Viewing 9 posts - 1 through 9 (of 9 total)
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  • snelsen
    Participant
    Post count: 1909

    Wish me lots of luck!
    Shirley

    Kimberly
    Keymaster
    Post count: 4294

    Shirley – Sending good thoughts your way! We will miss you in Boston. The good news is that you are getting closer and closer to the end of a very long journey! (They are only doing one eye this time, correct?)

    Take care!

    sutan351
    Participant
    Post count: 39

    Shirley,

    Thinking of you as your surgery date is finally here. Very anxious to hear more about this surgery and your result. I have an appt. with two surgeons the end of October to discuss my lid retraction surgery and what can be done about my lower lid on the right side. The surgeon that did my muscle surgery is hesitant to do another….so dealing with restricted mobility of my right eye on downward gaze and the double vision is that plane of sight. Straight ahead OK with prisim correction.

    Best Wishes for a Speedy Recovery,

    Sandy

    snelsen
    Participant
    Post count: 1909

    I am estatic to report that this whole deal went off better than I could have possibly have dreamed. The graft site in my mouth, which I expected non-stop pain from, does not even HURT! i have absolutely no idea why it doesn’t for there is a huge divot in my hard palate! The lower lid has long sutures taped to my forehead with a pressure dressing over that, so the graft can "take" in my lower eyelid. The anesthesia was great. I am an RN, and did work in the OR and recovery room, so I am happily familiar with the drugs, here is a short and brief summary. No general anesthetic at all. A little Versed, which is an amnesic, anyone who has a colonoscopy has had it. I call it the "forgetting drug," it is a great description. A litte fentany up front at beginning of surgery, IV (pain med, wears of really fast.) And propofol, which is a white substance given IV. The instant it hits your vascular system, you are OUT! But the magic of this drug is they can stop it put you in a twilight sleep, where you are conscious and follow directions (open your mouth now, Shirley, I need to get to your palate for the graft." and I do it. It is used in cataract surgery, strabismus surgery (open you eyes, Shirley, do you see one line or two? Do you have double vision? where?" And, of course you have no remote idea that you have done theses thing.s When the drug is stopped, you are immediately awake, and ready to go home. It is a magic drug for anestesia for short procedures, and the appropriate surgeries. It is called a MAC, moniterd conscious (not really, only when they want you to be awake) anesthesia.
    Ok, any questions? I have been terrified of this surgery, but three different consults in three states confirmed taht I really needed to have it done. Sorry for typos, I have one eye right now. The best "outcomes,excellent results," come from the palatal graft. Some people opt for an artifical graft, but the success rate is not as good, the rejection rate is higher, and there are a few docs who will use ear cartilage. But in my research, and what all docs say, is the the palatal graft rate is the must successful, and lasts. Some of the other results result in lid lag and retraction in a period of time,
    But, as we say on this site all the time, everyone makes their own choices for their own personal reasons. This was an EXTREMELY hard decision for me, and I truly was terrified. Now, I am ready to move on, get the other eye done in 3 weeks, maybe THEN my mouth will really hurt, with two graft sites. But I want everything with TED experience to be as over as it possible can get. It has been two years of hell.
    Shirley I will write again

    Kimberly
    Keymaster
    Post count: 4294

    Shirley – I’m so glad to hear that the procedure went even better than expected! And thank you so much for leaving detailed notes as you go through each step of the journey. Your words definitely bring insight and comfort to others who are just getting started on the TED rollercoaster.

    Take care!

    Ski
    Participant
    Post count: 1569

    Shirley, I am SO GLAD to hear your good news!!! And I also thank you for your detailed account, you know it’ll help people down the road! Wishing you continued success!

    msmanatee
    Participant
    Post count: 20

    I haven’t been on the site lately but remembered you were facing some tough choices, Shirley. I’m very happy for you and look forward to you posting again soon.

    Kellimoe
    Participant
    Post count: 5

    Shirley,

    I am so glad that this surgery went well for you. I know what you mean about facing what the doctors are saying needs to be done. I’m new on here and your post gives me peace knowing that these things turn out OK. They want me to start radiation in both of my eyes and I’m freaking out about it. Do I or don’t I. I guess it’s never ending decisions for us with this very confusing disease. I’m so glad yours turned out so well and thanks for keeping us informed….especially with the typos! That’s how you know you have your eyesight!!! <img decoding=” title=”Smile” />

    snelsen
    Participant
    Post count: 1909

    Hi Kelli,
    well, I have my post op appt. tomorrow. I have not seen my eye yet, for it is covered. Hard to negotiate withe one eye. It won’t be long enough for my brain to make new pathways, and then, in a couple weeks when I have the OTHER eye done, it will begin again. I am nearing the end, I hope of 7 separate eye surgeries,a nd i am definitely counting EACH eye as one surgery. It has been very hard.

    I have not had radiation to my eyes, but I am pretty sure if you put that in the search box above, you will read posts from people who have had this experience. Of course you are freaking out about it! I find that the more information I have the better off I am. I suggest you make a list of your questions, and be sure they answer them. I did this for everything, for example…
    1. Why are you recommending radiation?
    2. What other options are there for me?
    3. What are the pros?
    4.*what are the cons?
    5. Is this a decision based on the geographics of where I live?
    6. What results do you expect? When will I know there is improvement?
    7. Will the improvement be temporary or permanent? Wrapped up in that question, is sometimes the purpose is to interfere with the progress of TED, which can possible decrease the degree of severity of TEd.
    8, I suggest strongly that you sign medical release of information forms, available at the front desk, orhave one mailed, so that you get copies of all visits and all labs. It is impossible to remember all that is said during an appointment, and it is a whole new language and world.

    Best wishes to you in your decision making. If you understand stuff, I believe it is much more encouraging, rather than the total unknown. I hope others respond who have had radiation.Shirley

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