So, what is surgery like…

First of all, I did not go for a mid-line (middle of two front teeth). The list of complications outweighed the benefit for my particular situation. I did a semi-hemi 🤣
First braces and braces and braces and once you’re aligned, molds. Then surgery. My orthodontist put enough space between the two teeth selected by my surgeon so a little bitty bone saw could fit in.

Honestly, not that bad. (I know this sounds crazy to most, but it’s really true). The worst part is being tied-shut for a week. Not being able to open your mouth to speak messes with your brain. The splint for a month is frustrating— no one can understand you. You can’t text them fast enough. You’d think they’d have some patience or understand. My miming that I need a glass of water….and don’t forget the straw! – clearly would not earn me any poker money on a subway platform.

Then the splint was taken out early for RAF. Regional Acceleratory Phenomenon.  Because my awesome orthodontist knew this technique she was able to align my teeth faster. It’s actually pretty interesting so I’m providing you a link.

I thought I’d drink a lot of smoothies, but really, it was winter and I preferred soup, once I could suck through a straw. Before that I really just survived on Kavita’s. Yes I lost up to 12 pounds but it was water weight… Short-lived. Booo.

My teeth were awesome with braces, rubber bands and RAP. Without the rubber bands they moved all over the place. Hmnnnnn. Let’s start thinking on this….

So, back to the things that grew… my tongue grew. Just like my jaw grew on the right, my tongue grew on the right. Ever learn how powerful a muscle the tongue is? It’s a bummer, but I’ve learned a long time ago to go with the flow… once you find doctors you trust! So my awesome orthodontist built a wall into my nighttime retainer to hold my tongue back and sent me back to the surgeon.

Next on the list shrinking my tongue. Yep. It can be done. Kind of crazy. And much better option than cutting my tongue because that just makes my stomach turn and not many things do that. They can do radio frequency (RF) ablation which is basically shocking your tongue. Because of scar tissue the tongue shrinks. Fascinating, right?

 

If I do nothing my surgery is ruined and 4 years down the drain for nothing. If I have my tongue cut (which sounds like the most awful thing ever) the re-growth percentage is too high. But my option for my “fat tongue syndrome“ is a little electrocution while under anesthesia… I am so in.

They’re working on insurance and I’m hopeful it will be approved soon. The scar tissue forms at 8 to 12 weeks and if you need more shrinkage they repeat the procedure. I’ve been through so much already this is an easy one.

One thing with acromegaly… Things that go wrong just keep evolving. So I keep evolving with it and keeping a sense of humor. So I started calling it “fat tongue syndrome” 🤣 which is how I emailed my orthodontist and my mom. My mom called and asked “that’s not the real name, is it?!” No, silly I made it up… Which she figured. My orthodontist just gets a kick out of me and as I keep saying, she’s awesome. She thinks we should call it “big fat tongue syndrome” which would be BFTS for short. Seriously you got to have a good sense of humor otherwise you’ll drive yourself batty.

Acromegaly is too much growth hormone. Or too much GH. You need an extra dose of good humor when you have a rare disease and people think you’re crazy  because now I tell them I need my tongue electrocuted…. my saga continues as does life… so make the best of it and never forget to laugh!

If you were to download the Health Storylines App Use my link to download the app! I’d love to hear what symptoms your tracking. Sometimes the symptom might not be available and if you let me know, we will have it added, because this is for all of us with acromegaly. You could also use the journal function and read it back to yourself after a month or two or three and realize something major or something slight but if given enough information maybe you can catch it early. My goal is to help you catch things early which allows less stress on your body. We are all so different with acromegaly but there are certainly crossovers. Imagine if we could help each other and minimize the damage that is irreversible? What an amazing world it would be.

 

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