Cerebral Palsy
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Hello - and any advice - spastic diplegia - referral to specialist

Regan101Regan101 Member Posts: 4 Listener
Hi Everyone

I'm new and I'm really hoping you guys might have some advice and words of wisdom for me.

I have mild CP affecting my left side - spastic diplegia. I was diagnosed at 23, in 2009 despite have two ops to lengthen my Achilies Tendon when i was young - no one ever put two and two together to come up with CP until later on. I'm active and fairly mobile. I ride horses and have a demanding job.  You could say I fall into the grey area where i don't appear disabled.

Since my diagnosis, I've been on Bacolfen since then and have had many rounds of different types of physio too. 

The thing I'm really struggling with is chronic lower back pain, probably due to over compensation from my legs. I've managed with different pain killers over the years, but it's really starting to affect what I'm doing and to be honest, I'm fed up being in constant pain. i am still seeing a physio regularly, which helps but I've also just asked for a referral through my work healthcare scheme to see a specialist to try and help

I just feel at a really low eb, my GP is useless and doesn't have any advice as to who i should be referred to or even what kind of consultant. So my question is, does anyone have any experience of this, or any advice about what kind of consultant i should ask for? or even any recommendations (I live in Rutland). Or any treatment options that i might be about to consider - steroid injections etc? 
 
I've never had a thorough assessment  so I don't know if I'm barking up the wrong tree. i just feel a bit like I've fallen through the gap and no one will help me!

Thanks for reading :)
Regan 

Replies

  • Richard_ScopeRichard_Scope Administrator Posts: 2,410 Scope community team
    Hi @Regan101
    Great to meet you and a very warm welcome to the community. I'm sorry to read that you are experiencing a lot of pain from your lower back. Your back issues might not necessarily be as a result of your cerebral palsy, there could be other factors that need to be investigated. I would have hoped that your G.P. would have referred you to orthopaedic/musculoskeletal consultant.
    The consultant should be able to assess your gait and the general mechanics of your movement.
    I really hope they act for you soon. If I can advise you further please let me know.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Regan101Regan101 Member Posts: 4 Listener
    Hi @Regan101
    Great to meet you and a very warm welcome to the community. I'm sorry to read that you are experiencing a lot of pain from your lower back. Your back issues might not necessarily be as a result of your cerebral palsy, there could be other factors that need to be investigated. I would have hoped that your G.P. would have referred you to orthopaedic/musculoskeletal consultant.
    The consultant should be able to assess your gait and the general mechanics of your movement.
    I really hope they act for you soon. If I can advise you further please let me know.
    Hi Richard
    Thanks for your reply. Yes that's a fair comment.  I wouldn't be surprised  though if it is all connected as it's the same side and i know how tight my muscles are there anyway. i can feel the compensation in my movement because of the limp and stress on my left side.

    I've seen lots of otho consultants over the years, I'd just like to see one who acknowledges the CP and doesn't just say do more physio - i know how beneficial physio can be, but I am already doing it!

  • Richard_ScopeRichard_Scope Administrator Posts: 2,410 Scope community team
    It probably is all connected @Regan101. Sometimes people can attribute every ache and pain to their CP and it's always been a concern of mine that other health issues could be missed because of this. I want to make sure that you are thoroughly assessed and nothing is missed.

    Every consultant you have seen does not acknowledge your CP diagnosis?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Regan101Regan101 Member Posts: 4 Listener
    well the last ortho one i saw properly was 10 years ago - he referred me to a neurologist and for and MRI - which is how i  finally got my CP diagnosis. Even under numerous  ortho consultants as a child, including GOSH, they never mentioned CP as a possibility, just fixated on my toe walking and Achilles tendon.  It came as a complete shock to me (and my parents) that it was actually CP as the underlying issue.

    Once the I'd had the MRI and diagnosis at 23/ 24 i had to ask to go back to the neurologist to discuss the results (and this was private health care)  as he was just going to discharge me - he was very non committal and basically said i was lucky it wasn't worse and said i was too old for any treatment other than baclofen, which I've been on since.  Basically I've been dealing with it on my own since, apart from self referrals to physios and pain management with my GP.  I've never been assessed by a consultant. other than that original scan.  Are other people 'under' a consultant long term?



  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    Hi @Regan101 and a warm welcome to the community!
    I'm sorry to hear that your back has been so painful, and that you have been feeling low. Please do get in touch if there is anything we can do and I hope you will be able to get some support soon. 
    Would it be possible to see a different GP?

    Community Partner
    Scope

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  • Richard_ScopeRichard_Scope Administrator Posts: 2,410 Scope community team
    Regan101 said:
    well the last ortho one i saw properly was 10 years ago - he referred me to a neurologist and for and MRI - which is how i  finally got my CP diagnosis. Even under numerous  ortho consultants as a child, including GOSH, they never mentioned CP as a possibility, just fixated on my toe walking and Achilles tendon.  It came as a complete shock to me (and my parents) that it was actually CP as the underlying issue.

    Once the I'd had the MRI and diagnosis at 23/ 24 i had to ask to go back to the neurologist to discuss the results (and this was private health care)  as he was just going to discharge me - he was very non committal and basically said i was lucky it wasn't worse and said i was too old for any treatment other than baclofen, which I've been on since.  Basically I've been dealing with it on my own since, apart from self referrals to physios and pain management with my GP.  I've never been assessed by a consultant. other than that original scan.  Are other people 'under' a consultant long term?



    There isn't a cerebral palsy consultant. So the impairment is treated by a multidisciplinary approach (in an ideal scenario). Neurology and musculoskeletal are probably the departments that we have the most contact with. Physio, hydrotherapy is often the solution. As I mentioned in my previous post It might be worth being re-referred to an ortho. There might be some orthotics that could help with the back pain
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Phil82Phil82 Member Posts: 50 Connected

    Hey Regan you sound just like me.

    Do you wear orthotics in your shoes? I'm 37 and until I got custom orthotics about 2 years ago my lower back was getting worse and worse it was so tight I could hardly stand up for 15 mins, walking round a Supermarket I had to lean on freezers etc to rest it. I also had a really bad stiff neck that used to crack all the time and my shoulders were so tight they were a mess. When I got my orthotics it all seemed to clear up pretty much straight away and I felt so much better.

    My biomechanics are slightly messed up and no one has ever worked out the reason why (I think it's now Spastic CP) apart from the fact my ankles are stiff. I think alot of the back pain I was getting was from the biomechanics which the orthotics resolved.

    Lower back issues are really common with people who pronate their feet a lot both Hypermobile and Hypomobile, I work with someone who is Hypermobile (extra bendy) and she had massive problems with her lower back when she got to her 30's and some days couldn't get out of bed. They were doing scans for bulging discs etc in the end all she needed was some insoles and lots of core strengthning excercises.

    Good luck I think an orthepedic appt is what you need I am after one too but first I have to convinvce someone that something is wrong with me.


  • Regan101Regan101 Member Posts: 4 Listener
    Hi Phil

    That's really interesting, thank you.

    No I don't currently wear any orthotics but I used to as a child. Definitely something worth looking into.  How amazing would that be?! My biomechanics are definitely all out of whack. 

    😊


  • Phil82Phil82 Member Posts: 50 Connected

    I had orthotics when I was teenager and then gave up on them they aren't the comfiest of things but then a couple of years ago everything started tightning up. Luckily my private physio specalises in biomechanics and orthtoics and I got some custom made ones which did the trick and they have adapted them further recently.  

    Hospitals have orthonics departments though which can provide such things but how you get access to this is a mystery to me I think you need a diagnosis first through orthopedics.





  • Eve53Eve53 Member Posts: 15 Courageous
    You both sound very similar to me - my lower back causes me a lot of trouble and I have been finding it very difficult to access healthcare. I have custom orthotics in my shoes (bought privately when I was in the USA), which have helped a lot with my high arches, but not my lower back. 
  • Phil82Phil82 Member Posts: 50 Connected

    I forgot to mention you can probably get the GP to refer you to podiatry easily enough, these people are meant to be the biomechanical experts but they basically wiggled my foot and watched me walk down a corridor and declared my walking gait "was within the range of normality". They do offer free insoles although they aren't great and I was never convinced the ones they gave me were correct for me, but at least it might be a start for you.

    If they think you have bigger issues than what they can resolve they can write back GP advising you to be refered on to someone else.

  • Phil82Phil82 Member Posts: 50 Connected
    Eve53 said:
    You both sound very similar to me - my lower back causes me a lot of trouble and I have been finding it very difficult to access healthcare. I have custom orthotics in my shoes (bought privately when I was in the USA), which have helped a lot with my high arches, but not my lower back. 


    High arches suck mine are causing me all sorts of problems now, I'm sure my ankles are getting weaker and weaker and my toes are getting arthritis so I'm rolling out even more and have now hurt my ankle, it doesn't help that I have massive leg muscles which does all the damage to my feet. My walking has deteriated rapidly in the past few weeks and I'm worried it's the start of something bad/more perminanant damage.


  • Eve53Eve53 Member Posts: 15 Courageous
    Yes, I’m also standing and walking on the outer soles. I can’t seem to shift the tendinitis it’s given me.
    My insoles are falling a part, so I should look into getting some new ones. I can’t go without them now, although they are very hard for my (delicate!) soles! Is it an Orthotist or Podiatrist I need to ask my GP for?
  • Phil82Phil82 Member Posts: 50 Connected

    They will send you to podiatrist first I would think.

    My feet are killing at the moment and I am struggling to walk any great distance and have constant foot pain I think I have metersalagia and I am rolling my ankles even more, I think my new orthotics have tried to correct me to much and keep trying to force my tight muscles in a direction they don't want to go (mainly forwards) also like you say they are very hard and this has probably brought on the issues even more.

    I went to he GP the other she was going to send me to Podiatry but when I said I had already been she decided to take x Rays of my ankle and feet instead. I don't think anything is broken so that will probably be a dead end and I don;t think she will refer me further until they actually get a diagnosis of what the main cause is.






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