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14 year old male Type 2 congenital kyphosis

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lotokids
lotokids

Hi, my son was just diagnosed.  He has an 81 degree curve (first and only spine film).  My biggest concern is that this child has already been through so much.  He has been under general anesthesia 14 times already.  Some minor procedures such as PE tubes and dental surgeries and some more in-depth such as eye muscle, hernias, tympanaplasty’s and BAHA implant surgeries.  This is a child that does not complain about pain it is something he has always known.  He didn’t complain after surgeries or when he has ruptured ear drums.  He has autism and is verbal but it is very difficult to get him to aknowdge  pain. His doctor was very surprised that he is not in pain.  I don’t necessarily believe he isn’t.  Doctor want to re X-ray in a year and see if he has progressed.  He recommends if he does progress to the 90 degree realm that we for sure do surgery as he is worried how this will affect him later in life.  

Is re Xrayjng in a year too long?  I feel like we should do at least 6 months from now.  

Also I am leaning toward surgery with just the degree of curve alone based on his lack of communication when it comes to pain.

Any thoughts would be appreciated.

0 likes, 7 replies

7 Replies

  • Anonymous111
    Anonymous111 lotokids

    Posted

    I'm so sorry. Poor boy.

    I agree with you - he's going through puberty and will be growing quite rapidly.

    If he were my son - I'd be pushing for an x-ray in another 6 months.

    Again - I'm so sorry.

  • andy15149
    andy15149 lotokids

    Posted

    Hello

    Firstly let me say how sorry I am to hear your story regarding your sons problems I feel for him I really do!!

    I have Sherman’s desease kyphosis with a curve arc 75’ at present along with lumbar straitening, bone hypertrophic spurs and thoracic compression t3-t8, juvenile rheumatoid arthritis and problems with my left shoulder and left leg caused by the pressure in the thoracic spine.

     This also caused other problems like hernia and ibs due to the pressure on my internal organs caused by the kyphosis curve squashing everything.

     I was diagnosed at 18 privately after gp was useless just telling me to sit up strait. The consultant found it strait away and I started having treatment for it. My original curve degree was 53’ at 18 and it’s had progressed since then. I am now 37 and fighting with everyone trying to get something done to help with the pain. All options to this point have failed and have been refused fusion surgery due to then having to break thoracic and lumbar spine and fuse twice the risks of that are 1-10 I will never walk again after the surgery so they say the risk is too high now at my age.

    We pushed for surgery when I was diagnosed at 18 but they told me and my family it would not get any worse but wouldn’t get better either all they could do with give me relentless opioids and other painkillers to help with the pain it caused. In 2009 I had a car accident which twisted the lumbar spine and so that now isn’t strong enough to cope with thoracic fusion it wouldn’t take the pressure.

    I was seeing a nurologist at spine centre and they did two x rays one in 2015 and another 6 months later showed little movement over that six months and then discharged me as they couldn’t find the original X-rays taken by the private consultant. I have only just found out from my pain cosultant that they should be monitoring the curve degree every year and he is furious that they haven’t done that’s as in the 18 months I’ve been with him he can see the curve getting worse.

    I am now referred back to neuro surgeons to be checked and monitored properly now so will be fighting for op as I can’t take the pain anymore.

    I have a young family who I hardly see due to being bedbound in pain most days and hate myself now after loosing much of my life to this condition.

    My opinion is that they should be monitoring your son every six months constantly to watch how the curve progresses. In my case 6 months wasn’t long enough to see significant movement but by the sounds of your sons curve the six months should be the minimum.

    If they had offered to fusion my spine when I was 18 I would have jumped at the chance knowing now how bad it has got becasue it wasn’t done early and they basically lied to me saying it won’t get any worse, how wrong they were, And now having to fight to get something done to help me.

    I think you have to shout loud enough at them otherwise they won’t bother with it. I have found that which is bad practice really. I admire you son for not complaining about the pain as I know hiw much pain I am in and the amount of top end opioids I need to just be able to walk once you start on the pain meds you build up a tolerance and doses constantly increase and you’ve find yourself in a viscous circle. If they try to force the meds on you for your son pls do what’s I do and research what they cause and how they affect your life.  I am in the process of detoxing the strongest opioid there is fentanyl due to a deal I made about coming of the comatose dosage I was on at 125mg every 48hrs transdermal patch. This was in preparation for my denervation procedure in Feb 2017 being a success, unfortunately it failed and made the problem worse I still however am determind to get off this nasty drug and get some of my life back it’s taken away. I am only telling you this so that you can be prepared for what they might offer you for your son, he has suffered enough and wouldn’t want him to go through more bless him. Detoxing these opioids is no picnic believe me. The drugs change your whole personality and in my case make me very short tempered and I realise now how nasty I had become on the fentanyl which doesn’t help anyone especially those closest to you. They don’t tend to tell you how bad these things are and also what it takes to come off them. It’s been 6 months nearly and my brain function could take up to two years before it is back to normal after stopping for good.

    If I could go back to 18 and have the corrective fusion surgery I would do it in a heart beat knowing what I know now. But there are very big risks involved in the surgery as with any spinal surgery. My neuro said if we did it, it might not even take away the pain and could cause other problems further down the line.

    For my view and I am not a doctor the fusion or corrective surgery at his age may be worth the risk especially if the condition like mine is progressive ie getting worse. I was told the recovery would be about 6 months to a year and would have to learn to walk again but that may not be the case for your son.

    At the end of the day the decision rests with you an your son and whether the risks involved outweigh the possible positive outcome.

    I am hopeful that at least some of what I write can help you in some way and hope your son gets what he needs. I really do admire him for what he has been through and the support you must give him and for him not to complain about the pain is amazing. 

    In closing my advise would be to push for the the 6 months check ups and then get as much info as you possibly can regarding the options available to you. I find you can never have too much information to base a big decision on it might not all be relevant but anything you learn will help you and your son

    I’m sorry I can’t be anymore help but hope some of what I said can help in some small way.

    I wish you both the best of luck for the future and hope it all works out for him.

    Also the forums help allot there are allot of people in the same boat and it has helped me to talk to them and know your not alone there are people in this world that truly care and try to help anyway they can.

    Kind regards and good luck!!!

    Andy

  • lotokids
    lotokids

    Posted

    THANKs, doing a lot of research.We have switch the appointment to May to get re Xrayed.  We are feeling pretty confident that we will request the surgery with the amount of curve that my that’s has and the fact that with husband disabilities we have to advocate for him.  

    Does anyone know if it is better to wait until you are done growing to have the surgery?  Haven’t been able to find much info about that.

    • char38365
      char38365 lotokids

      Posted

      Hi,

      My son was diagnosed with Scheuermann’s right before his 15th birthday.  We were  told his curve was 76 degrees and to bring him back in six months for another X-ray and to see if it was progressing.  We did a lot of research and found that there is a short window to treat this... if we wait until he is done growing,, it is too  late.  We took him to another doctor who prescribed him a TSO brace.  He was also prescribed physical therapy.  We chose the Schroth method.  It has helped him and his curvature is about 10 degrees better so far.  However it requires the patient to actively participate in the therapy and to do the stretches on their own. You mentioned that your son is autistic so I️ am not sure how cooperative he would be.  The surgery may be really hard on him.  My son does complain about pain and he is showing some disc herniation but is still able to play sports with little to no problems.  We are hoping that we can at least stop the progression so he doesn’t have a lifetime of problems.  All the best to you and your son.  Do you live in the US?

    • char38365
      char38365

      Posted

      Sorry, should have been more specific.. . Apparently, treating via bracing is only effective if the child is still growing.  The first doctor we saw wanted to wait and re-X-ray. We knew that would shorten that window that we could treat him with the brace so we sought a second opinion.  The first doctor was  just an orthopedist... the second doctor is an orthopedic surgeon who specializes in children with issues of the spine.... our son will wear

      The brace until he is done growing.. I️ am not sure if it will be effective long term but so far it seems to be working, so we are going to try it!  The Schroth therapy was recommended by several people in this forum... research it.  Unfortunately, it isn’t very well known in the US but there are therapists out there who do it. We found two in Ohio, where we live and chose to have him see one of them.  It is very good because it teaches the patient a lot about their own body awareness. Hope that helps clear things up!. 

  • lotokids
    lotokids

    Posted

    We are in the US, we are in Utah.  

    So help me understand why does treatment need to happen before they stop growing?  Are you talking bracing and PT or surgery also?  

    The compliance factor is exactly why we are looking g at doing surgery as we don’t think PT and bracing would help with him because he wouldn’t be compliant.  We realize surgery will be very difficult but feel the end result will be worth it for him.

    Any who have done surgery with a teen how long was the surgery, how long in the hospital, how long before back to school and how long before you felt they were back to their “normal” selves.  

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