Viewing 15 posts - 1 through 15 (of 20 total)
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  • tajkoont
    Post count: 17

    I have had graves disease for one year. I finally feel really good – except for my eyes. They are bulging but not as bad as some peoples. My CT scan shows over 50% inflammation and the steroids caused high eye pressure. My doctor is telling me I need to schedule a decompression surgery really soon. That was a month ago. I kind of freaked out and did not go back to him. I feel like my eyes are starting to get better – is that possible? Are there alternatives to this surgery? It looks terrible! I definitely do not want to go blind. The only symptom I am having is a feel like my eyes are on a rubber band. I can’t look to the side very far. A little bit of double vision when I first wake up but it clears pretty quickly. Nothing seems to be getting worse. I have tried to find someone for a second opinion but there are only 2 doctors in Indiana – and they all know each other.

    I have never had surgery and this scares me to death. Is it really necessary?
    Thoughts on this? Also, I have searched and searched and I cannot find one instance where someone has went blind from this. My doctor told me that mine is extremely bad and I need to do something quickly. I would think I would be having more symptoms.

    Any thoughts or experiences would be appreciated. My eye symptoms are at one year. Am I over the hump?

    Liz1967
    Post count: 305

    Like you, I was really hoping I could avoid orbital decompression. The eye disease burned out in a year as I had total thyroidectomy and orbital radiation and steroids, which tend to hasten burnout, but I waited another eight months hoping to see improvement before I had bilateral decompressions. This surgery was rough but well worth it. It made a huge difference in dryness, bulging, intraocular pressure, appearance and muscle tightness. I had lateral walls done through excision in outer lids, not through nose, as this causes less double vision than the medial through the nose approach and my double vision had stopped progressing so I did not want to make it worse. I had both eyes done at once at Kellogg Eye Center at University of Michigan in Ann Arbor by an oculoplastic surgeon with a lot of experience with Graves. It was a five hour drive from Cincinnati but well worth the travel. If you are near a university medical center, you might check into that or a big city like Indianapolis, Chicago or St Louis.

    Most of the time, intraocular pressure will go down when steroids are stopped. I had high dose intravenous and oral steroids. The enlarged muscles can also raise pressure. If your pressures are not in the danger zone (causing glaucoma) and you are off steroids, you can probably wait long enough to get another opinion or find a doc with more experience.

    My double vision started with morning only but eventually did progress. You do get a bit more motility when they make more room for the enlarged muscles.

    This surgery was the first step for me, was the scariest, but it was totally necessary. After that, I was able to get my double vision corrected and retracted lids fixed. My oculoplastic surgeon commented to me that the lids are actually harder for the surgeon as they are fragile and unpredictable!

    So take some time to feel comfortable with it and even get another opinion or find a different surgeon. As long as you are not in danger of glaucoma or optic neuropathy, you have time; however, the sooner you get it over with, the better you are going to look and feel! While you may see some minor improvement, usually if you have moderate or severe TED, it will only stop progressing, not improve anywhere near what you would be happy with. It can take anywhere from 1-3 years for burnout.

    Hope this helps.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – You got some great insight from Liz1967. The only thing I would add is that one way to tell if you are experiencing optic nerve involvement is to check how you are perceiving colors. If you take something that you KNOW is red, like a can of Coke or a favorite t-shirt, and it starts looking off (for example, more brown), that is definitely a sign that you need to take action soon.

    You definitely want to be comfortable with your surgeon – so even if you have to travel, it might be worth your time to travel for a second opinion.

    Take care!

    tajkoont
    Post count: 17

    I wanted to update you. I have a consultation with Dr. Douglas tomorrow at 4:00. I also got to read my CT scan. It said that I had prominent fatty tissue but it was not compromising my optic nerve. Hopefully, if that is the case I can put the surgery off until next year. I feel like the constant eye change has settled down quiet a bit in the past 6-8 weeks.

    I had to find pics of myself from before disease and after. How depressing! I have aged so much from this. Not sure if it is the eye changes or the weight gain from the methimazole. Luckily, I feel good.

    Did you have any fear of your heart freaking out during surgery? I am sure my fear is stemming from the disease and all of the skipping beats etc from that. I have never had any surgery before and I am scared to death of having some heart freak out. My heart has done some really weird things – looking back I am sure it was the Graves setting in.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – Hopefully, Liz1967 will chime in here.

    I can tell you that I had a surgery (unrelated to Graves’) about 2 months after I went off of methimazole, and I was very worried about going hyper again. I had labs done right before the surgery, and my levels were normal, and I had no issues.

    Dr. Douglas sees many, many Graves’ patients, so he also might have some words to help put your mind at ease.

    Liz1967
    Post count: 305

    Dr Douglas did my decompressions. My first experience with general anesthesia was my thyroidectomy. That would be the riskiest surgery due to release of T3 when removing thyroid and risk of thyroid storm, but they get your levels really low preop to prevent this. It was a piece of cake! The decompressions were also general anesthesia. Your preop testing includes, beside thyroid levels, an EKG. The only time I ever had T3 tested was preop. If you still have a thyroid, they will be really careful your levels are good. You are monitored very carefully throughout surgery. There are always risks with general anesthesia, but this is a relatively short surgery.

    Dr Douglas is leaving Kellogg for practice in California. In fact when I saw him last month, I did not realize he had another clinic at Kellogg. You might ask him for the name of an experienced surgeon near you if he thinks you need ODs. You can certainly trust his judgement on this. People come to see him from all over the world.

    I was on Propanolol (beta blocker) for rapid and irregular heartbeat when I was first diagnosed with Graves due to hyperthyroidism. I was only on it a couple of months and have never had any heart issues since, so hopefully your heart issues were hyperthyroid related and will not recur.

    Hope this helps.

    tajkoont
    Post count: 17

    Thank you both. Dr. Douglas is great. I just skyped with him. He told me ultimately I will need to have the surgery. The urgency will depend on an eye pressure test. I have had high eye pressure since December. I will get another one done with an OTC to check my optic nerve and go from there. His voice was so calming that I really think the flight is worth it to CA.

    I had the fast heartbeat and the palpitations for several years before being diagnosed. I only have issues now when I have PMS. Otherwise, my heart stays calm. Even with the PMS it is nothing like when I had the Graves acting up. The propranolol was wonderful to help calm all of that down. I guess going through the heart stuff for a few years just makes me nervous.

    I still have my thyroid. I am on a low dose of methimolzole. Heading toward a remission – fingers crossed.

    Sincerely thank you for your support. I do not know anyone other then the people on this board that can relate to this disease.

    tajkoont
    Post count: 17

    Kimberly – How long have you been off of the methimazole? I am assuming you are in remission?

    scanders
    Post count: 108

    I’ll just throw my oar in here in case it helps. I have had bilateral OD, and was taking methimazole when I had that surgery, as well as the strabismus surgery. In fact, my FT3 was a little elevated for the last surgery, but the surgeon and anesthesiologist said it was OK to proceed. My PCP said the main purpose of the pre-op these days is to check that our hearts can tolerate the surgery, and of course, you’re monitored very closely during the surgery.

    I had gotten in my head from somewhere that maybe if I waited long enough, since my optic nerve wasn’t compressed, that my eyes would improve enough to avoid the OD. My surgeon said I could wait as long as I wanted as long my eye health wasn’t further compromised, and I might see some improvement, but it wouldn’t be enough to avoid the surgery. My PCP and endo agreed, as did the strabismus MD. At any rate, my husband reassured me that the surgeon, who was voted a Best Doctor by his peers, wouldn’t make a recommendation that wasn’t sound and put his reputation at risk. Made sense, so I took a leap of faith and agreed to it. I have to say, I’m glad I didn’t postpone it further.

    Also, I was off of methimazole from last May until February. I’d hoped I was headed toward remission, but my TSH just never came back up. (Sadly, everything but my TSH rose…) So I’ve had a little hyper-blip, but I felt better within a few weeks, thank goodness, with just a little bit of methimazole, which I am still taking. Anyway, hope this helps.

    Kimberly
    Online Facilitator
    Post count: 4262
    tajkoont wrote:
    Kimberly – How long have you been off of the methimazole? I am assuming you are in remission?

    Hello – After 7 years of taking methimazole — and 18 months euthyroid with no meds — I flipped hypo and am taking replacement hormone.

    Many doctors will use the term “remission” if you’ve been a year with normal levels and no meds. Under this definition, I would have been in considered in “remission” a year after stopping the methimazole.

    However, I’ve never liked to use the word “remission” for for my personal situation, as I have always had mild/moderate eye involvement.

    mojon
    Post count: 25

    tajkoont,

    I was really worried about getting orbital decompression done. Once my Graves had burned out I had the surgery done. It was completely a breeze. They went in through my nose/sinuses. Not even any bruising, black eyes. You could hardly tell anything had happened. After a week of nose bleeds, I was 100%. If I knew it was going to be that easy, I would not have wasted so much of my time worrying. Also, I am over 50, so to clear me for surgery, they did an EKG (and Cardiac Stress Test) which turned out just fine. So no problems with the anesthesiology and surgery. If your doctor has recommended it, and your Graves has done what it’s going to do, go for it. You will be very happy that you did. And yes, make sure to go to a doc who is familiar with, proficient in this specific surgery.

    Lettuce know how you’re doing and how it turns out.

    tajkoont
    Post count: 17

    Hi all – I am getting ready to schedule the orbital decompression and I am scared to death – almost scared enough to not schedule it. I have never been put under before – very very scared. I am a bit hyper right now, which could be contributing to the anxiety. Was taken off methimazole briefly. Next blood test revealed no detectable TSH so I am adjusting to being back on it.

    Any words of encouragement would be appreciated.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – I’ve not had an OD, but we’ve heard many success stories from patients who have. Having an experienced surgeon who has taken the time to go over the risks & benefits with you is key.

    You might also be interested in joining our closed Facebook group for some additional feedback, as that group has more activity than this one. From the main FB Page, you can click Visit/Join Group.

    https://www.facebook.com/GDATF/

    Wishing you all the best!

    Liz1967
    Post count: 305

    It is not as bad as you are anticipating. You might have two uncomfortable postop days. If you do not do it and your TED recurs, you run the risk of optic neuritis as you have no space to spare in your orbits. TED recurs more often than they previously thought. I have had one flareup three years after it was completely burned out. I was grateful that I had had the ODs because there was no pressure put on the nerve, just some irritation and worsening diplopia, all of which were resolved with a short course of high dose oral prednisone. It makes a huge difference in dryness and appearance. My life would be miserable if I had not had the orbital decompressions. I was 65 the first time I had general anesthesia for the thyroidectomy and I was scared, but it turned out to be no big deal. I have had it twice more, ODs and strabismus surgery, since then with no issues at all. You will be fine.

    Klavillotti
    Post count: 1

    Hello,

    I am scheduling orbital decompression with Dr. Raymond Douglas. His office states that he does not partner with insurance, so my out of pocket is $11,000. We can cover that portion, but the surgery is actually taking place at LaPeer Surgical Center on Wilshire Blvd., and they will not give us a quote for anesthesia until we book the surgery. Once we book the surgery, we are locked in under contract. Does anyone know typical hourly anesthesia rates? The surgical center is also out of network for us. Their quote for ‘cosmetic’ anesthesia is $937 per half hour. There is no quote for insurance until we are billed. Thanks for all your help and support.

    -Kaylan

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