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Thread: How can I help Nicol?

  1. #1
    Join Date
    Nov 2009
    Location
    Aberdeenshire
    Posts
    97

    Default How can I help Nicol?

    Nicol is very down after having his fusion on 20th November. He hasn't recovered as well as we would have hoped and in fact is just out of hospital as he collapsed in pain on Thursday while at his first clinic appointment and was admitted to Aberdeen. I think a lot of the problems come from him not eating - he has lost a stone in weight since the op, and he already was very slim, so doesn't really have any reserves. He is 5 ft 8 and weights 7stone 5lbs. Saw the dietician at hospital so she has given him pro-cal-shots to drink which hopefully will help. However, Nicol is his own worst enemy. He didn't eat until he was 3 years old and was tube fed till then. It feels as if we have gone back in time with me begging, threatening, bribing and anything else i can think of to get him to eat. Now he is very depressed because he only got a correction to 46 degrees (think i previously had said 35, but unfortunately not), apparently his spine was very stiff. He says he wishes he had never had the op as he is in pain, can't move and is still left with a large scoliosis. All he is doing is lying in bed which doesn't help at all. I'm looking for any advice from someone who similarly felt so bad after op but has now recovered and is glad they had it. Thanks for any replies. XX

  2. #2
    Join Date
    Nov 2012
    Location
    South London
    Posts
    992

    Default Re: How can I help Nicol?

    I am so sorry to read that he is going through all this. I completely understand how you feel and what he's going through right now. Another way you could try and get him to put on weight through the dietician is see if they can give him foods that are slightly higher in fat than normal. Also see if they have different menu's that you can look through which are more appealing to him than the regular one. Unfortunately i can help on the side of disappointment from the correction, as i was never told what i would get as like Nicol, my curves were stiff, but i didn't go into it for the correction, i just wanted it to be stable. For the first week, you might remember me reporting that i was just like him, i had no energy to do anything, was also in lots of pain, so i just slept. After that, everything still hurt lots and still took huge amounts of energy to do things, even eating was a chore (took me 10 mins or so to eat a pot of yogurt!) I like Nicol regretted having the op because of all that. But getting my meds correct and resting properly and also getting food inside me, slowly helped to recover from it. At 2 months i still had pain from it, but it was bearable. And now i feel so happy i have had it, yes i have bad days when the pain is bad, but i realise that it will always be the case due to how I was pre surgery, but it is no where near as bad as it was. For perspective, the winter pain would be 8-9/10 daily, now its around 2-3/10

    I would suggest talking to the pain team at the hospital, as by the sounds of it the meds he is on aren't working properly and they will be able to sort him out something stronger or change the mix he is on. Recovery takes a long time, it took me around 5 months to properly feel better and recovered from it.

    I really hope that things start to look up for the poor guy, you've all been through so much this year, you deserve some good news. Hope this has helped, and feel free to ask anything else about how i was post op as im more than happy to help you

    Jay
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  3. #3
    Join Date
    Nov 2009
    Location
    Aberdeenshire
    Posts
    97

    Default Re: How can I help Nicol?

    Thanks for your reply, it really helps. It's good to hear there is light at the end of the tunnel. I would rather a million times that I had to go through it rather than him. XX

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