[gatorgirly]

in reply to: orbital decompression surgery #1182238

PM = private message. Just click “PM” underneath the username and it lets you send a private message. I’ll send you the link now

I think your surgeon is spot on about the 3-week mark for side-sleeping.

Everyone is different. I normally have a very high pain threshold – I was a gymnast and cheerleader and was always training on major injuries through the pain. But my eyes were a whole new ballgame. It also depends what approach they use. For me, I had the lateral walls (bones up against the nose), orbit floor (bones below the eyeballs), and orbital fat (fat from behind my eyes) removed. That’s intense. To get to the lateral walls, they went up my nostrils (no scars). To get to the orbit floor, they went through my bottom eyelid with the incisions through the fleshy part below the eyes (no scars). To get to the fat behind my eyes, they went through my upper eyelids (scars but hardly noticeable within a few weeks).

As for the paid meds, the nurses told me to take the maximum dose out of the starting gate, and then to take my next dose on schedule rather than waiting for the pain to become unbearable. Slowly, I was able to take 1 pill versus 2, and then I was able to take them 6-8 hours apart instead of every 4, then I could sleep through the night without a dose, and so on until I switched to straight over-the-counter Tylenol (ibuprofen made the bleeding worse).

I hope you’re lucky and don’t need any pain meds at all, but you’re not weak or unhealthy if you need them. This is major surgery – not some cosmetic procedure!

[gatorgirly]

in reply to: Graves’ Opthalmopathy #1182205

Shirley, just a note. I had no optic neuropathy but was prescribed oral prednisone which provided immediate relief for the pain and reduced the swelling enough that I could close my eyes. Of course, I still needed surgery but they helped a LOT with the severity of my TED. The side effects (weight gain, stretch marks, acne, moon face) were miserable but the relief I got was worth it. Barely, but worth it.

[gatorgirly]

in reply to: orbital decompression surgery #1182232

I had bilateral orbital decompression in September 2012 and followed all of Shirley’s advice. I also found that putting jersey or flannel sheets on my bed helped me not slide down with the head raised so much – cotton or silk sheets didn’t work while the bed was elevated. I also made myself a pillow fort so that I could sleep as comfortably as possible without accidentally rolling over (I’m a side sleeper but had to sleep on my back for the first week).

I had a much different experience from Shirley. I don’t tolerate anesthesia well, so I was psychically sick for the first 48 hours. Then, the pain was almost unbearable so I was taking the maximum percocet dose which almost made my stomach a wreck. Basically it was a miserable two weeks spent in bed. I felt well enough to go back to work part time in week three, and finally back to full time in week four, by which time my bruises finally healed. Also, one of my eyes was patched shut for the first 48 hours and that probably contributed to the nausea – throwing off my balance and vision and all that. But otherwise, my vision was not affected whatsoever by the surgery. I put my contacts back in after week three.

I don’t regret any of it, but it wasn’t a walk in the park. My eyes required a LOT of work and therefore it was a long, slow recovery process but I forget about it almost every single day now that I look like my old self.

The only hiccup was a bit of permanent nerve damage – I have no feeling in my right upper gums, lip, nostril and the part of my cheek from my mouth to just below my eye. It’s OK – just weird.

I posted about my surgery in my personal blog and would be happy to PM you the link if you’re interested.

Let me know if you have any other questions! Good luck – you’re going to love your eyes afterward.

[gatorgirly]

in reply to: TSH of .7 (range .3-3) #1182104

Well that explains why you’ve been feeling hyper. You don’t need Seroquel for hyper symptoms – namely insomnia – you need ATDs (unless you need the Seroquel for other reasons).

I don’t buy the whole “some people don’t have a low TSH.” You aren’t feeling right, so it sounds like you need to be on at least a small dose of ATDs. I could never achieve remission so I went the RAI route, therefore I can’t comment on whether or not you’re coming out of remission but it seems to be if you need any dose of ATDs to feel well, something isn’t right. I hope the methimazole starts working and you feel better soon.

[gatorgirly]

in reply to: TSH of .7 (range .3-3) #1182101

Not everyone feels good simply because they are within their lab’s normal range. Personally, I feel much better when my TSH is on the low end of normal – around 1.0. When it was a 2.0 or a 3.0 (my lab’s normal is 0.4-4.0), I felt hypo and awful. So we upped my dose and my TSH has been steady at a pleasant 1.0 for more than a year now.

What symptoms are you having? 0.5 is on the low end so I assume you’re feeling hyper? I would see if maybe your endo thinks lowering your dose or even alternating doses would help bump up your TSH just enough to make you feel euthyroid. For a while, I alternated between 50 and 75mcg every other day. Now I am actually on 88mcg.

[gatorgirly]

in reply to: Today is the day #1182076

I too had a small dose – 10 mCi. I was supposed to be in isolation for 72 hours but I had it done at noon on a Friday and was told I could go back to work on Monday but not attend our staff meeting around a cramped conference table. The guy I was dating at the time was either a saint or an idiot, and refused to leave my side the whole weekend. I felt like I had strep for a few days but kept sucking on hard candy and drinking a TON of water, and felt better in no time.

I slowly began to get back to feeling like I did before Graves’, but I never felt “bad.” Everyone’s experience is different but if you had a small dose, that probably means your thyroid uptake scan came back with a really high percentage like mine, and hopefully your recovery will be uneventful like mine was, too!

[gatorgirly]

in reply to: Can bloodshot eyes be about TED? #1181983

Sounds like that blood vessel may be harmless, especially if your eye isn’t otherwise protruded or painful.

Only my closest friends and family members noticed when the minor TED began. But they noticed it right away. Co-workers said it didn’t look bad, and people who I met for the first time didn’t think my eyes looked odd at all. In fact, before my orbital decompression, people would tell me, “You have such big, pretty eyes,” when in fact my pre-TED eyes were very small and squinty.

The swollen eyelids and very minor protrusion began in June 2010 (I was dx with Graves’ in February 2010). I first noticed it when I started a new job and had a photo taken for my work badge. It was not until about 14 months later that it became a problem with the immense pain, pressure, redness, swelling, and major protrusion. After the first couple of days on the steroids, my eyes receded slightly but stabilized and remained stable. I am told I was very lucky to have such a short hot/active phase (a matter of weeks), but my surgeon still wanted to be sure it didn’t flare up again so I waited a full year from the end of the hot phase to have surgery.

By the way, you shouldn’t need to come to the US to see a neuro-ophthalmologist. Nor do you need a fancy TED eye center. My surgeries were done by an experienced surgeon in a small metropolitan area and the results were astonishing.

[gatorgirly]

in reply to: Can bloodshot eyes be about TED? #1181980

I started on 50mg oral prednisone. I was on that dose for I think six weeks before we started tapering down by 5mg every couple of weeks. All said and done, I was on prednisone for six long months. I developed acne for the first time in my life, gained a ton of weight (~20lbs) and still have stretch marks on my love handles to show for it. But it was better than losing my eyesight due to optic nerve pressure, so ultimately the benefits outweighed the risks, even if I didn’t feel like it at the time.

[gatorgirly]

in reply to: Can bloodshot eyes be about TED? #1181978

Please don’t go to an optometrist for anything you suspect could be TED-related. Even during my active TED, I was still getting regular eye exams (I wear contacts/glasses) and the optometrists never even brought up what I considered to be visually obvious TED. Sure, they see lots of patients with lots of different eye issues, but when any thyroid disease is involved, you should be seeing a neuro-ophthalmologist, or at least an ophthalmologist trained in and experienced with TED (ask them how many of their patients have TED). OR, in some more rural places, an oculo-facial plastic surgeon who performs orbital decompressions – they can also do all the appropriate testing and diagnosing. When I moved from FL to western MA, a surgeon took over all my TED care even though I was still a year away from surgery.

To answer your question Raspberry, the baseline tests are the most important. That way, if and when your TED does become moderate or severe, the physicians have a way to see just how bad it really is and what has changed. I don’t know what their threshold of symptoms is for treatment, but we got on top of mine right away and oral steroids helped immensely with the severe swelling, redness and protrusion. Not enough, of course, as I did eventually have surgery, but enough that I could go back to a normal life (and even wear my contacts!).

Shakira, let’s hope they are all right and you don’t have TED. Still, you need to get to the bottom of the redness issue.

[gatorgirly]

in reply to: Please tell me it gets better #1181993

I too was diagnosed in my early 20s – as if that part of life isn’t hard enough. I felt like I was completely alone, living 1,000 miles from friends and family working my first full-time job (a job I hated) after grad school, and my then-boyfriend was six hours across state in law school. I knew two people with Graves’ but they were both women in their 50’s. I couldn’t connect with anyone my own age, or even close it. This site was helpful but it would’ve been nice to have someone in my area. Even now when I attend Boston support group meetings, I’m the youngest person in the room by at least two decades.

Like you, physically I was able to handle the symptoms. Being a lifelong athlete was a blessing and a curse. A blessing because I had a high tolerance for pain/sickness/injury and a “tough it out” attitude but a curse because I was VERY hyper and the meds weren’t working, and my heart gave me problems so I had to completely stop all workouts for about six months. That took a huge emotional toll, as did the eventual weight gain from steroids (for TED) and lack of exercise, the way my eyes changed, and just the general lousy response from most people: “But you don’t LOOK sick” when I had to bow out of social commitments.

It DOES get easier and I bet once you decide on a treatment (TT vs RAI since the meds aren’t working for you either), you will start down that road to feeling better emotionally, which is important to feeling better physically.

[gatorgirly]

in reply to: Can bloodshot eyes be about TED? #1181975

I had redness as one of my first TED symptoms. I too was told by two ophthalmologists that it was allergies or an infection. Please get to a neuro-ophthalmologist or someone who specializes in TED if you can. If the ophthalmologists telling you it’s not TED are your only options, push for some scans to rule out TED – visual field, MRI, and the thingy where they take pictures of the space behind your eyes.

Puffiness above and below your eyes is also a classic symptom.

[gatorgirly]

in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181806

I’ll third non-proptosis symptoms. My diagnosis came after seeing two separate ophthalmologists who prescribed me very expensive pills and drops for eye allergies and infections that turned out to be TED. I literally spent $100 on eye drops for an eye infection that did not exist. When I saw my endocrinologist a few days later for a scheduled visit, he knew it was on the onset of TED and got me in to see a neuro-ophthalmologist immediately, where I began TED treatment.

[gatorgirly]

in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181801

I wish my endocrinologist would have told me about the correlation between post-ablative hypothyroidism and the onset of TED. I was later informed by my neuro-ophthalmologist that if my endocrinologist had not allowed me to become severely hypo after RAI (even though it was only for a few weeks), my TED may have been much more mild or may not have occurred at all.

[gatorgirly]

in reply to: Blepharoplasty/decompressiom #1181771

I don’t think an orbital decompression can be done in an office, unless there’s a surgical suite in the office. It’s not an exam room procedure. Ask him to explain to you, and give you a copy in writing, of the procedure he is describing. My particular OD included the removal of both fat and bone (medial and floor), and I’m not familiar with any other procedure to remove the fat from BEHIND your eyes. Removing the fat from AROUND your eyes is a totally different story and I believe, is considered cosmetic and done by general plastic surgeons.

An MRI will give him a better view of what is going on behind your eyes and what surgical approach would be best. I’ve had two orbital MRIs but had an allergy to the dye they used on the first one, so the second one was done without contrast dye.

I am doing well. My eyes have given me no issues post-op except I notice that when I get (and I frequently do) sinus infections, I feel the pressure in my eyes more than I did before. I feel the pressure everywhere in my head, but of course I freak out when I start feeling “eye pain” after everything I’ve been through. Fortunately, it passes when the sinus infection heals.

Good luck!

[gatorgirly]

in reply to: Blepharoplasty/decompressiom #1181767

Hi J,

I had orbital decompression (OD) on both eyes in September 2012, and lowering of my upper lids in July 2013. Are you considering surgery to lower your upper eyelids? if so, that procedure is actually NOT a blepharoplasty but quite the opposite. A blepharoplasty is the raising of droopy eyelids. What I had done what simply referred to as “bilateral repair of upper eyelid retraction.”

Are your eyes still bulging? There is a pretty firm order that any good surgeon will follow, which is 1. OD 2. strabismus (if necessary to correct pre-existing double vision or double vision that occurs as a result of the orbital decompression) 3. eyelids. IF you are a candidate for OD, you never want to have your eyelids done before the OD because the OD will change how your eyelids fall.

What kind of surgeon did you see? The type of person who does ODs is usually an neuro-ophthalmologist or a oculofacial plastic surgeon or even an ENT, depending on the severity and surgical method used.

What kind of drops did you get?

I agree with Kimberly – I would suggest a second opinion if he was so quick to dismiss your concerns. I found my specialists using the ASOPRS directory so definitely check it out.

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