Cerebral Palsy
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Calcified Tendonitis

Kell430Kell430 Member Posts: 59 Courageous
edited May 2019 in Cerebral Palsy
Hi I've recently been diagnosed with calcified tendonitis, it's exactly where they lengthened my tendons when I was 9 years old, anyone else with   CP got/had this,  I'm awaiting surgery but consultant doesn't quite know how to fix it xxx

Replies

  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    Hi @Kell430
    I have not experienced this. Is it in your shoulder? As that seems to be the most common place where it occurs.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Kell430Kell430 Member Posts: 59 Courageous
    edited May 2019
    @Richard_Scope,  no it's in my right ankle xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    I thought it might be @Kell430. I have had all of my tendons lengthened too but fortunately not developed calcification. What has your consultant said to you exactly about potential treatments?

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Kell430Kell430 Member Posts: 59 Courageous
    @Richard_Scope, he has said it definitely needs surgery but I think he's worried about where it is, as I've had surgery there before, although it was 30+ years ago, I have told him if the pain I have continues I'll take my leg off myself and then he will have to sort it xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    I would not endorse doing that @Kell430 :smiley: 
    Has he not suggested any other alternatives like ultrasound and shockwave therapy? It is less invasive than surgery.

    Scope
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  • Kell430Kell430 Member Posts: 59 Courageous
    No he hasn't mentioned anything alternative xxx
  • StayceStayce Member Posts: 532 Pioneering
    Hi @Kell430

    I haven’t experienced calcified tendonitis- but have experienced a lot of tendon related problems normal tendonitis and bursitis mainly. Any Tendonitis can be hard to shift and there can be a lot of scar tissue involved which seems to increase with what are already tight muscle. I am assuming you have had an MRI or ultrasound scan?

    Have you been referred to a rheumatologist consultant- might be worth considering to see if cortisone injection or ultrasound treatment might be suitable before undergoing surgery?

    Have you spoken to a physio about whether acupuncture or a TENs machine might help with the pain and/or swelling?

    Best
  • Kell430Kell430 Member Posts: 59 Courageous
    @Stayce, the calcification showed up on a normal xray, it is that bad.  I'm willing to try any pain relief at this time as all prescription drugs have failed to take any pain away xxx
  • Kell430Kell430 Member Posts: 59 Courageous
    I had a consultation with an orthopaedic surgeon yesterday and he went through my case and the only solution he can see is to amputate my leg, I have to now see a prosthetic and rehabilitation consultant, just to see where to amputate and if I would cope with a prosthetic limb and CP, not exactly what I was hoping for and there is so much going round in my head, as to how I'll cope and will I be able to get back to my job.  Thanks for listening xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    @Kell430 I'm surprised to read this. I can understand that there is a lot going around your head at the moment. When is your appointment with the prosthetic and rehab consultant?

    Scope
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  • Kell430Kell430 Member Posts: 59 Courageous
    @Richard_Scope I don't have the appointment yet, however the orthopaedic surgeon was hoping it would be within 2weeks xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    edited June 2019
    Don't forget @Kell430, if you are not happy and feel like you need to discuss it further you can always ask for a second opinion. I think if it was me in that situation I would think about getting a second opinion. 
    Scope
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  • Kell430Kell430 Member Posts: 59 Courageous
    He's about my 4th surgeon lol all the others looked at my x-ray which shows how bad the calcification is and said given you have CP I'm not willing to tackle that.  The Achilles tendon where the calcification is, was cut and lengthened when I was about 9 now the calcification is exactly where that procedure was performed, the surgeon I saw yesterday said he could take about half of it away but the pain I'm in would not go away and the calcification would build up again, hence he thought amputation was the only solution xxx
  • StayceStayce Member Posts: 532 Pioneering
    Hi @Kell430

    I am sorry to hear your news from your orthopaedic consultation today. I can appreciate your head must be spinning at the moment.

    I would take some time to reflect on the appointment because it must be a shock and potentially a very big and quite drastic step ( in my view) is being presented to you
    I would talk to everyone you can before making a decision 


    Even if you have seen 4 surgeons already I would seek many more:

    I would also speak with:
    1. GP - Ask them about their adult CP pathway in light of the new NICE guidance and that you want to speak with a specialist in relation to CP (either ortho or neurologist), as you could just be in a generic ortho clinic and let’s face it -that’s no good for us CP candidates:) Things are happening on the ground with the NICE guidance slowly where professionals are joining-up for adults with CP
    2. Physio or occupational therapist - both for opinion on your leg now and their prospects if you were to proceed 
    3. NHS Patient Liaison service or NHS England - stating your not happy with the options being presented to you, orthopaedics won’t touch you because of CP etc.,
    5. Have you been referred to pain clinic? - What is their view on this management?
    4. Is the surgeon that carried out the tendon transfer still around? 

    Just st my thoughts at the moment..

    Best


    xx
  • Kell430Kell430 Member Posts: 59 Courageous
    Thankyou for your advice @Stayce I have asked about physio but they feel that because my muscles are so tight and the calcification is so bad that physio would not help, I will look into all the other options that you mention xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    Good morning @Kell430
    How are you feeling today? I'm glad that you are going to look into the options that @Stayce has mentioned, it won't do any harm to be as well informed as possible. Remember, we're here to support you whenever you need it :)

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Kell430Kell430 Member Posts: 59 Courageous
    @Richard_Scope Thankyou, I am feeling more positive today, my partner brought home some paperwork from his employers, so that when I need it he can have a career break of up to 6months and they'll give me counselling before the surgery and should the amputation go ahead then counselling after too.  At least they realise it will affect him too xxx
  • StayceStayce Member Posts: 532 Pioneering
    edited June 2019
    Hi @Kell430

    I am glad that you are feeling more positive today and as @Richard_Scope says we are here whenever you need us. 

    I have found this online it’s a medical study on calcified tendonitis of the ankle in Spain, which might be worth looking at. Uses a form of acid and electrode treatment with ultrasound that seems to show improvements in size of calcification and pain. Worth a look

    https://clinmedjournals.org/articles/ijfa/international-journal-of-foot-and-ankle-ijfa-3-023.pdf

    Best
  • Kell430Kell430 Member Posts: 59 Courageous
    @Stayce I will look into this Thankyou xxx
  • Richard_ScopeRichard_Scope Posts: 2,840

    Scope community team

    Hi @Kell430
    Great to read that you are more positive today! I'm not medically trained but I feel it's worth exploring every other option with your consultant.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Kell430Kell430 Member Posts: 59 Courageous
    I will @Richard_Scope I'm the type of person I have to know all my options good or bad, I will talk through every option at length then the decision will be made once I'm happy that I have all the info I need xxx
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