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TTTS at 15 weeks and really worried

(30 Posts)
SurpriseTwins15 Sun 28-Jun-15 21:55:06

I'm 15 weeks pregnant with identical twins and am being referred to Kings College London as I have TTTS sad and there is a 20% difference in size. Im going to speak to a consultant about my options, they have been quite blunt (which I appreciate but make me more upset) as the outlook is not good. I know I shouldn't but I've been googling and the results are terrifying. Has anyone else been though TTTS this early?

EmilyMaitliss Sun 28-Jun-15 22:57:09

Aw surprise I'm sorry. Have you been on TAMBA's website?
Keeping everything x'd for you. X x flowers

Magicalmrmistofeles Mon 29-Jun-15 13:23:42

Hi Surprise.

I was diagnosed with severe TTTS at 15 weeks at Kings. Had to have the laser ablation straight away. My twins are 4 in August and starting school in Spetember and are absolutley fine.

When is your appointment with Kings? Do you know what stage the TTTS is?

Please ask me any questions you have.

xx

nannyplumislostinspace Mon 29-Jun-15 14:55:32

The outlook isn't too bad. I had very severe TTTS and lost both twins a couple of weeks after having laser surgery, however my consultant told me this actually only happened in20% of cases severe enough to warrant surgery. 80% of cases at least one twin survives.

All identical twins have some degree of TTTS and only a very small proportion require surgery. They probably will just want to keep an eye on you. Good luck with everything flowers

SurpriseTwins15 Mon 29-Jun-15 18:19:29

Hi guys, thanks for the messages smile I'm still waiting on my appointment at Kings College London as the Dr I'm seeing, Dr Nicholaides, is in Crete on a conference atm. They are asking me to go for a consultation so they can decided how to proceed. My hospital sent the referral on Friday so I'm just waiting. For ladies who've had the surgery what was the timescale from appointment to surgery? And what was your recovery like?

nannyplumislostinspace Mon 29-Jun-15 19:51:31

I was referred at 13 weeks and monitored weekly. Had the surgery at 19 weeks. The actual op was fine. Not painful at all. It's keyhole and done under local anaesthetic. Very short recovery time.

SurpriseTwins15 Mon 29-Jun-15 19:56:47

Thanks Nanny that's good to know! I've never had surgery before so am a little scared and all the American stuff says weeks of bed rest so was unsure about it.

RueDeWakening Mon 29-Jun-15 19:57:24

I was diagnosed on the Tuesday and had laser ablation on the Wednesday Morning at St George's in London, it all happened incredibly quickly.

It was complicated by it being identical triplets, we had a single survivor who is 5.5 now smile

Magicalmrmistofeles Mon 29-Jun-15 21:49:02

Hi, Prof Nokolaides did my surgerysmile

I had the surgery literally within an hour of being diagnosed - I was lucky that I was under kings anyway and it was picked up in my routine scan. A case of right time / right place for sure. It was so severe neither of them would have survived without immediate intervention.

I terms of physical recovery - I didn't need any. I felt so much better once all the excess fluid had been drained 3 litres!). Some hospitals use a spinal block or even general anaesthetic - I just had a local so was up and around as soon as it was done. Had to wait 4 hours for a scan to check they bit still had a heart beat and then went home.

Emotionally, it was exhausting. I took a week off work and I actually now think the rest was really important.

Magicalmrmistofeles Mon 29-Jun-15 21:50:56

Also I'd try and stay away from the American sites, after my seriously extensive research they have quite different protocols to is, often using amino reduction and bed rest only, not so many hospitals offering ablation.

SurpriseTwins15 Mon 29-Jun-15 22:11:54

Thank you everyone for your replies you've made me feel a whole lot better. I'm a patient person but this is all really getting to me x

thelionsleeps Tue 30-Jun-15 12:39:42

Fingers crossed for you. I'm having id twins too and worried about this. Yes yes to not googling as everyone is different especially the American sites. I'm trying to tread a fine line between being informed but not worrying myself. At least they have picked it up and they will be looking after you. Good luck and let us know how you get on!

SurpriseTwins15 Wed 01-Jul-15 18:34:05

Thanks smile I have my appointment tomorrow at 12, so fingers crossed x

Magicalmrmistofeles Thu 02-Jul-15 10:31:27

Good luck Surprise.

Just a note - take snacks / drinks, most if not all of my appointments at the FMC were massively late and, if its feassible for you, take the train to Denmark Hill - parking is an absolute nightmare.

SurpriseTwins15 Thu 02-Jul-15 20:32:30

Hi ladies, Had scans and it is TTTS and SIUGR so waiting to hear if I qualify for the laser surgery as its their only chance of survival. Had to wait 4 1/2 hours for the surgeon but I've now had the procedure. All went well and now I'm having rest for an hour then l have another scan to see if it took x

RueDeWakening Thu 02-Jul-15 20:42:38

Good luck, hope you get good news later x

neversleepagain Thu 02-Jul-15 20:43:36

Thinking of you, all the best xx

Mousybrown Thu 02-Jul-15 20:49:22

Hope it all goes ok for you, we had ttts but with a 30% difference in size but we were too late for surgery as we had passed the threshold and I had them early at 30 weeks but they have done well and will be 11 next month. I will be keeping my fingers crossed for you.

FructoseTart Thu 02-Jul-15 20:49:23

Hope everything went well for you OP

Magicalmrmistofeles Thu 02-Jul-15 20:51:36

Thinking of you xxx

thelionsleeps Thu 02-Jul-15 20:53:30

Thinking of you and really hope all is ok x

SurpriseTwins15 Thu 02-Jul-15 23:31:20

Thanks guys! Finally on my way home after a mammoth day. Second scan showed 2 heart beats and no leaks so safe to go home. Have to go back for a scan next week, but to Basingstoke not London. Feeling quite tired as today has been so draining but we've done all we can do, it's now down yo them to sort themselves out x

Magicalmrmistofeles Fri 03-Jul-15 09:58:40

Fantastic news!! I can't remember the statistics but they are really good if they see those heartbeats after the laser.

Take it easy now, rest as much as you can x

SurpriseTwins15 Fri 10-Jul-15 11:43:52

Unfortunately I have some sad news. The odds were not in our favour this time and we unfortunately lost the small baby, we now have to wait to see if the other baby survives as my body may think I have no baby so will miscarry the healthy baby or the big baby may be strong enough to fight it. I have to go back next week for a scan to see x

TwinsPlusAnotherTwo Fri 10-Jul-15 14:05:49

Really sorry to hear your news, take care of yourself. x

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