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    Old 01-20-2005, 11:26 AM   #16
    NJenn
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    Re: cp symptoms increasing with age

    Ok, I'd love some more specifics on your foot surgeries Musicmaker and JellyJRFan. I'm going back to the physiatrist and the pain doc, and am going to (reluctantly) talk about surgical options with them. Through reading the very limited research on adults with CP, and other conditions that cause spasticity of cerebral orgin, it seems like surgery is still an option for us outside of our childhood and adolescent years. I'd like to take the least invasive approach (afos, night splints, regular stretching), but I know it's probably not enough.... would be interested in thoughts from both of you.

    NJenn

     
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    Old 01-20-2005, 11:58 AM   #17
    MichelleAnne18
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    Re: cp symptoms increasing with age

    Hey. I've had foot surgeries too. To remind you, I'm 20, and I have what doctors call "mild" spastic CP which affects my left side.

    I have had my achilles (heel cord) lengthened twice-- Once at age 15, and once, on 1/10/2005.

    I also just had on 1/20/2005 (10 days ago) a Split Anterior Tibial Tendon transfer to help prevent chronic ankle sprains and help with my gait.

    I have done the intensive PT, but never an AFO. I will be doing an AFO after I get this cast off. I have used Baclofen tabs and Soma tabs for muscle tightness and spasms.

    I have had the worst luck with orthopedics my entire life. My case is "mild" but it does significantly impact my life.. I cant walk long distances, I fall alot, muscle imbalances cause pain in my knees, ankles, hips and lower back.

    I think that should answer your questions, but let me go back and check and I'll reply again if I need to
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    Old 01-20-2005, 12:00 PM   #18
    JellyRJFan
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    Re: cp symptoms increasing with age

    Well, when I was younger I had a split anterior tibial tendon transfer/recession/lengthening/release on my right foot. A couple years ago I had a boutenierre deformity (hammer toe) of my right second toe, which they fixed, along with a release of the adductor of the great toe, PIP joint arthroplasty (whatever THAT means, haha) and pinning of the joint along with z-plasty of the volar skin. (can you tell I copied the last part from my medical records?
    If I had the option to do the hammer toe repair over, I definitely would NOT. It was extremely painful, and now, since my toe can't bend (it couldn't before, but it was curled up), I still trip on it and now it's prone to breaking.

     
    Old 01-20-2005, 12:01 PM   #19
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    Re: cp symptoms increasing with age

    arthroplasty- surgical reconstruction or replacement of a malformed or degenerated joint

    I looked it up in the dictionary

     
    Old 01-20-2005, 12:14 PM   #20
    musicmaker650
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    Re: cp symptoms increasing with age

    Hello again NJenn,
    heel cord lengthening was one of my first surgeries. My right foot was severly arched and I walked on the inside of it. It was surgically flattened, I had no arch at all. Both feet are flat to this day. In all I have had 4 surgeries on my right foot and 2 surgeries on my left foot. My left leg and foot have always been the stronger than my right, and I am strictly left-handed.

    In my case, this is all just wear and tear on my body at 54. Some of you will "feel" your CP much younger unfortunately. I'm just fortunate that I have lasted as long as I have mobility wise. I come from a long-lived family. My grandmother lived to be 103, grandfather 99. My mom is 85, my father is 83... Imagine what shape a Palsy like me, will be in at 85! Yikes!

    Modern Othopedics has come a long way since I was a child. My doctors always tell me that I have aged well. Of course, some days are better than others

     
    Old 01-20-2005, 03:34 PM   #21
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    Re: cp symptoms increasing with age

    jimslade,

    Hello!!! I hear every word you wrote! I am 39, gainfully employed, and I have spastic L hemiplegia. I used to say I walked with almost no signs of problem, but that is not true anymore. I have a brace to help with a foot drop issue and I use a cane. My spasticity has gotten much worse, with my tight areas being my hamstrings and hip flexors. There is a big communication gap with the medical community and the differences between children with CP and adults. YES! your body will give up on the compensation methods it used when you were younger. You will have increased wear and tear on your joints and muscles at a higher rate than people who are aging "normally".

    I have been getting botox injections for the past 2 years. They have been successful in most areas but not all. I have been having more wear in my lower lumbar area. Recent epidural injections have helped with that and I am scheduled for another next week. I have not been given baclofen mostly because of the side effects. How are you with them??? I was just given a prescription for zanaflex which is supposed to give the dame results but be a little nicer with the drowsiness and so forth.

    Which brings me to say this......has anyone out there tried zanaflex?? Can I get some feedback? I should probably post this separate.

    Anyway, it is very nice to meet you jimslade. And I hope we will hear from you again soon.

    Lastramy

     
    Old 01-20-2005, 07:13 PM   #22
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    Re: cp symptoms increasing with age

    Nice to see you posting, Lastramy

     
    Old 01-21-2005, 04:51 AM   #23
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    Re: cp symptoms increasing with age

    Thanks JellyRJfan! I have been out for a while! I hope everything is going well for you.


    Lastramy

     
    Old 01-23-2005, 10:17 AM   #24
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    Re: cp symptoms increasing with age

    Quote:
    Originally Posted by NJenn
    5. I regularly read peer-reviewed literature about CP and other conditions that cause spasticity (stroke, Parkinson's, TBI, SCI, etc.) Medical information on the internet, by and large, is highly suspect and fraught with errors--I avoid it and go straight to scientific sources. I go to my doctor armed with the knowledge of what works and what doesn't. I don't rely on him to know all the answers.
    Could you recommend some books/other scientific publications about CP & other spasticity-causing conditions?

     
    Old 02-01-2005, 10:54 PM   #25
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    Re: cp symptoms increasing with age

    Lastramy,

    Thank you for the warm welcome. Part of the reason I had the baclofen pump put in was the fact that, like many people, lower doses of oral baclofen don't have too much of a relieving effect for me. Higher doses of oral baclofen cause a lot of drowsiness for me. Botox injections were helpful for me. I never had any pain at the injection site.

    One of the things that has worsened for me is going down stairs. When younger I was able to fly down stairs. Now it is a much jerkier, slower task. My left knee seems to be a bit of a culprit here, and it has been one of the better portions of my body. I knew that growing older was going to be rougher on me than on others. The effects from aging just seem to be coming a bit quicker than I anticipated.

    I agree with you on the attitude of the medical community. The neurosurgeon who put in my baclofen pump didn't seem to see a big reason for me to have one, and made a comment to that effect the day of my surgery. Well, he doesn't have to deal with cp, and I do. A previous neurologist told me he could give me oral baclofen or dantrolene, but couldn't do anything else for me.

     
    Old 02-04-2005, 10:29 AM   #26
    NJenn
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    Re: cp symptoms increasing with age

    Quote:
    Originally Posted by Strawberry1
    Could you recommend some books/other scientific publications about CP & other spasticity-causing conditions?

    I can't really give you any links because this board won't let us post links. I encourage you to seek out a university library and do a medline or PubMed search. the librarian can show you how to do it, and you should be able to retrieve journal articles at minimal, or no, cost.

     
    Old 02-04-2005, 05:25 PM   #27
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    Re: cp symptoms increasing with age

    Jimslade,

    Sorry I didn't get right back to you. I agree totally on the stairs. I had my hipflexors botoxed and the downside to that was the weakness made it so I couldn't get my leg up to climb them without a lot of difficulty. They decided to leave this site out and now I can tackle the stair climbing, but I have more tightness and pain.
    I have noticed problems going down steps too. When I extend my leg to go down, I get more shaking at the knee.

    And yes it seems like the pain issues came out of no where! One day good and then BOOM!

    I am very happy to hear that the botox is working for you! Sometimes I am not sure if it is working as it should or not, but then when you go without it you find out the hard way that even a little help is much better than none at all.

    Keep thos posts coming!!!!!!

    Lastramy

     
    Old 02-04-2005, 05:34 PM   #28
    JellyRJFan
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    Re: cp symptoms increasing with age

    I get shaking at the knee when I go down stairs too! And all this time I thought I was just weird.... :-P

     
    Old 02-04-2005, 06:02 PM   #29
    lastramy
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    Re: cp symptoms increasing with age

    JellyRJFan,

    Well if you're weird then move on over and let me join you!
    Isn't it great to know that you are not alone! It makes me feel so good when I see the words...."me too!"

    Take care!

    Lastramy

     
    Old 02-04-2005, 07:47 PM   #30
    musicmaker650
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    Re: cp symptoms increasing with age

    I went through a "left first great toe fusion at MTP Joint" last Thursday the 27th of January. The first metatarsophalangeal joint (MTP) is the joint where the big toe meets the foot. THE FUSION IS AIDED BY INSTALLING A METAL PLATE AND SCREWS! I must admit that I had forgotten just how painful big toe surgery was. Spasms for me were a thing of the past, until this procedure. I wake up in the middle of the night and have to take a pain pill... It's been just a week and I have not taken a pain pill yet today. I'll have one handy by my bedside tonight. It is "hell" getting old isn't it...

    Last edited by musicmaker650; 02-04-2005 at 07:57 PM.

     
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