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My spine surgery journey: from preparation to recovery

Thread starter #1
I'm having scoliosis surgery next year. Probably April-ish. So pre-op day will be some time before then.
My parents will be looking after me post-op; I'll probably need to stay with them for about 6 weeks.

They, nor anyone in my family, know about my PTSD (or causes), MDD, or GAD.
This is probably my biggest fear in life - them finding out.
I attempted suicide earlier this year because given the option of death or reaching out to them, I chose death without question.

It's so hard to explain why that is. It's just an undeniably intense feeling. Other people knowing my mental illnesses is ok. Family, definitely no. I've had a lot of therapy around this, and none has made me budge even slightly.

I realise that putting myself in their care post-op is going to mean that I am heavily reliant on them and that they will pick up on -some- indicators of mental illnesses (e.g. the fact that I'm on max doses of 2 antidepressants, and also take an antipsychotic and insomnia meds and an anxiolytic as PRN), but I had thought I would play that off by saying they were to calm my system down because of my tremor (part truth - venlafaxine does help), and to help me sleep (still v difficult to think about saying but physical "illnesses" seem much easier to admit than mental ones).

I thought that I could go to my pre-op day by myself.
Taking control of my own health is something that's very important to me, as it was one area where my ex completely controlled me, and I have no issues with medical procedures, nor with talking to medical professionals.
I'd even spoken to my GP about it and she had no issue with me going to that appointment by myself.

Then I just got a text from my mum:
"BTW I'd like to come to your preop and meet the team. No doubt dad would too".

I feel like I'm going to throw up. I want to crawl into a hole and no longer exist.
It's going to be a f*cking minefield of mental illness talk.
Help. Insight. Anything. Please.
 

Sietz

MyPTSD Pro
#3
I'm not really sure I can offer much help.. But thinking about this with two scenarios in mind:

a) Your parent's aren't supportive overall and can make you feel worse about the whole thing.
In this case, it's definitely best if you say "No, it's okay to go alone, but thank you."

b) Your parents want to be there for you, like regular parents want for their child.
And in this case, I wonder that if you just don't accept people in your life caring about you to help. Parents are the carers, and they can make you feel supported, inner kid stuff too, and inadvertedly (sp? can't english) help you take a step forward in accepting support after Z's abuse. You don't need to tell them about it all, if you don't want to. You can say "You can come to support me, but I go to the appointment alone" for example, if that means them not knowing about the mental health situation.
You're not a failure to your parents for having mental health issues and having gone through abuse, if this is the "supportive case".

Just think that sometimes we do know that not all our coping mechanisms are good for us. If b) is the case, then I really think you need all the real life support you deserve, particularly from generally supportive parents.

Sorry if I'm way off base. :hug:
 
#4
((( @bellbird )))
I am sorry that you have to deal with THIS fear on top of the natural anxieties about surgery. When I was 16, I was surprised and told my teacher, who came along with my BFF to find me. I threatened to hurt myself if they told my parents...

If/when you get called about the pre-op appointment, that would be a big a good time to ask if there's a way the nurse or tech can help out by telling the parents that the Dr prefers to see the patient alone first and tell them they can come back in a few minutes. The privacy laws are really helpful, too. Just don't write them down as people who are allowed to know your condition.

When I was in nursing, we did that for girls who came in for their yearly female exams and for birth control. We knew they were probably not going to be 100% truthful if the Mom was in the room. I would have told the parents that I would call then back when the Dr was ready to meet them.

Another thought. You can write a small note (in an envelope) to give them when you check in for the appointment, to put on/in your chart, requesting they "maneuver" things so that your parents don't get back there. The "provider" can't tell them anything that you don't approve of, and when allowed in, they can ask your parents if they have any questions. I don't know if either of these things are helpful but I hope so.☺️

The medical world isn't like it was when I started out. It was personalized and our patients were important to us, and there was continuity of care. Now, you don't get to talk to the nurse who will check you in, because you are calling a "call center" to make appointments. That's the tip of the iceberg.

Blessing and hugs to you💟🤗
 
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Thread starter #5
@tryingtocope18 @Sietz thank you for your responses! They were really helpful to read.
I went to sleep soon after my OP. I had to take my sleep meds because I was way too stressed to deal with being awake.

Feeling -slightly- better this morning.
Had an appointment with my GP where I discussed this with her.

We've managed to come up with an approach that is middle ground ish:

I can understand why my parents would want to be there; it is a major surgery, they're being parents, they might have questions for the medical team of their own, and they probably want to meet the people who are going to be cutting my side open and putting rods and screws in my spine. So as much as I would prefer to do the whole day myself, from a rational point of view, I can't expect for them to be my post-op carers and not have that opportunity.

Which means that they should be there for the appointment.

BUT (big but):
I am still very far from feeling in a position where I wish to tell them about my mental illnesses, and having it revealed in an orthopaedic appointment (where we wouldn't be able to just stop at "I have PTSD, MDD, and GAD", the causes for PTSD would come out too (they did in my clinic appointment), is not the time or place.
But thinking about this with two scenarios in mind:
I think they fall somewhere in between your a and b.
There have been several instances in the past where I've remarked something about "I feel nervous" and my mum has completely shut it down and then conversation has gone no further. Like "no, you're not nervous".
I love them. And it feels awful saying these things. But that's what it has been like every time. Extremely invalidating.
I can't even imagine saying the word "anxiety" around them, let alone depression or PTSD.

SO.
given that a) I am an adult, and if I choose to keep my health between my medical team and I, then I have the right to do so.
and b) there is no safety concern (both mine and my GP's words), then I will need to let them know that they are welcome to be there and "meet the team" (my mum's reasoning for coming, afterall), and ask whatever questions they have directly.
But, all other aspects of the day I will do alone. And they will just need to accept that.

Next week when T is back, I will talk to her about a letter that I can write in advance to inform my surgical team that this is a sensitive issue and that I ask they respect my confidentiality. My GP will write a cover letter, supporting this. And we will send it off to the orthopaedic team so they are forewarned.

THEN.
I will let my parents know when I receive my pre-op appointment letter (probably next year some time), that they are welcome to come along, but that aside from them meeting the team and asking questions, I would like to do the rest of the day on my own. I can tell them that the bottom line is that I am OK, and that I am an adult and this is something I want to do. Also that Sam took away a lot of my medical autonomy (my mum is partly aware of this) and so it is even more something that I value for myself.

Between now and then I'll just leave the matter as it will seem strange if I'm making grand arrangements to my parents 4/5 months in advance.

On the day of the appointment, I'll tell my parents I'm going to speak to the team first on my own, just so I can give the team a verbal reminder about my confidentiality, and then we can see them together after.
GP said I'll probably have pretty thorough physical examinations anyway as I'm going under general anaesthesia, so it's understandable that I would go in there alone for that.

Can you just... say no? I mean - explain that you need to be able to concentrate on the preop stuff and it's better than you do that alone?
So I suppose in a way, yes :)
I really struggle with saying no, so even the plan above with its "semi-no" feels difficult, but I think that it is the best option for me and where I am at.
 
Thread starter #6
((( @bellbird )))
I am sorry that you have to deal with THIS fear on top of the natural anxieties about surgery. When I was young
(I am guessing that you accidentally sent this without finishing, but thank you for responding too :) )
And yeah. Definitely hard having to deal with this fear on top of the surgery anxieties like you say.
 
#7
I did accidently post my message before I was finished... And it looks like you have it figured out.👍🏼

My daughter had Herrington Rods in her back because of severe scoliosis so I kind of know what you will be going through.

My biggest advice is to make sure they are giving you stool softeners as soon as you can have them. The pain meds will slow your system down and you DON'T want to NOT be able to move your bowels. It's a bad, bad thing. They try to stay on top of everything but sometimes ONE instruction slips by and you have to pay the price.

I hope you are feeling somewhat better abut the situation.🤗☺️🙂❤️
 
Thread starter #8
I did accidently post my message before I was finished... And it looks like you have it figured out.👍🏼
Yes just reading your full post now! :)
If/when you get called about the pre-op appointment, that would be a big a good time to ask if there's a way the nurse or tech can help out by telling the parents that the Dr prefers to see the patient alone first and tell them they can come back in a few minutes.
This is a good idea too, will try to work this in with my current plan.
Another thought. You can write a small note (in an envelope) to give them when you check in for the appointment, to put on/in your chart, requesting they "maneuver" things so that your parents don't get back there. The "provider" can't tell them anything that you don't approve of, and when allowed in, they can ask your parents if they have any questions. I don't know if either of these things are helpful but I hope so.☺️
They are, thank you.
I think I will definitely ask specifically for a note to be put in my chart.
Before this issue came up last night, I was worried about an unaware nurse/doctor mentioning something when I am post-op in the hospital and not in a state to be able to pre-empt a situation before it arises.
My daughter had Herrington Rods in her back because of severe scoliosis so I kind of know what you will be going through.
Oh wow, brave daughter :hug::hug:
My biggest advice is to make sure they are giving you stool softeners as soon as you can have them. The pain meds will slow your system down and you DON'T want to NOT be able to move your bowels. It's a bad, bad thing.
Thank you for this advice.
I had seen it mentioned around surgery blogs, but will definitely take heed.
I know how awful I feel if I have been blocked up and not able to move my bowels for a while under "normal" circumstances, I can only imagine that will be amplified 100 fold when I'm drugged up on morphine and whatever else.
I hope you are feeling somewhat better abut the situation.🤗☺️🙂❤️
I am a bit, thank you :hug:
 
#9
I am so glad that you have talked to your GP about this and will talk to your T! I think the very most important thing is to realize that you can a) be an adult and in charge and b) ask for help from those you trust. I like your plan!

Yes this does seem like a f*cking minefield!! You've done a good job so far in figuring out how to get through it. You might want to rehearse with your T about how to answer any probing questions that come up.

Lots of (((hugs))). This is a lot to juggle.
 
#11
Then I just got a text from my mum:
"BTW I'd like to come to your preop and meet the team. No doubt dad would too".
1. Breathe. You’ve got time to sort it.

2. Would it be possible to schedule 2 appointments? Somthat your caregivers can touch base with the team and be in the loop, without you having to have them there for the time you want 1:1 with the surgeon/anesthesiologist/etc.? Or tell your parents a time somewhat past the start of the appointment & work it out with the nurse to bring them back for the last 10 minutes of the appointment?
 
Thread starter #12
1. Breathe. You’ve got time to sort it.
Thank you.
I certainly was in a right panic last night. I should have expected a text like that from my mum at some stage, but it just really caught me off guard.
Feeling slightly better today with murky-panic thoughts having cleared slightly from discussion here and with GP, but am taking some deep breaths now though; always a good reminder :)
2. Would it be possible to schedule 2 appointments? Somthat your caregivers can touch base with the team and be in the loop, without you having to have them there for the time you want 1:1 with the surgeon/anesthesiologist/etc.? Or tell your parents a time somewhat past the start of the appointment & work it out with the nurse to bring them back for the last 10 minutes of the appointment?
Also good idea. Will speak with my GP about this and she/I/we could approach the surgical team about this prior as well.
 
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