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Thread: cerebral palsy and scoliosis of neck

  1. #1
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    cerebral palsy and scoliosis of neck

    hi

    i have scoliosis of neck. what can be done to stop it getting any worse? my neck every time i move it it clicks. my pt doesnt no that much(i knew more about the clinic's product range by doing 5 minute google search than she did) about splints. i dont like pain meds.

    i have botox in my right ankle when I was 14 and it cost the movement of ankle so im NOT keen to have injected around c4/5 and c1/2 of neck

  2. #2
    Strengthening the muscles on the weaker side may help.

    If one side is stronger than the other (Are you a hemi?), it can worsen pulling. By strengthening the weaker side, it may help improve the degree of scoliosis.

    Long term use of a splint can weaken the muscles needed to support your head/neck.

    Has your doctor written an rx for physical therapy in an attempt to treat the scoliosis?

    I'm a hemi who became a quad. When I was only a hemi, I leaned badly to the left. It's worse now, but I'm in my late 40s and have a lifetime of CP, 17 years as a quad. My left side is shorter than my right, not just smaller. My left arm is significantly shorter as is my left leg. CP can do that to us as we grow up.

    On the botox injections, make sure you go to an expert in using it for CP if you opt for it. All disabilities are not created equal and nether are body parts.

    Hope you find something that helps.

  3. #3
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    Quote Originally Posted by LaMemChose View Post
    Strengthening the muscles on the weaker side may help.

    If one side is stronger than the other (Are you a hemi?), it can worsen pulling. By strengthening the weaker side, it may help improve the degree of scoliosis.

    Long term use of a splint can weaken the muscles needed to support your head/neck.

    Has your doctor written an rx for physical therapy in an attempt to treat the scoliosis?

    On the botox injections, make sure you go to an expert in using it for CP if you opt for it. All disabilities are not created equal and nether are body parts.

    Hope you find something that helps.
    Yes im a hemi right side

    adult pt is not offered in nz for long term cases that are not acc

  4. #4
    Quote Originally Posted by cyfskid View Post
    Yes im a hemi right side

    adult pt is not offered in nz for long term cases that are not acc
    Left hemi here before SCI.

    That bites you are not offered PT.

    Any chance you are friends with a good PT (or know someone who is) who might offer exercise suggestions?

  5. #5
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    Quote Originally Posted by LaMemChose View Post
    That bites you are not offered PT.

    Any chance you are friends with a good PT (or know someone who is) who might offer exercise suggestions?
    it does

    and im not might try some plant based stuff

  6. #6
    Hi cyfskid,

    I think what you need first and foremost is an orthotist, and preferably a doctor, who has significant experience managing CP. Being a spastic diplegic myself, my experience has been that most PT's, most orthotists, and even most orthopedic surgeons know less about CP than I do.

    As a child, were you ever treated by anyone you felt was competent at managing CP? If so, start there. Call your old PT or your former doctor (even if his job title has the word 'pediatric' in it), and ask for recommendations on where you could go now, as an adult.

    If you were never personally in contact with anyone you felt you could trust to do the right thing for you, widen your horizons a bit. Find out if there are any schools or outpatient treatment centers for disabled kids in your area, and then find out which doctors, PT's and/or orthotists they work with. If they can't personally see you, they'll at least know where to send you.

    Finally, I don't know if you're that lucky over in New Zealand, but where I live (which is Belgium), several entities called 'CP reference centers' were established about six years ago at different academic hospitals. As an adult, I never thought of going there until I had no other choice left, because they are staffed by people who overwhelmingly deal with children. It occurs to me that I might be part of the first generation of children born with CP for whom surgery and medication have always been viable options, and who therefore grew up with the idea that something could actually be done about their disability. Anyway, what I'm trying to say is, if you have anything like our 'CP reference centers' anywhere near you, find one and go there, because it will dramatically increase your chances of dealing with people who actually know what they're talking about.

    No matter how you do it, I would emphatically recommend finding *some* kind of medical professional who knows the ins and outs of CP. Even if it turns out you don't really need it now, it might help a lot down the road for you to know where to go with any CP-related issues that might crop up in the future.

  7. #7
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    Quote Originally Posted by Saranoya View Post
    Hi cyfskid,

    I think what you need first and foremost is an orthotistyeah he thinks im a pre madona, and preferably a doctor, who has significant experience managing CP. Being a spastic diplegic myselfthey say "spastic diplegic left hip" and then right hemi in the same breath, my experience has been that most PT's, most orthotists, and even most orthopedic surgeons know less about CP than I do.

    As a child, were you ever treated by anyone you felt was competent at managing CP?thanks to dad no If so, start there. Call your old PTmaybe but he would want money before he spoke with me im trying to get some notes off him at moment but not having much lucky or your former doctor (even if his job title has the word 'pediatric' in it)the recepist pull my notes up on the computer and hungs up on me because im over 16, and ask for recommendations on where you could go now, as an adult.

    If you were never personally in contact with anyone you felt you could trust to do the right thing for you, widen your horizons a bit. Find out if there are any schools or outpatient treatment centers for disabled kids in your area, and then find out which doctors, PT's and/or orthotists they work with. If they can't personally see you, they'll at least know where to send you.

    Finally, I don't know if you're that lucky over in New Zealand, but where I live (which is Belgium), several entities called 'CP reference centers' were established about six years ago at different academic hospitals. Anyway, what I'm trying to say is, if you have anything like our 'CP reference centers' anywhere near you, find one and go there, because it will dramatically increase your chances of dealing with people who actually know what they're talking about. in short no but i do live in a town where the sci and bi rehab centers are. had the head of the sci ward say there is no place in the system for adults with cp

    No matter how you do it, I would emphatically recommend finding *some* kind of medical professional who knows the ins and outs of CP. Even if it turns out you don't really need it now, it might help a lot down the road for you to know where to go with any CP-related issues that might crop up in the future. im trying
    my answers in red

  8. #8
    cyfskid,

    I'm not sure what the law says in New Zealand, but it would surprise me if it allowed medical professionals to deny you access to the information they have about you.

    That said, some people need a little prodding. I had trouble getting my medical records out of my pediatric specialist. After many polite phone calls both by me and my family doctor, followed by a written request, I finally solved my problem by calling his receptionist and informing her, just like that, that if they refused to send me my records, I'd simply show up there in person and stay until I got them straight from the doctor.

    I subsequently did just that, and while they kept me waiting a while, I eventually got what I needed.

    It's not the most elegant solution, in that it will quite likely destroy any goodwill you may have had left with the person in question. But from your description, it doesn't sound like you have that much goodwill to loose in the first place.

    You might try this technique both with your PT and with your former doctor, and once you have the information you need in hand, go to *any* doctor you think you can trust (in my case that would most likely be my family doctor, or possibly my current orthopedist). They might not know much about CP themselves, but they have the resources to find out who the specialists in your country are, and if you have their support, you *will* get an appointment if you need one.

    In my case, had I made an appointment at the CP center on my own, I would have had to wait six months to even be seen for the first time. But since my orthopedist had my back, he called in a favor with an old buddy of his at the same hospital, and I was seen within three weeks. I'm just telling you this to illustrate how important it is to find at least one medical professional who takes your situation seriously, even if that person is not quite the ideal doctor for you. Keep looking until you find one!

  9. #9
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    Quote Originally Posted by Saranoya View Post
    cyfskid,

    I'm not sure what the law says in New Zealand, but it would surprise me if it allowed medical professionals to deny you access to the information they have about you.they will be in dutch

    That said, some people need a little prodding. I had trouble getting my medical records out of my pediatric specialist. After many polite phone calls both by me and my family doctor, followed by a written request, I finally solved my problem by calling his receptionist and informing her, just like that, that if they refused to send me my records, I'd simply show up there in person and stay until I got them straight from the doctor.

    I subsequently did just that, and while they kept me waiting a while, I eventually got what I needed.

    It's not the most elegant solution, in that it will quite likely destroy any goodwill you may have had left with the person in question. But from your description, it doesn't sound like you have that much goodwill to loose in the first place.

    You might try this technique both with your PT and with your former doctor, and once you have the information you need in hand, go to *any* doctor you think you can trust (in my case that would most likely be my family doctor, or possibly my current orthopedist). They might not know much about CP themselves, but they have the resources to find out who the specialists in your country are, and if you have their support, you *will* get an appointment if you need one.

    In my case, had I made an appointment at the CP center on my own, I would have had to wait six months to even be seen for the first time. But since my orthopedist had my back, he called in a favor with an old buddy of his at the same hospital, and I was seen within three weeks. I'm just telling you this to illustrate how important it is to find at least one medical professional who takes your situation seriously, even if that person is not quite the ideal doctor for you. Keep looking until you find one!
    maybe i should just work on the mental stuff and let the cp do what will

  10. #10
    If you have pain and/or significant mobility problems specifically due to your scoliosis, that might influence 'the mental stuff' more than you think. Attempting to tackle that without doing anything about the root cause (and unless it is very advanced, most scoliosis cases can actually be improved significantly with the right treatment) will only make things worse.

    Of course, that's just my opinion. I am not in your body, and I have only the vaguest idea of what you have already tried. I can only wish you the strength to keep trying, and failing that, the courage to accept what you can't change.

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