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in reply to: Quick Orbital Decompression Post-Op Update #1174540
Sorry to resurrect an old post, but I wanted to update y’all without repeating myself all over again.
I saw my oculofacial surgeon this morning. It has been seven weeks since my surgery. The upper eyelid stitches (which dissolved) are completely healed and the scars are completely invisible, which is somewhat surprising since I am so fair-skinned and tend to get puffy, pink scars from paper cuts or razor mishaps.
Everything else is as it should be. The feeling on the right side of my face continues to return in the form of that pins & needles feeling when your foot wakes up after having fallen asleep. It’s not painful, but it’s also not comfortable, and it’s pretty constant. He said this could last up to a year. Oh well.
I have very minor diplopia (double vision) when I look as far up as I can without moving my head. Who cares? I don’t, and he doesn’t either, because who the heck looks all the way up without moving their head? So we’re not touching that, and he continued to profess how delighted he was that I didn’t have any double vision that affected my eyesight or daily living. He was quite concerned this would happen as a result of removing so much bone and fat.
He wants to wait six months before performing the upper eyelid surgery, which I do need, but he said there is still some swelling that will continue to improve over the next few months. He also doesn’t want to perform any surgeries while my thyroid levels are unstable, which they continue to be. I’m just glad they behaved the week of my surgery, for the first and only time in three years. I was really hoping I could have the surgery soon, but I agree it’s best to wait until all the swelling is gone and my levels are stable.
My proptosis before surgery was 23mm in the left eye, 25mm in the right eye. Both eyes are now sitting pretty at 19mm. I have no dry, only some dryness, moreso than before surgery. I can no longer wear my two-week contacts for the full two weeks…more like 10 days. I am going to inquire with my optometrist about dailies, at least for the next few months. The surgeon gave me drops but I imagine the dryness is because of the minor upper eyelid retraction.
All in all, he is pleased with his work and even more pleased with my progress and realistic outlook on my situation. He knows I’m eager to be done with surgeries and back to my pre-TED face, but he appreciates that I am educated and informed on how this whole process needs to go.
in reply to: OD in the “hot” Phase #1175079I know your question is about the OD, not the TT/second RAI, but…
It took six months (22 weeks, to be exactly) for my RAI dose to finally kick in. I would encourage you to talk to your physician about waiting until that six-month mark, as that is the “industry standard” for when a decision should be made about a second dose. It hasn’t even been three months for you if my math is correct. It may turn out in another three months, you’re still hyper and do need that second dose, but it’s your body and your thyroid to kill, so you may want to talk to your physician about why he is so eager to administer a second dose before giving the first one a chance to work. Or doing a TT – either way, both carry their own risks and hassles so why put your body through a possibly unnecessary treatment when the RAI may kick in a week later?
in reply to: Flu shot and Graves/TED #1175096Even after I was treated (I had RAI), my endo in FL still was not comfortable with me receiving a flu shot while my levels remained unstable. I had to have him write a note two years in a row because I worked in a hospital where employees were required to either get a flu shot, or get a doctor’s note and wear a mask for the entirety of flu season.
I think my FL endo told me it was about 50/50 among physicians – 50% supported flu shots for Graves’ patients, 50% did not.
However, I have since moved to MA and my new endo believes there is no relationship between the flu shot and Graves’ or the thyroid whatsoever. And my levels still remain unstable. So, I got a flu shot this year and I’m glad I did, because my dad (with whom I live) came down with an awful case of the flu just a month after I got vaccinated. After being out of work for surgery for two weeks and then part-time for another two weeks, I can’t afford to get sick this winter. I will get a flu shot every year from now on until research proves it fruitless or I contract some other medical condition that prevents me from getting one.
in reply to: Graves Eye Disease TED Decompression question #1175067I had bilateral OD 6 1/2 weeks ago, and I am so glad I did. I didn’t have any double before or after the surgery, so I can’t really speak to that. Double vision requires eye muscle surgery, and I’m almost certain they won’t do that during or even any time close to your OD as that would be a lot of trauma to your eye all at once. My surgeon told me if I developed double vision as a result of OD (50/50 chance), I would have to wait three months before the strabismus surgery to allow my eyes to heal and the swelling to subside.
I was in the cold phase for eight months when I met the surgeon, but he made me wait until I reached a full year before operating. I think surgeons like to wait even longer, but since I was only in a hot phase for about a month, he made an exception for me.
As for scarring, mine was done endonasally – so an ENT surgeon went up either nostril to remove the medial walls (bones between your eyes and nose). My oculofacial surgeon went through my lower lids to remove the orbital floors (the bone under your eyes), and went through my upper lids to remove orbital fat from behind my eyes. The only incisions were in my upper lids along the crease lines, so no one can see them except me now when I put my makeup on in the morning. Some people have their lateral walls (bones on outside of eyes near temples) removed, and that requires a small incision, but my surgeon told me he does that right where most people already have small crow’s feet wrinkles. I’m 28, so I don’t have wrinkles yet, but even so, they would’ve been hardly noticeable after a few weeks. He ended up not removing the lateral walls because the rest of the bone and fat he removed created enough space for my eyes to fall back to where they are supposed to be.
Since you’re only having one eye done, your recovery will be a lot easier. I was basically blind for a few days and had very limited eyesight due to soreness and eye fatigue that persisted for almost a month. I took two full weeks off from work and then worked half-days for another two weeks. I’ve been back to full time for a month now and feel great. I would highly recommend reading my posts about the recovery. Shirley (snelsen) had OD as well as posted about it. Make sure you have a caregiver for the first 24-48 hours, and a driver for a week or two depending on how you feel. Get gel packs ahead of time. The hospital gave me a nice little thing that had a slot for ice packs but it wrapped around my head and velcroed in the back. It was so much easier than trying to balance a bag of peas on my head, especially since I was supposed to remain mostly upright when I slept (and sleep was all I did for the first week). Get some extra pillows, put a few under the head of your mattress and then plan to use a lot under your head and on your sides to keep yourself upright as well.
I was worried about the anesthesia as well and I did get a little sick but that’s probably because I had to start fasting at midnight but my surgery wasn’t until 1 p.m. and it took a few hours longer than the surgeons expected, so it had been about 20 hours by the time I got home. I was too exhausted to be hungry or thirsty and that’s probably why I got sick that first night. My appetite was back in full force in about three days. I got Percocet for the first week and then switched to OTC naproxen. The pain was significant but manageable. I think Shirley is the one who said she never needed a pain pill after her OD. We’re all different, and it’s good to make sure you get the prescription just in case, even if you never need it.
I can PM you a link to my personal blog, where I documented the whole process, including photos.
in reply to: High Cortisol the Culprit of Graves’ Rage? #1175072Cortisol is also linked to belly fat in those who are otherwise in decent shape, which may explain the “Graves’ belly” some of us get after starting ATDs or – more commonly – after TT or RAI.
in reply to: Joint/Muscle Pain – How common? #1174980FYI: the website you referenced (ehow.com) is just like Wikipedia and other unreliable internet sources. Anyone can write an “article” and have it “published.” Please never take anything on those sites for gospel. The Mayo Clinic information is probably valid, but go to the Mayo Clinic website to get it.
in reply to: Total Thyroidectomy without scar? #1175052I initially opted for surgery, and it was going to be performed by an otolaryngology surgeon who specialized in thyroidectomies at a major university teaching hospital in Florida. He performs some thyroidectomies through the armpit and has obviously had success with that approach. In the end, I chose RAI for a number of reasons, but none had anything to do with him or his approach. In fact, I was drawn to that approach and considered a good candidate because I get keloid scars so a traditional thyroidectomy would not have been ideal for me.
Granted, this was all back in 2010. Now, in doing a search for da Vinci thyroidectomy videos, I get nothing that isn’t at least a year old. And their website no longer lists thyroid surgeries, so maybe the FDA approval was withdrawn…? That’d be too bad, because TT was basically taken off the table for me when my first surgeon found out I get keloids. Silly reason not to be allowed surgery if you are strongly opposed to ATDs or RAI!
in reply to: Normal T3/T4, Low TSH? #1174930Getting a little off-topic here, but the nerve damage is extensive yet temporary. Basically all of the nerves between my eye and mouth were cut, and until the nerves regrow/heal (?), the numbness will persist. My surgeon said to be patient for up to six months. Oy!
in reply to: Normal T3/T4, Low TSH? #1174928Hi Shirley,
Actually, I’m in the opposite boat. My TSH has been so inconsistent. I go from hyper to hypo constantly. Seems to me there has to be something else going on. My endo was the one who said six week was too soon and I should wait three months before having labs again (he said this after my August 25 labs). Good thing I pushed for six months or I could be seriously hyper two months from now. Now he wants me to have labs again in another six weeks. I’ve never gone more than six weeks between labs since my diagnosis in February 2010…crazy. And I agree, I can’t figure that study out. I’m a writer, so science is not my strong suit.
As for the OD, yes – I had both done at once. They removed a lot of orbital fat, the medial walls and the inferior walls, but left the lateral walls alone. I got lucky – no double vision.
in reply to: Normal T3/T4, Low TSH? #1174926Thanks for that. I am going to call my endocrinologist and see if I can get in to see him so we can hash all this out. You’re right that I feel good on 88mcg despite a very low TSH, but I also felt good when it was a normal. I know symptoms tend to lag along with TSH, so maybe I will start feeling hyper soon. Who knows? Either way, I have another 10 days of 88mcg. Hopefully I can get in to see my endo before then.
Oh, and thanks for asking. I’m feeling great post-surgery. The results are immediate visible to everyone who has seen me and knew how bad my eyes were before. I’m back to 100% physically and mentally. The only lasting effect is the numbness on the right side of my face from nerve damage during the surgery, but the feeling is slowly returning in the form of pain and itching. I’ll take it!
in reply to: Normal T3/T4, Low TSH? #1174924My understand has been that I will always have Graves’ and its antibodies. As for eye symptoms, I had bilateral orbital decompression five weeks ago because I had been in the cold phase of TED for more than a year, so no eye symptoms. I read the study but couldn’t find anything about post-RAI or TT patients, so I’m not sure how to interpret it.
in reply to: 2nd Dose RAI #1174799I’m with Naisly – I’m confused, too. RAI took six months for me, and I became so hyper during those six months that I had to go back on PTU (another ATD like Tapazole). I only had a small dose (10 mCi) of RAI so we knew it might not have been enough, but eventually, after six long months – it worked. And I mean worked. I was severely hypo for a few weeks and remained hypo for a year despite constantly adjusting my Synthroid. I was going through some other stuff, like GI issues, a 30-pound weight gain, a breakup, a 1500-mile move, etc.
I’m sorry, but it sounds like your endocrinologist is pushing for a second dose of RAI well before the first dose has been given a chance to do its job. I know ATDs aren’t fun, but many of us go back on them temporarily until the RAI can finish its work.
Is there a reason why you can’t find a new endo? Not simply because of his pushing you for a second dose, but also because he sounds like a jerk in general and there’s obviously a reason why you were letting your GP manage your Graves’ for so long.
Are you near any safety net hospitals? These are hospitals that offer charity care, usually in the ER, for people who cannot pay but need immediate treatment. If you go in the early morning, there is usually an endocrinologist there doing rounds. Or you might find an ER physician who truly understands your symptoms and is willing to run the appropriate tests to either rule out or confirm thyroid issues. Just make sure you’re vocal about your financial situation.
in reply to: TED symptoms or no? #1174740I felt that exact same pressure you described. It was my first symptom, and it lasted several months so I got in to see an ophthalmologist who said he was experienced with TED but that turned out to be a crock of you-know-what. The pressure became so strong that it eventually became pain instead of just pressure. I felt it in both eyes, but prednisone helped immediately. Both of eyes were affected but my right eye was protruded 2mm further than my left eye. I quickly learned how to squint for photos so that they matched up, but in my everyday life, it was pretty noticeable.
I was diagnosed by a neuro-ophthalmologist the minute he walked into the exam room, but the definitive diagnosis came a day later via an orbital MRI with contrast. I have also had CT scans, some kind of picture taken of the space behind my eyes (I forgot what this was called), and with antibody testing. At first, two different ophthalmologists told me I had allergies, infections, or just plain old headaches.
Please continue to press specialists about this issue. The sooner you can get a correct diagnosis, the sooner you can begin treatment.
in reply to: Quitting my job #1174703I’m thinking of you this morning. Let us know how it went.
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