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DD has nightmares about surgery

9 replies

ForgotMyMNLogIn · 07/05/2018 16:41

I've posted about my DD and her upcoming spinal surgery for her scoliosis. Obviously, I forgot my log in but I will still fill in you if you hadn't seen which probably is everyone! Blush

So my daughter has severe kyphoscoliosis, last time it was checked it was 100 degrees and 75 degrees in the thoracic part of her spine. She hasn't had an x-ray in over 2 years so we hope it hasn't increased too much.

She was meant to have her op in June 2016 but they found subglottic stenosis (windpipe narrowing) and they couldn't get the breathing tube down her throat so had to postpone it. She was referred to ENT and was told she'd get an appointment in "2-4 weeks". Obviously, my daughter knows that would more likely translate into 2-3 months at worst so she got on with her AS exams and had a lovely summer.

We didn't get to see ENT until 10 months later after badgering ENT and getting her neurologist involved. Here's the plot twist, she got an appointment but it was in the wrong clinic. Twice. We were told to go to ENT thinking it would be a paediatric ENT when really, it was the ENT cancer clinic. First time, we were turned away, apologised to and told we'd get a proper appointment.

The next time, that ENT doctor called us in and told us that we've been booked into the wrong clinic. DD, bless her, bursted out crying because she'd been waiting so long only for this to happen. The doctor told reception to book an appointment for the next week in the right clinic with the right doctor. That time it worked and we were seen for 10 minutes. DD was slightly annoyed but relieved that she'd finally been seen.

Now, we've seen ENT again and she's signed the consent forms for tracheotomy whilst she has her spinal surgery and for the recovery after it. She was given a date and she'd been preparing herself mentally because it'd be a long road to recovery - think 4-6 weeks in hospital and possibly another 4 recovering at home.

The next day, she was seen by her spinal surgeons and told that it would not happen on that date as it was too soon and instead she'd need to wait for the new strategy now that she will have a tracheotomy as well. She understood that but was still gutted.

DD has been having nightmares and dreams about surgery being cancelled, going wrong, going well and having a straighter spine. It's been all sorts but I'm worried about her. She googles what's going to happen but strangely, she's not fazed by it.

She's very nervous in comparison to her great confidence the first time round. She's not worried about the risks as such because she's been informed about it since she was 5 when it was first discovered but she doesn't want to get her hopes up until she actually wakes up in ICU and knows the surgery has happened.

Normally, I'd say she'd need some sort of holiday abroad to relax and forget about it but she has appointments in the summer, one being with the spinal surgeons. So, I'm pretty much stuck and it's not nice to see dd like this.

Sorry it's so long!

OP posts:
ForgotMyMNLogIn · 07/05/2018 17:04

bump

OP posts:
MatildaTheCat · 07/05/2018 17:14

What an awful position for her to be in. I had some quite major orthopaedic surgery as a pre teen and that was disruptive enough. Your dd is clearly fully aware of the real risks and yet knows she has little choice. In that position anyone would want to get on with it yet that’s not possible. Not nice.

So inevitably the surgery is on her mind pretty much constantly. Even when she’s engaged with something else it will creep in ( another incident of my life has taught me this). She won’t tell anyone every time a thought about the surgery crosses her mind but it will be right at the front of her mind. The dreams and nightmares are very understandable. ( I have actually just has a palpitation as this is so similar to my situation).

I have had counselling with good effect and have twice learned mindfulness which I try hard to practice. I also try to practice Alexander Technique constructive rest using a download to talk me through. It takes about ten minutes and is good for back pain and any tension.

Listen to her, encourage her to talk and share any fears. Don’t try to hard to reassure her rather listen and keep listening. Her fears won’t go until the surgery is done. The whole episode will be a massive episode in life. I do hope it isn’t too long a wait and all goes smoothly.

yawning801 · 07/05/2018 17:22

Can you put her in touch with some people who have been through what she's been through? Scoliosis is very common amongst teenage girls, so there's likely to be lots of them around who will give her advice and listen to her worries. There's a Facebook group too. It's hard to take her mind off it, but make sure she stays socialising and doing what she loves until her surgery. And remind her that the outcome will be a new back and plenty more opportunities, plus the disappearance of this ginormous worry!

yawning801 · 07/05/2018 17:29

This book may be of use? I haven't read it myself but...

What about this one?

treeofhearts · 07/05/2018 17:29

Does your DD work in a shop starting with B by any chance? I think I know her. If she is who I think she is then don't worry, she is a tough cookie, just getting a bit sick of living in limbo and wants it all over and done with but she could probably do with some help from a GP with her anxiety.

ForgotMyMNLogIn · 07/05/2018 19:17

DD doesn't work but what you have said does apply. I wish that girl all the best Flowers @treeofhearts

@yawning801 Yes, I think she'd benefit from one of them books whenever she feels like she wants to google other people's experiences. She's noted that there aren't many blogs online about scoliosis from the UK. Most are American and pretty outdated. I think she might be interested in starting one nearer the time of surgery.

I never knew there were facebook groups. Do you know any? I reckon it would do her some good because she really doesn't socialise or get out much due to severe pain. I've just seen Scoliosis Association UK and I think I'll pay for the membership which has a forum.

@MatildaTheCat I agree with everything you've said. DD is always thinking about it and she always get told by siblings and I to just avoid thinking about it and that it'll be okay. I'll change that up to just listening to her.

I do think she feels like it's held her back from planning things. Whenever she got a big volunteering opportunity before she got the second date but she had to cancel it all only to be told it wasn't happening. I'll point her to the direction about mindfulness and the Alexander Technique and see if she is alright with the idea. She currently uses food as a small crutch when she's down but I hope this changes her mind!

OP posts:
ProfYaffle · 07/05/2018 19:32

Your poor dd, it's very hard to live with that sort of uncertainty. My dh has an totally different condition but we've experienced similar delays/cock ups in his treatment. The 'life on hold' feeling is awful.

In addition, my dd2 had major surgery last year and is currently going through trauma therapy to help her deal with what happened.

The therapy has been transformative. I've been 'vicariously therapised' as I call it as I attend dd2's sessions with her. Dh hasn't had anything. The difference is how we're coping is profound. I'm nagging dh to find his own therapy. I wish we'd done it years ago, it's helped me hugely. His annual surveillance scan is coming up, he's struggling to cope but I actually feel OK about it.

If you can't access nhs therapy (can be difficult, we were referred in Oct 2017, still not heard anything) there may be local charities that do it at a reduced rate or if you have an employee assistance programme at work they may provide it.

ForgotMyMNLogIn · 07/05/2018 21:28

@ProfYaffle I'm not too sure whether it's available for dd but I'll have a word with our GP and dd. She might not want to but it's worth a try

OP posts:
yawning801 · 09/05/2018 19:25

I PMed you yesterday OP Smile

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