The closer I get to my surgery date the more my anxiety rises. I’m going to be treated as Vanderbilt’s adult hospital this time instead of the children’s hospital so I’ll have a completely new pain team and anesthesia team, same great surgeon though. I’m really frightened still. The last 3 surgeries have been complete hell and traumatizing. This new nurses and anesthesia team are having me come in early so that they can give me a nerve block pre procedure. From what I looked up that’s some sort of injection which really scares me, I haven’t had that done before. But when I meet with the new acute pain team, I hope they will address my concerns more seriously than the team at the children’s hospital did in the past. So far my experience has been the the first week of recovery is mind blowing pain. And from what I have read, once a nerve blocks wears off, you really need proper pain medication to manage the after effects. I’m trying to stay calm because I know panicking does nothing but I’m frightened nonetheless. Not to mention losing function of me leg is a near constant worry in the back of my mind but I just kinda have to keep hoping for the best as far as that goes. They said they cannot guarantee I will be completely pain free after surgery, which I understand, and as long as the pain is tolerable that’s alright, I’m just afraid of being in 10/10 pain again for a week straight. My surgeon mentioned during my last procedure that this upcoming one would be even more painful because of the area they are working on this time. That definitely did not make me feel any better lol.
No, being honest has two edges to it, doesn’t it?!
Like you say, being treated as an adult sounds like they are communicating with you like an adult as well, so that feels good.
It does sound like a difficult procedure from the point of view of pain but it sounds like they know that and the aim will be to look after you. I can’t claim to have a well used prayer line to anyone but you know I’m here to talk through with anything and I’ll send you lots of love now and on the day.
If it helps at all, I think you’re an incredible person: you have shown an incredible amount of strength when things have got tough and you had a very difficult time recently as the ability to go forwards with an operation seemed impossible, so to be picking yourself up from that and going forwards again is calling upon you for that strength once more, isn’t it? I think you’re amazing and you’ll do great!
Lots of love,
Richard
Thank you, this means a lot, more than I can express 
I really hope that one day a cure is found for our condition, or at the very least a better form of treatment. My heart goes out to every one of us affected by this nightmare.
I am certainly thinking very hard of you - your strength and endurance has crossed continents.
I know that hellish, traumatising hospital experiences leave their imprint.
I have recently forced (gulp, scary!) myself to read my clinical notes from my ex-hospital. I realised how I pretty much apologised for them as they were constantly telling me how awkward/complex/unique my case was, and how well they themselves had behaved in my care.
They were very effective in making me feel that my pain was my fault. I took on their shame without actually realising it and this had a massive impact on how I deal with the pain on a day-to-day basis.
There aren’t any words to describe the fear before this kind of surgery but the post-op pain and distress you suffered in your previous operations is absolutely not your fault.
It is so unbelievably hard to describe acute pain because words just don’t exist to do the job but…I think you’ve done just that. Your message is powerful: it is incredibly important for an acute pain team to hear a patient say that they are frightened of not being taken seriously. They need to hear everything that you’ve written in your message.
Sending tons and tons of energy, strength and support,
Talloak
I’m hoping that since I’m being treated at the adult hospital rather than children’s hospital this time that they might be willing to give larger doses of pain medication. They will be giving me a nerve block pre procedure this time. I’ve never had one of these before, this was never done for me at the children’s hospital so at least that’s one step in the right direction for an adjustment to pain care. I am very blessed and lucky to not be in severe chronic pain on a day-to-day basis as I know some of our friends on here are unfortunate enough to have to try to cope with in their everyday lives. I do have my bad days but for the most part I just have persistent discomfort and on my good days I can ignore it all together. But the pain that I experience the first week or so after my surgeries is a whole nother ballpark. I have faith that things will be better this time around. Fourth times the charm I suppose LOL. The only thing that gives me peace of mind is that my surgeon does seem to understand the severity of my pain and the toll it has taken on my mind and my mental health and I think that he will help to make proper adjustments this time around. This new pain team I will be meeting with I don’t know anything about them, I haven’t seen them before, but hopefully they will be more understanding than the pain team at the children’s hospital who had in the past essentially told me something along the lines of “if you believe the amount of pain medicine that we give you will help you then it will” or something cheesy like that.
This pain situation reminds me of a show my wife watched on tv last year . It was about teenage pregnancies and their stories. In one episode I remember one of the couples were discussing labor coming near. The boyfriend said something in the lines of “if you focus real hard into the pain not hurting then it wouldn’t hurt. If you focus that it will hurt then it will.” Girlfriend started to laugh at him and told how stupid that comment was. I agree with her. It’s not about focusing one way or another but about it hurting plain and simple. Always thinking about you and the others in forum with upcoming surgeries. Best wishes !
Moonglow,
You are very eloquent in explaining your fear of the pain following your surgery. Give anesthesia and the pain team the exact same explanation you have given here. Hold nothing back. Describe your past experiences in detail.
The nerve block, although new, might be just what you need. Yes, it wears off, but I believe that analgesia will be given IV prior to it wearing off. That way it will be “on board” prior. Ask the pain team.
Wishing you a better experience!
I called today and was told that I will likely be able to get my pain medication covered for free which will be a huge blessing if that ends up being the case since I’m uninsured. I was suggested to request a refill option from my pain team and my doctor so that way I can have enough pain management throughout the week of my recovery because apparently in my state they are only supposed to send you home with 3 days worth of pain medicine after your procedure which is nowhere near enough. Hopefully my team will agree to this, as well as upping my dosage.