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Thread: How can I help Nicol?

  1. #1
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    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
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    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 amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  3. #3
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    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

  4. #4
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    Default Re: How can I help Nicol?

    I am sorry to hear your son is struggling so. I have been following your thread as my son has been told he will need surgery within the next 3-6 months. I do not think it is too unusual to have a rough recovery. Everyone is different. I know it would be seen as a step back but have you considered tube feedings to get him past this rough spot? It is so important to get proper nutrition following surgery. Also, depression is made worse by poor nutrition and low blood sugars. It must be so tough to watch him go through this but know there is no right choice to be made when treating our scoli kids. There is only the best treatment we choose with the information we have. There are no crystal balls so please don't beat yourself up. You are doing the best you can for your son. Please continue to keep in touch and know that I will be praying for you all. God bless.

  5. #5
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    Default Re: How can I help Nicol?

    Oh poor Nicol, I'm so sorry to read this It is so incredibly hard as a mother to watch your kids go through pain. I do hope you can manage to get some nutrition in him and that he starts to recover very soon. Thinking of you all *hugs*
    Me, a Mod? Nah ... I'll always be a rocker

  6. #6
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    Default Re: How can I help Nicol?

    Thanks everyone. The supplement the dietician gave him has helped a lot and he has started to gain weight. We are away to another clinic appointment (fingers crossed there are no problems this time!) however he is very unhappy with his correction - he made me take a picture of his back last night and he feels he doesn't look very different. I read something somewhere (not sure if it was this site) about post op patient being put into traction to help increase correction - does anyone know anything about this and if it works? Thanks. XX

  7. #7
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    Default Re: How can I help Nicol?

    Hello...wondering how Nicol is doing? You are such a help to others...sending best hugs and prayers your way.

  8. #8
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    Default Re: How can I help Nicol?

    Hi

    I lost a lot of weight after my surgery, I just could not face the large plates of food they came round with, the dietician put me on the protein shakes but I could not stomach them either, the banana flavor was the worst (YUK)

    After I got out of the hospital I was taken back in to the local hospital with severe pain (couldn't get up and they had to call an ambulance), when I got to the hospital (with back pain) they operated on my stomach, apparently what had happened was because of all the anaesthetic and morphine they had pumped into me which had a nasty reaction to my system and the fact I had not eaten much solid food for about a month the bowel had stuck to the stomach wall lining creating a blockage in my system (to be honest although this surgery was only an 1/2 hour procedure they kept me nil by mouth for 5 days and stuck a tube up my nose and down into my stomach which was torture) that little operation to me seemed way more painful and stressful than the major anterior/posterior release (14 hours in theatre and 4 days in intensive care) I had undergone on my rather nasty kyphotic curve

    I really hit rock bottom at this time I just wanted to give up living to be honest the pain was dreadful, I became very withdrawn and depressed and needed a rocket up my bum from my dad to bring me back round

    I just wanted to let you know this as it is something you may want to let your son know and it might encourage him to eat a little more solid food

    Hope all that makes sense, if not just drop me a pm and I can go into in a bit more detail

    I do understand exactly what he is going through though, it is very hard to face food when you are so full of drugs and in pain and readjusting your head to having such a massive invasive procedure
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  9. #9
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    Default Re: How can I help Nicol?

    Thank you for your reply Mark, sorry haven't been on for a while - our internet has had problems and I was waiting for my husband to come home (he works away month on/month off) to fix it. What you went through sounds horrendous - thankfully Nicol wasn't so bad. He has finally started to put on weight so hope it continues. He is now having major pain in his shoulder which we are battling the doctors with - why does everything have to be a battle? Really appreciate your replies everyone. XX

  10. #10
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    Default Re: How can I help Nicol?

    Good to hear that he is now putting on weight. I also lost a lot of weight after mine, mainly due to not eating for a week, but then found when i started to eat and eat well, it started to come back on and continued to do so, but now i have levelled out again now and am (at a guess) the same weight if not a bit more than i was pre op.

    So i hope that it is the same for Nicol and that he becomes himself again soon. Has got more energy and drive to do more things now he is eating better?

    RE the previous question about Halo post op, i doubt it would much for him because of the rods holding things in place at a certain degree, but it could be worth bringing up at your next appointment as the surgeon is the best person to ask for this instance.

    I also suffered from shoulder pain post op, what i figured it was the muscles pulling to their old place as they had known for years, but it does go away after a while, as horrible as it is. Is it like this or is it more of bone pain? Either way it could just be his body wanting to be back in the original position before the op, but like you are already doing ask the surgeon as he will be able advise you on whats best to do.

    Good to hear from you again and i hope that you are both doing well and that Nicol continues to recover well after the shakey start.

    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 amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  11. #11
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    Default Re: How can I help Nicol?

    Yes, he was beginning to get more energy until this shoulder pain hit, but it has wiped him out a bit and stopped him getting back to school. It does sound exactly like what you described - muscles pulling rather than bone pain. They've now given him diazepam for the spasm which helps a bit but not completely. We are waiting to hear from hospital when he can have some physio to maybe release the muscle, if possible. So good to hear that it does go away eventually as it is really getting him down. The local doctor said his shoulder is sticking out like a wing, so presume this is because he only got a correction to 46 degrees and that this is what he is left with so we will mention the halo op just in case. Thanks very much. XX

  12. #12
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    Default Re: How can I help Nicol?

    Hi there. I can relate to the weight issues. Maddy was skeletal after surgery and had no appetite. No amount of parental anxiety will help, in fact it hindered our situation as we got stressy with each other. She nibbled biscuits for a while. Then I think the turning point came when she said she fancied pancakes, she ate them for days! Then she fancied Dominos pizza, I even let her have the leftovers for breakfast! Once she was eating I made a pact with her that she could eat what she wanted as long as she had one main meal a day that I cooked and that included vegetables! It took at least 18 months before she stopped looking skinny and 2.5 years until she became an acceptable weight. Its a long haul but you will get there.
    Mum to Maddy aged 15. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.

  13. #13
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    Default Re: How can I help Nicol?

    Thank you - that sounds so like Nicol! XX

  14. #14
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    Default Re: How can I help Nicol?

    Quote Originally Posted by nicolsparents View Post
    Yes, he was beginning to get more energy until this shoulder pain hit, but it has wiped him out a bit and stopped him getting back to school. It does sound exactly like what you described - muscles pulling rather than bone pain. They've now given him diazepam for the spasm which helps a bit but not completely. We are waiting to hear from hospital when he can have some physio to maybe release the muscle, if possible. So good to hear that it does go away eventually as it is really getting him down. The local doctor said his shoulder is sticking out like a wing, so presume this is because he only got a correction to 46 degrees and that this is what he is left with so we will mention the halo op just in case. Thanks very much. XX
    Yeah, it does wipe you out, mine hurt so much i had to walk around with either my hands in my hoodie pockets, or walk around holding my shoulders to take the weight off of them. I won't lie, i still do get some to date, but thats normally when ive been on my feet all day or with a bag on lots (i guess a normal person might get this too) so it does get better in time. Its good to hear it helps him. How is he feeling now after taking it for a few days? I use to combat mine with Tramadol and paracetamol due to them being the only meds i was able to take. Normally it isnt due to caught muscles, they have just gone to a place that hasnt seen the light of day for several years, so they want to go back, but cant. The worst shoulder for me was my low one, didnt realise how low it was till after the op and actually feeling muscle on top of it.

    It could well be, I dont know how my shoulder blades look, but i can tell that my high shoulder, shoulder blade does stick out near the top and on occasion gives me pain, but again normally if ive been out lots and is very cold. Which could be a reason he is feeling rather run down by it.

    Really hope things continue to improve. How's the eating coming along? It took me a while to gain mine back, but like Maddies mum, I was alowed to eat anything i wanted during the day (usually chocolate digestives or cheese on toast, but boy did that hurt sometimes to cut the cheese!) , but had to have a main meal in the evening, even if i didnt eat the whole amount. Safe to say i have now gained it back, but dont think anything extra though, as i also find it hard to put weight on, despite what i eat.

    Hope this has helped and that you are both well x
    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 amazing, Mr Bernard.
    And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  15. #15
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    Default Re: How can I help Nicol?

    Thank you, definitely helps eating is going much better and he has put on more weight. The diazepam has helped, and they have changed his pain meds to co-codamol as they think he might have become resistant to tramadol. He's on study leave at minute, so that is helping too as he can rest during day. We are waiting to hear from hospital physio to see if we can get green light for him to have light physio at home to see if muscle spasm can be reduced but it takes them so long to reply!!! It has been very cold here, so like you, I think that does make him worse. He's worried at the minute, as he was at local hospital for his growth clinic and he has lost a cm already from the height he gained - this along with the pain make him think this is his back curving again, although I presume it is just his back "settling" down. XX

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