[gatorgirly]

in reply to: Proptosis recurrence 3 years after OD #1184358

Just wanted to post an update – I am 12 days post-op and doing well. The mucocele was removed and my eye is noticeably better. No redness or watering, and the proptosis is greatly reduced. The surgeon who performed my surgery does routine ODs as well, and said I still have a lot more bone than he expected – he would have taken out more if he had done my OD. As such, he said that the proptosis in my right eye may never fully resolve and may explain why I’ve always felt it wasn’t symmetrical with the left eye. It’s only noticeable to me and doctors who specialize in this, but may be something I elect to correct with a minor eyelid repair down the road.

For now, I am just glad to be over the worst of the recovery. I also had my deviated septum repair and my middle turbinates reduced, so it was a pretty extensive surgery that required 10 days of bedrest due to excessive bleeding. Hopefully no one else has to deal with this issue 3+ years after an OD.

[gatorgirly]

in reply to: Proptosis recurrence 3 years after OD #1184355

I saw a regular ENT surgeon on Tuesday. We reviewed my imaging scans, my symptoms, and the treatment (surgery). But she admitted with my previous OD, this was a more complex case than she was equipped to handle, and recommended seeing a surgeon who focuses on complex sinus surgeries involving the eye or brain. I was frustrated, but glad she admitted it was too complicated for her. Within 48 hours, I was at Massachusetts Eye and Ear Infirmary (a Harvard Medical School affiliate and the top-ranked specialty hospital for ENT in the nation. The surgeon showed me my scans and explained them in greater detail than the neuro-ophthalmologist and ENT had, and said he was completely confident in his ability to drain the mucocele with an 80% success rate (I guess these things are stubborn and there’s a chance it will fill back up again, in which case he’ll just go back in and drain it again). He said while he is in there, he will also correct my deviated septum and reduce my middle turbinate to create more space in my nasal cavity and sinuses so that hopefully these recurrent sinus infections become far more infrequent. He expects the proptosis will be resolved immediately during surgery. As for the watering, he said it should also be resolved but that the mucocele and resulting proptosis could be pushing on my tear duct and that may need to be unblocked separately (it’s a 2-minute procedure in an ophthalmologist’s office). I’m looking at a significant recovery time due to the three concurrent surgeries (ethmoidectomy, septoplasty, turbinectomy) taking place, but nothing like the OD (his words, not mine). I’m scheduled for surgery on April 13 with a post-op on April 21.

PS – Hi Shirley!

[gatorgirly]

in reply to: Proptosis recurrence 3 years after OD #1184352

mtfantham – which doctor are you seeing? Was an ENT surgeon also involved with your OD? How long ago were you diagnosed with TED and how long were you in the hot/active phase?

The bottom line is TED is pretty obvious to a trained eye (no pun intended), but even my neuro-op thought it looked like TED, so definitely request the CT to determine what’s going on behind your eye. If it is TED, they need the CT anyway to see how much the muscles are enlarged and if your optic nerve is compressed.

I am meeting with my ENT surgeon on Tuesday so let’s both plan to report back with our appointment results!

And for anyone who is wondering, I am happy to share the peer-reviewed articles I found about the other post-OD patients who then developed sinus mucoceles that caused eye bulging.

[gatorgirly]

in reply to: Looking to find a endocrinologist familiar with Graves disease #1184126

Hi Cindy,

It’s been a long time since I looked at this forum or posted, but I’m glad I did. I was treated in Ft. Myers for several years, at my sickest point. My doctor was amazing and I miss him now that I’m living in Boston. I’ll PM you his info right now.

[gatorgirly]

in reply to: Frustration #1183852

It took a full six months for RAI to work for me. My TSH skyrocketed when it did finally work, but it was a welcome relief to know it wasn’t all for nothing. Be patient, and maybe it will finally kick in for you soon! If not, just know that there’s no reason why you can’t do it again with a higher dose, or you could always consider a thyroidectomy.

[gatorgirly]

in reply to: TED – treatments? #1183846

I haven’t posted here in a long time but just wanted to say you’ll be in really great hands at MEEI. I live in Boston and have gone to several of the support group sessions Kimberly mentioned, as well. The MGH and MEEI doctors who join us are great!

There isn’t enough research about thyroidectomy vs. radioactive iodine in order to base your decision on what might happen with your eyes, but it will be good to establish a baseline and have an ophthalmologist who is experienced with TED give you some recommendations. They should also carefully review your endocrinology records and if possible, discuss your treatment plan with your endocrinologist. Since you haven’t chosen a permanent treatment yet for your Graves’ (and sounds like you will have to – I too had a very tricky thyroid and so I couldn’t stay on meds, ended up doing RAI…and unfortunately getting TED six months later).

What you might expect at the appointment:
Discussing your thyroid history
Discussing any changes in vision, eye problems
Typical vision tests
Visual field test – you sit at this dome-like machine and it tests how much peripheral vision you have, and checks for any “blind” or weak spots
Exophthalmometer – a tool that measures how much each eye protrudes
Eye pressure test – just that puff of air into each eye
Optic nerve imaging – kind of like a photo of what’s behind your eyeballs
Photographs from a few different angles
Being sent for more labs – some doctors want to run their own or check different

The last two are the best way to track changes in the actual eye protrusion, and if they are not offered to you, you should ask for them even if the doctor thinks you do not have TED.

Good luck!

[gatorgirly]

in reply to: Finally scheduled for OD surgery! #1183048

Certainly we aren’t comparing apples to apples when we talk about our eyes and our TED severities, but I was told my OD was one of the most extensive either of my surgeon (oculo-facial and ENT) had ever done. I know I had a more difficult recovery than most people, but I am truly glad I had both done at once even if one at a time would’ve been easier. I don’t do well when I’m told to sit still, rest, don’t lift, etc.

Nonetheless, surgeons and patients decide together what is best and caffer you will do just fine! Your recovery will likely be a lot easier only dealing with one eye at a time.

Thanks for asking Shirley – I will send you a quick PM and also keep my eyes peeled for another conference on the east coast. I’m in Boston now.

[gatorgirly]

in reply to: Finally scheduled for OD surgery! #1183046

My proptosis before surgery was 23mm in the left eye, 25mm in the right eye.

[gatorgirly]

in reply to: Finally scheduled for OD surgery! #1183042

Congrats on making the next step! Any reason why you’re having them done separately? I know plenty of people do, so I’m just curious as to your reasons. I chose to have both done at the same time so that I only had to go through it once, but I had (and needed) SO much help afterward. My dad and brother waited on me hand and foot for the first 72 hours as one eye was patched shut. They wanted to patch both eyes but knew I couldn’t deal with that so they stitched only the one that required more extensive work.

I was “strongly encouraged” to stay overnight, but they allowed me to go home on the condition I not to try get out of bed at all without help for the first 24 hours. In retrospect, I probably should have stayed overnight because I was really sick from the anesthesia and know I was a big burden on my family. You’ll feel better knowing you have round-the-clock care by people who do this every day

Good luck! It is a long, difficult journey but you’re almost there!

[gatorgirly]

in reply to: Yikes! The OD is scheduled #1182940

Congratulations on the surgery date. Every surgeon, patient and surgery are different, but my medial walls OD were done endonasally (just like sinus surgery) and I absolutely needed a NetiPot. My nose bled a lot the first few days. My orbital floor was done through my lower eyelids, so that’s where all my bruising came from – hoping you are free from bruising and swelling like he promised!
I say this is definitely a positive. My OD was about a week-and-a-half before my birthday, but I looked at it as a new age with new/my old eyes!

[gatorgirly]

in reply to: OD questions–confused #1182870

I can’t speak to that, as my pain resolved when prednisone took care of the massive swelling. However, I would imagine that for you, OD will create so much extra space that the pain should be eliminated. Another good question to ask the surgeon. Of course, you might experience quite a bit of pain with the surgery…although some do not (snelsen!) even need the pain meds.

[gatorgirly]

in reply to: OD questions–confused #1182869

Oh! Thanks for the reminder! Pre-TED photos are SO important for your surgeon. Mine actually brought one of mine into the OR with him to make sure he took out enough fat and bone to return my eyes to their pre-TED state. Looking at me before surgery, my eyes didn’t seem that bad to strangers. I was always complimented on my “big, pretty eyes” but they were my eyes – I always had very small, squinty, deep-set eyes and my surgeon was shocked when I showed him my headshot from before TED. Happy to report my eyes look almost as small and squinty now almost 2 years post-surgery!

[gatorgirly]

in reply to: RAI vs Surgery #1182898

Yes, I get keloid scars with any major incisions, therefore I would almost certainly have had one on my neck from a thyroidectomy.

[gatorgirly]

in reply to: RAI vs Surgery #1182896

I initially wanted surgery as well, but being that I was 26, no surgeon felt comfortable operating on someone so young and otherwise healthy, given all the risks that surgery came with: vocal cord damage, parathyroid damage, keloid scarring (I get these, not everyone does), and all the obvious but rare risks that any surgery carries. I listened to their concerns and suggestions, and combined with the two vastly different recovery processes, chose RAI which was right for me at the time. For me, RAI was easy and uneventful, though it took my stubborn thyroid six months to die. I was VERY hyperthyroid even on ATDs, so no one expected the RAI to work instantly.

Not sure which doctor you’re suggesting you need to convince, but if the surgeon you’re talking to is adamant against surgery, then he is either not the right surgeon for you or maybe you are not considering his valid concerns for not wanting to operate.

You said you can’t tolerate MMI – what about PTU? I took that with no issues, aside from the fact I needed enormous doses but that’s because my levels were off the charts, which would’ve been the same with MMI.

Whatever you choose, the end result will be so much better than how you feel right now. They are just two different ways of getting there.

[gatorgirly]

in reply to: OD questions–confused #1182867

Also, your surgeon may not mention it (mine didn’t, but snelsen did!), but you’ll want to raise the head of your bed. I put the head of my bed frame on blocks, and also put pillows under my mattress. After my surgery, I slept with what they call a “boyfriend” pillow. It’s that really 80s-looking pillow that has two short, stubby arms. I propped that and my regular bed pillows all around my head so that I could sleep almost sitting up, but it was such a cozy cocoon that I felt like I was sleeping in a cloud. Made a HUGE difference despite my pain and discomfort (and gushing blood any time I leaned too far forward).

PM’d you a link to my blog

[Author]

Posts