Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

A hidden condition

WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering

Hi, I’m in my mid-twenties and I live with Cerebral Palsy.

For many years from around the age of 14 years old, I have experienced increased levels of pain in my hips and back as well as other symptoms. This seemed to become worst during my periods. The pain increased very slowly over time and I just put it down to my Cerebral Palsy and changes in my daily routines. I didn’t think to go to the Doctors. Not for one moment did I ever consider that these symptoms were being caused because of a completely different condition.

However, I have learnt that this is exactly what it is. Following quite a rapid deterioration in my health and severe stomach pains, my Mum insisted I go to the Doctors and describe how I had been feeling. I did this reluctantly and following scans to rule out possible scenarios, I was referred to a specialist clinic. Here, following examination and further scans, I was given a diagnosis and told I would need an operation to firstly confirm diagnosis and the extent of it and secondly, put a treatment method in place. I was also told that it was a condition that I would have for the rest of my life and that was more complicated due to my Cerebral Palsy. To this day, I still don’t know how I felt as we left that appointment and still don’t know how I feel about the diagnosis. To me, it didn’t make sense, I had Cerebral Palsy and this was the cause of all of the pain, how an earth could this be something else. I understood all that I had been told and took it on board but I think there was still a part of me that believed or hoped that when I had the operation the diagnosis wouldn’t be confirmed and it was all a mistake.

The operation took place and I woke up in recovery still believing or hoping that I would be right and the diagnosis would be wrong. The surgeon came to see me and explained that during the operation they had found much evidence which led to the diagnosis being confirmed and explained the extent of the condition to me and what it would mean for me long term. I must say I am extremely grateful to my wonderful surgeon and their team for treating me and for looking after me so well, some people in our NHS truly are amazing. The surgeon also explained that it was highly likely that I have had the condition for a number of years but due to the similarities in some of the symptoms it was easy for the condition to go undetected and is not easily diagnosed in a person without CP.

I feel as though now is a good time to level with those of you who are reading this, knowing the impact that this condition will have on my future is something I am still coming to terms with, but at the same time it is about acknowledging what is right for me, my body and my quality of life. I am extremely fortunate and it is about remembering this. I want to be able to have a positive impact on the world and support people, perhaps talking about my experiences is one way of doing this, we shall see.

If I may, I would please like to share one experience with you, from when I was about 15 years old. I had been experiencing increased levels of pain in my hips but scans were not showing anything physical to explain this at this point, which was positive news. As a result of this I was referred to a rehabilitation clinic for pain management as they believed it was possibly related to something neurological. I had to see one of the Doctors who ran this clinic and it is probably one of the worst experiences I have ever had with a medical professional. Firstly, they asked me some questions. Then they carried out an examination. After they had done this, they sat down, looked at me and said “Sometimes we think we imagine pain for many different reasons including to gain attention and I think that is what you are doing”.  I had literally just met this man and he was making judgements based on answers to a limited number of questions and what he had seen. I was so shocked because there is absolutely no-way I would do this; I know there are so many people out there who experience far worse than I do, both medically and in everyday life and I have always known this. This appointment led to me just feeling completely empty as I knew deep down there was something not right. It knocked my confidence, made me doubt myself, question what others thought of me and contributed to the already difficult battle I was having in learning to live with my CP. It also made me close up and made me very cautious about going to the Doctors.

Ten years on, knowing that I have a diagnosis that explains, not only why in recent months I have felt so unwell, but also some of the experiences in my teenage years, reflecting on this appointment, I have learnt that you have to trust yourself. I am a little sad as it impacted my teenage years and into my early adult life, however regret is not helpful and I believe my experience has helped me to grow into the person I am. For a number years, I have been living with a condition that no-body, including me, knew I had, if I can do this, I can do anything. During this time, I’ve done so much, often feeling very poorly but not often expressing it, and so now that I am being treated for this condition, the possibilities of what I can do are endless.

I would urge anyone, but particularly those living with CP, if you experience pain or discomfort that is out of your ordinary and it persists, go and get it checked or talk to your consultant if you have one. Living with CP is uncomfortable at times but you know your body and you know when something doesn’t feel right.

I have learnt many things from this including trusting yourself and how important it is to continue to seek medical support if you need it. I’m not ready to name the condition but in time I know I will be. I hope this is the first step on this journey.

Thank you for taking the time to read this.


Replies

  • Tori_ScopeTori_Scope Administrator Posts: 2,113 Disability Gamechanger
    Fantastic post, thank you for sharing @WestHam06. I'm sorry that you had a negative experience going to a doctor initially, but I'm really glad you now feel listened to and are getting the right treatment :) The community will be here for you throughout your journey.
    Online Community Coordinator, she/her

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • chiariedschiarieds Community champion Posts: 5,286 Disability Gamechanger
    edited November 17
    Hi @WestHam06 - thank you from me too for sharing, & I do hope that all goes well for you from now on. I've met some wonderful Drs, & also some not so good, & I know the latter can put you off from reaching out to other medical professionals. I'm pleased your Mum trusted in you, & insisted you sought advice. I've done the same in a way, as myself, children & 3 grandchildren all seemed to have a genetic disorder, so it was ever so important to find out what 'it' was to help them in the future. I researched, & found we had Ehlers-Danlos Syndrome (EDS), then I found that we likely also had another genetic order (Chiari 1 Malformation). This was met with incredulity with many Drs, & I fought for 10 years to raise awareness of this association with Chiari 1 Malformation that a few of us with EDS might have here in the UK for my family, as well as others..
    I found, as you also thankfully found, that you really do need to trust yourself; you are in the best position to know when something's wrong in your own body, even when you don't know what 'it' is initially.
    You have sent a very important message, which is yet so positive, showing yet again how much you want to help others, & we how much you've done, & continue to want to do.
    I agree, it's very important to everybody if they have pain, or any other inexplicable problems, to trust themselves too, & find the Dr that will work with them to find out. Thank you again for your insight. :)
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Thank you so much @Tori_Scope, I greatly appreciate it :) Thank you
  • Ross_ScopeRoss_Scope Administrator Posts: 1,391 Pioneering
    As mentioned above, the community is always here for you @WestHam06 and will support you all the way.

    Thanks for sharing.

    Best wishes
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    edited November 18
    Hi @chiarieds
                           How are you? Thank you so much for sharing part of your story with us, I am always touched when I hear of people committed to sticking up for themselves and their loved ones to find answers that will help to support them in the future. Please may I ask, when you were raising awareness, did you find people were embracing of what you were saying? I'm sorry to read that not all Doctors were as supportive as they should have been, I imagine that must have been difficult for you. Please may I also ask, do you feel things have improved for people who are living with Ehlers-Danlos Syndrome (EDS) and Chiari 1 Malformation?

    Thank you for your kind words, they mean a lot. I kept so much bottled up for a long time and now that I am finding ways to talk about them, I find I am feeling lighter (which I know is a strange description) and I am so grateful to the community for being so supportive and creating an environment which makes it feel safe to share. I am the most fortunate person in the world to have my Mum, she is my rock and has always been there for me, encouraging me, being in my corner and just being an all round great person.

    I hope I can support people in a positive way. I absolutely agree people do need to trust in themselves and feel able to seek medical help when they feel they need it. I hope I am able to help people feel able to do this, in my own way. 
    Thank you so much for your positive, insightful and encouraging words. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Hi @Ross_Scope
                                   Thank you so much for your kind and encouraging words, I greatly appreciate it. The support that the community continues to show is amazing and I really feel fortunate to be a part of the community, thank you for having me. Thank you. 
  • Ross_ScopeRoss_Scope Administrator Posts: 1,391 Pioneering
    And we feel equally fortunate to have you as part of the community @WestHam06 :) 
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • StayceStayce Member Posts: 350 Pioneering
    Hi @WestHam06

    I hope that your recovery is going well

    Just wanted to say what a powerful post. Truly demonstrating that we are the best advocates for our own health. To trust in ourselves because we do know our body and our CP best.

    I have had instances myself with healthcare practitioners where I’ve had to say please don’t palm this xx problem off as my CP.  I think its so easy for practitioners to do that. 

    Great post 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Hi @Stayce
                        How are you? Firstly, thank you so much for sharing with us, it can often feel like we are the only individual experiencing this so to hear others share some of their experiences or view points is both humbling and reassuring, thank you. I agree, I think it is so easy for practitioners to put everything down to CP and it is important that they recognise that we are individuals living with CP, not just CP with no other medical needs. Please may I ask, how do you feel you have generally been embraced by healthcare professionals in this sense, have they been understanding and willing to explore?

    Thank you so much for your kind and encouraging words, I greatly appreciate them. I want to ensure, to the best of my ability, that others with CP feel able to seek medical support when they need it and to ensure that they feel satisfied with the outcome. I, for too long, didn't seek this support due to experiences and this has left it's mark in terms of the degree of this new condition. I think, also, there are so many elements to this conversation, it's everything from the understanding of the practitioner, to the emotional impact on the individual. 

    I hope, along with many other passions I have, I can support others to shed a little light on this subject in my own way. Thank you for your support.  
  • Ross_ScopeRoss_Scope Administrator Posts: 1,391 Pioneering
    Just wanted to say that I very much admire your determination to use your experiences to help others @WestHam06 :) 
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • chiariedschiarieds Community champion Posts: 5,286 Disability Gamechanger
    Hi @WestHam06 - I've been better, thank you. When I realised myself & family were likely affected by both Ehlers-Danlos Syndrome (EDS) & Chiari 1 Malformation, my GP was enormously supportive.
    My turning point was a little bit of serendipity.....I met a Dr in an email community about Chiari 1 Malformation, &, at the same time I thought this also likely affected my family, he had just started noticing that a few of his Chiari 1 Malformation patients also had EDS. I didn't know at the time he was the assistant director of the Chiari Institute, the world's first hospital dedicated to this. This New York neurosurgeon supported me in trying to raise awareness here in the UK; it was difficult, as the medical fraternity here did not believe me.
    I was asked to write a chapter in the last book on EDS about this association between EDS & Chiari 1 Malformation by the founder of our EDS Support group. As most of the chapters were written by Drs, I asked this NY neurosurgeon, who had kindly proof read my chapter, to write an introductory paragraph, but the director of the Chiari Institute said he would be happy to do so. So they both really helped.
    Things are somewhat better for those that have EDS; it's recognised that EDS is more than a rheumatological disorder, yet here in the UK EDS Drs say you 'only' have instability in the joints between your neck & skull, whereas in the USA it is called 'complex Chiari 1 Malformation' in those that also have EDS. It's still difficult unfortunately to find a UK neurosurgeon that understands Chiari 1 Malformation + EDS (apart from the Walton Centre where one neurosurgeon has a 'Complex Chiari clinic'). Sadly I've found that USA neurosurgeons are about 10 years ahead of nearly all of ours. 
    One of our EDS medical advisors disagreed with what I've said, categorically saying Chiari 1 Malformation doesn't occur in people who have EDS. A USA geneticist had worked out that the odds of a person having both Chiari 1 Malformation & EDS were just over 3 milllion to 1, therefore there had to be an association. But there again, I'm not a Dr......& the NY neurosurgeons published a retrospective study of 'only' 2813 Chiari 1 Malformation patients, finding over 12% had EDS.
    What resonated with me in your post is that many patients are 'experts' about their own body, & know when something's wrong, but sadly some Drs know better. I'm ever so sorry about the bad experience you had when you were younger, & how it made you feel, which should never have happened. Just have to say your positive outlook now is just amazing. :)
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Thank you so much for your kind words @Ross_Scope, I really hope that my passion for this can become a reality, I'm just working out how this may look. Thank you for your ongoing support, much appreciated. :) Thank you
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Hi @chiarieds
                            Firstly, thank you so much for sharing part of your experience with us, I found it really interesting to read. I am pleased to hear that your GP was supportive but I'm saddened to read that some Dr's here in the UK are not as willing to support progressive development in understanding  Ehlers-Danlos Syndrome (EDS) and Chiari 1 Malformation as Dr's in the USA. I also don't understand professionals who disagree with patients who, as you say, are experts in their own bodies, and to some extent the conditions they have. Patients who are willing to share their experiences should be embraced and there are so many opportunities for development, I'm sorry to read that you have experienced this :( 
    However, the neurosurgeon you met on the email community sounds amazing and for me, is another shining example, of someone who is embracing the whole of their role and is willing to support people who can really contribute to progression. Please may I ask, what is the title of the book you wrote a chapter for? I always feel humbled when I learn of people sharing their experiences in order to support progression and future generations. Thank you so much for sharing your experience with me and for your kind words :) Thank you

  • chiariedschiarieds Community champion Posts: 5,286 Disability Gamechanger
    Hi @WestHam06 - Thank you for your kind words too, as I know you hope to continue to help others. The book was the 2nd edition of 'The Management of Ehlers-Danlos Syndrome,' & my chapter was 'Association of Ehlers-Danlos Syndrome and Chiari 1 Malformation.' As this was a new topic, I also had to provide a glossary as well as references!
    The NY neurosurgeon is amazing.....he's pioneered a new minimally invasive technique for Chiari 1 Malformation (CM1) surgery, shares his knowledge with other neurosurgeons, is one of a team of like-minded specialists trying to establish/standardise how CM1 should be looked at to better share research, & speaks at conferences for patients (the one good thing about Covid-19 was that I was able to attend this year's 'virtual' conference held in the USA). To say nothing of the fact that he was the very first Dr. to recognise EDS in his CM1 patients, & I think this was why he helped me raise awareness here in the UK, as I'd 'thought' EDS & CM1 were associated from researching. In the USA, he has raised awareness of EDS in the CM1 population, whereas here our EDS specialists are not interested in seeing how many of their EDS patients might have CM1.
    From being on Scope's online community, I now know that there's also a paucity of research into adult CP, which also saddens me. I must confess when I specialised in treating children with CP, I didn't think what their future might be, I was just doing the best I could 'then.' I have maintained an interest in neurological disorders, & am grateful for learning more about CP from this forum's members.
    As you say, many patients probably know more than their Drs, being 'experts' as they live with their condition, & also many have done their own research. I think this disarms some Drs, where to my mind Drs & their patients should be a team, working together.
    I gave lectures to nurses in the large hospital I worked in about physio in CP, which I initially found nerve wracking. The reward was when I got some of the nurses asking questions at the end which showed they'd taken things on-board. Keep up the good work, as I hope you can make a difference. Helping children understand disability is definitely worth working at. :)

  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    Hi @chiarieds
                           Thank you so much for sharing the title of the book with me, I will endeavour to try to find this as I believe it will be really interesting to read. The NY neurosurgeon certainly does sound amazing, I have complete respect and admiration for Dr's such as this. Wow, I imagine the virtual conference in the USA was insightful and informative, it is fantastic that you were able to join and perhaps in the future, even when people can attend in person, they will enable a virtual audience to join as well.
    I am in complete agreement, patients and Doctors should work together, as a team, in order to continue to develop and progress. I am saddened to hear that there is not the same acknowledgement of the association between EDS and CM1 here in the UK as there is in the USA, I really hope that this is something that changes soon. 
    As you say there definitely needs to be more research into adults living with CP, I know when I turned 18, it felt like falling off of a cliff edge very quickly, and that is in lots of areas of life. Having said that, medically I have had more support and understanding from Dr's as an adult then I ever did as a child, though I had the same paediatric surgeon for years and that's a whole new post :(
    The lectures that you gave to the nurses sound amazing and much needed, as a person living with CP, thank you for doing this. I can imagine it was nerve wracking but from reading your posts and speaking with you, I bet there were fantastic and very informative, they will have been of so much value to so many people. 
    I too, would like to wish you luck and I hope that the Drs here in the UK start to acknowledge the association between EDS and CM1. Thank you for your words of encouragement and I look forward to speaking with you more :) Thank you
  • StayceStayce Member Posts: 350 Pioneering
    edited November 21
    Hi @WestHam06

    I hope you are doing okay. 😀

    In in terms of the question you asked me about how I feel I have generally been embraced by healthcare professionals in this sense, have they been understanding and willing to explore. It really has been a mixed bag. Some have been amazing at understanding and willingness to explore, my Rheumatologist  and osteopath  particularly stand out here. Others just haven’t  wanted to listen and in some ways couldn’t  see past my CP (if that makes sense)

    Best  
  • janer1967janer1967 Community champion Posts: 5,225 Disability Gamechanger
    Some really powerful experiences you have all shared here and I salute each and every one of you. Just shows how supportive this community is  

    @WestHam06 I am gad you have a diagnosis and hope you get the treatment you need and support and over time come to terms with it, sharing has prompted others to share their stories too 

    You are a valued member of the community
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    edited November 23
    Hi @Stayce
                         I hope that you are well. Thank you so much for sharing your experiences with us, I'm pleased to hear that you have had particularly positive experiences with both your Rheumatologist and osteopath. However, it makes complete sense and I am saddened to hear that other professionals are unwilling to see past CP, I feel this not right and it is causing unnecessary pain and discomfort for some living with CP. Hopefully, we are starting to change this but as some have shared on here, I don't think it is exclusive to CP and I think sometimes it comes down to whether individual professionals have skills such as empathy. 
    Thank you so much for sharing. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 848 Pioneering
    edited November 23
    Thank you so much @janer1967 for your kind, considerate and encouraging words, I greatly appreciate them :) Thank you
Sign in or join us to comment.