am just so nervous about this but yet am looking forward to the improvement after. It ‘s just the anticipation of it. We are traveling to have it done which also adds to my worries but I am so impressed with the doctors and staff that I’m hoping all will turn out well.

    snelsen
    Participant
    March 6, 2013 at 7:07 am
    Post count: 1909
    #1177177

    Hi, since you have already had two OD’s. I think you will find the subsequent strabismus surgery a walk in the park! As Kimberly said, double vision can happen after OD. I had double vision before my OD, because of the severity of TED. For me strabismus surgery was sooooo wonderful, and my double vision was gone immediately after the surgery, and has never returned. It is a less complicated procedure, with many fewer risks and complications, that an OD.
    I think you’ll said through it. No pain to speak of at all, and you can pretty much resume your life except strenuous things.
    Shirley

    tnapavlu
    Participant
    March 6, 2013 at 2:00 pm
    Post count: 20
    #1177178

    @v, I noticed that Gator was possibly allowed to wear contacts to correct her vision before her OD surgery, I haven’t been allowed to wear contacts for 10 years now because of the severity of my TED. I don’t know if this may have any result on the effect on her not getting the double and me getting it but it might?! I do have to tell Gator thanks though, I had read her posts prior to having my OD surgeries and saw that she had numbness and immediatly asked my Dr’s about this and they confirmed that it is a definite possibility. I ended up with it and it sounds like her and mine is almost identical. From eye down to upper lip, nose and cheek area is numb and tingling. If I remember correctly she also had both of her eyes done at the same time, they did mine seperatly starting with the right in Dec. and we just did the left in Feb. I am hoping it will subside soon but I am only 2 1/2 months post on left and have feeling it will be a few more months. If you can live with it though I feel as though it is definitly worth it, as I said before I have had my ups and downs with this process but the thought of being able to wear contacts again, not using all the ointments anymore, and not having people stare all the time is well worth the process!

    Hang in there, use the support system and you will get through it!

    gatorgirly
    Participant
    March 7, 2013 at 6:19 am
    Post count: 326
    #1177179

    @tnapavlu – Well there was a period for about two months when I had the initial TED onset where I could not wear my contacts–my eyes were just too dry, swollen, and painful. However, after being on 50mg of prednisone for about eight weeks, they had “calmed down” enough for me to wear my contacts again.

    I’m glad you were aware of the facial numbness beforehand because I was not. Although I love my surgeon, that was the one thing that really bothered me. I was too sick immediately after the surgery to notice it, but when we realized it in the middle of the night, my dad started calling both surgeons’ offices frantically until finally my oculofacial surgeon said, “Yeah, that’s temporary.”

    I did have both eyes done at the same time, but the right eye required much more extensive decompression, so that’s why the numbness is only on the right side. The surgeon explained that there was a lot more moving and shoving in that cheek area while he was removing bone from the orbit floor, than there was on the left side.

    Can you wear your contacts again? My prescription is pretty low but it’s still enough that without glasses or contacts, I can only see blobs. But with everything my poor eyes have been through, I’m not interested in Lasik any time soon.

    As of this past Monday, my eyes are both at 18mm. They were at 25mm (right) and 23mm (left), so that’s about as drastic a decompression as one could ask for. And I’m totally happy with the results!

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