TTTS Laser Surgery: My Experience and What Happened
Whew. TTTS laser surgery was something I knew we might need since the topic first came up around 16-18 weeks, but I didn’t think it would be so soon.
I read a few other posts I found online about the surgical experience of others (this one was particularly helpful), because I’m someone who likes to research and know things and avoid surprises. I couldn’t find a lot out there, though, so I decided that I would write about my experience and share that too, once it happened.
Well, spoiler alert: I didn’t end up getting the laser surgery.
Right up until pre-op, I was going to. It was literally 5 minutes to the booked time in the operating room when it was called off, for a few reasons.
I wrote the below post in parts, while I was in the hospital and while things were happening. I hope it helps you be more prepared if you’re going to be getting the TTTS laser surgery soon, even though it didn’t end that way for me.
My Biggest Fears Going Into the Hospital
I’ve never had surgery before. I was nervous from the moment I found out the surgery was a likely option for me. Of course, I would go through any pain and any discomfort for these babies to be healthy, but it doesn’t mean I wasn’t scared shitless, ok!
Here were my biggest fears going into surgery, and what actually happened. If you have the same fears, this may be reassuring (or not lol).
1. Wearing underwear.
OK this sounds stupid but I was actually wondering, like, do I wear underwear under my hospital gown? No. You are not allowed to wear anything underneath. And yes, it did have the little ties in the back by my buttcrack, which I found nearly impossible to do up with an IV in my arm (twisting my wrist hurt).
So this part sucked, for real. Although a hospital gown is still more comfy than wearing too-tight pants near tha bump. #twinmomprobs
2. Getting an IV.
I’m not afraid of needles but it’s not like I love them either, right? I was worried about the whole hospital THANG – being in a bed, being trapped somewhere, people seeing my lady bits, going to the bathroom, getting an IV, medicines… but really, all the nurses are there to help you. Everyone made me as comfortable as possible and were so reassuring and nice. That goes a long way!
But yes, getting an IV hurts. A lot. That’s life.
3. Bathroom time.
So, I like to shower every day. Spoiler alert, that doesn’t happen the morning of surgery. That’s okay, I realize I’m there for a life-saving surgery, not a spa day. But then there’s other bathroom stuff… and I was worried I wouldn’t be let out of bed at all. You’ll be pleased to know you can get up as you please to use the bathroom! Whew!
My room even had its own private bathroom which was unexpected and so nice! (Thank you, Canadian healthcare system.)
4. Pooping during the operation.
OKAY don’t make fun of me!! We’ve all heard those stories of women pooping during labour. In that case, I assume because of all the pushing. Not like I’d be pushing at all during my surgery but I was still worried. In my case, they talked about giving me an epidural since I couldn’t comfortably lay on my back (due to low blood pressure/fainting), which is required for the surgery.
People who can lay on their backs just get kinda loopy medicine to sedate them. I was sooo worried about getting an epidural and having my lower body be numb. Not only for the not moving part, but also the, “Will my colon relax and I’ll shit myself in front of all these amazing doctors I see twice a week?!” EEK.
I can’t really answer that because the surgery didn’t end up happening (more on that below), but I think it would be unlikely. Comment below if you shit yourself and tell me otherwise, ok. 😂
Here was me right before heading to the hospital, at 22 weeks 5 days with my twins.
The Day Before Surgery
I checked into the hospital around 6pm. The nurses were all so nice. They checked me into my room and I waited til around 7:30 to get some blood work done, my IV put in (ouch!), forms filled out and other admin-type stuff.
I was not expecting such a nice room! It was bigger than my last apartment. Ha ha. Ok but really in Vancouver, it could go for like $2,000 a month easy. I even had my own bathroom! With a shower! And there’s a water machine outside. It felt so nice and private!
The only part that was really horrible was getting an IV inserted but I feel like they are just horrible in general. It’s on the side of my wrist and typing this out on my phone hurts. There was something wrong with the first one so they had to do it again. I’m afraid to say this one hurts in case they wanna do it a 3rd time. Eek.
Maybe I didn’t drink enough water? Pro tip: before getting to the hospital, drink a shit ton of water!!
So now I have two bum wrists that both sting. Maybe it will go away after this chocolate bar. I have 2 more hours to eat!
One of the surgeons came to talk to me and so did the anaesthesiologist to talk about sedation tomorrow. Apparently, you need to be awake during the TTTS laser surgery procedure because they ask you to hold your breath as they laser each vessel connection. Yikes!
They also gave me my gown for tomorrow. At first I couldn’t figure out how to snap it up. 🤷🏼♀️🤦🏼♀️ My husband had to help me figure it out so it was ready for tomorrow. It was seriously like a f’n jigsaw puzzle, ok.
Also another pro tip: Bring pajamas! I assumed I’d be in a hospital gown the whole time so I just arrived in my standard preggo outfit: black leggings, black t-shirt, black sweater. I ended up sleeping in those clothes, and going home in them the next day. So, bring clothes and PJs!
OK and one funny thing about my hospital room: they gave me some soap like this. It was by the sink. UMM. Could we not just get a different container for that?! It was even yellow-tinged. I LOLed. (There was also a soap dispenser on the wall so I am not sure why this was even there?)
The Day of Surgery
The hospital ward was very quiet but I still didn’t sleep well the night before. I was so nervous. A nurse came in at 6am to start my IV fluids. That didn’t hurt, but I didn’t go back to sleep after.
At 8am, I went down to ultrasound to start the pre-op mapping. All 3 surgeons were there. Once there I could barely lay down without fainting at all so I was worried how the surgery would go since I would have to be still.
I think part of it was the low blood pressure I experience when laying down, and also at this point I was fasting from food and water for over 12 hours. And, I think anxiety and stress played a role too.
Spoiler alert: A panic attack and a low blood pressure fainting episode feel the exact same. Fun!
I was not able to eat again until around 2pm, so this feeling continued throughout the day and really messed me up. It took me until Tuesday evening at home to recover fully and feel “normal.”
Anyway, on the scan, the surgeons were surprised to see A’s feet so high up in my chest (near my ribs, with B’s feet close by which explains all my rib pain lately since both of them were kicking the shit outta my right ribs!).
That meant the inter twin membrane was in a way different spot than they first thought!
And, unfortunately, it meant we could not proceed with the laser because the membrane was less than an inch from the only site they could enter into, due to the position of my anterior placenta.
I was gutted. This is the only treatment that actually cures TTTS in utero, if successful, and has been linked to the best long-term outcomes compared to amnioreductions.
Without it, what would we do?
After getting cleaned up, we sat down to talk with the doctors who explained our options of seeking a second opinion for laser elsewhere, or doing a decompression (amnio reduction). They spent time going over studies and data with us and all our questions which was so nice, even the one surgeon who had already been at the hospital for over 28 hours!
In the end, we did seek a second opinion from Mount Sinai Toronto, via phone. Of course that does not replace an in-person exam but they said they agreed with my doctors plan and would not recommend laser surgery currently for me either due to the risks of entry, and that it may not be successful (may not be able to access and burn all the connecting vessels).
Again, I was upset and felt a bit hopeless.
I did really appreciate my doctors going over the studies and mentioning how, in 4/5 cases of the laser ones, those patients had uncomplicated posterior placentas. My anterior placenta made it trickier, and having the inter-twin membrane so close to the only point of entry made it impossible once they found that out.
I appreciated both their advice, willingness to discuss the data with us, and ultimately helping us arrive at a good treatment plan (serial amnioreduction until delivery).
The Plan Going Forward
Because I am 23 weeks now, our plan is to wait and see how things go. My twins are still Stage 1 and other than the fluid discordance and a small size difference (under 20%), they are doing fine.
I was offered an amnio reduction today but declined as I want to try and wait a few more weeks if possible (as labour occurs typically 7 weeks after the first reduction). I am suffering lots of pain, heartburn, vomiting, fainting and general discomfort in everything I do but I want to hold out for my boys as long as I can. ❤
I go back in a few days for another check.
What a whirlwind!!
I am now back at home, cuddling my dog as I type this on my phone from the couch. Staying positive and hoping my boys continue to stay healthy, strong and in my tummy!
There is never a “safe” day in a twin pregnancy complicated by TTTS, and I know the worry will always be there, but a positive mindset can make so much difference.