unexplained knee pain

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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unexplained knee pain

Postby Chiari10 » Fri Jan 22, 2010 5:17 pm

My daughter, Shelbi, 13, just started complaining Wed. afternoon with knee pain. She says she didn't hurt, twist, turn it or anything and there are no signs of injury, swelling or any problems. Just pain a 4 on a scale of 0-10. Does anyone else have unexplained pain like this in their knees that would be associated with CM SM?, or is it probably unrelated? I always overeact and don't want to call her NS if this isn't common.

Thanks,
Tina Peters
Shelbi 13yrs CM,SM,basilar invagination, Moya Moya
Chiari10
 
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Re: unexplained knee pain

Postby memom » Fri Jan 22, 2010 6:23 pm

Hi

Yes, my daughter has knee pain also. In her case, she started off prior to surgery with leg weakness that became worse and worse. Now (post surgery) when she over does it, the weakness turns into pain that settles behind the knee for 24 to 48 hours. NS is calling it neurogenic pain - caused by damaged nerves. Pain can be intense at times, 5 - 8 on scale.

I realize not everything is related to CM/SM but in her case NS thinks it is. She has not been diagnosed with connective tissue issues at this point. We see Rhuematologist in April. I hope this helps. Let us know how things turn out. Good Luck,

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: unexplained knee pain

Postby lcolangelo » Fri Jan 22, 2010 11:13 pm

My daughter also has pain behind her knee-- quite unbearable at times-- I'm sorry for your daughter-- but I like you never know what is related and what isn't! So many symptoms!! Hope she is feeling better!
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Re: unexplained knee pain

Postby wondermatx » Tue Feb 16, 2010 2:03 pm

my son, has unexplained knee pain. Ortho which it took me 3mo to get, told me that knees looked good on xray unless he isn't being honest with me(which is the feeling i got), maybe he didn't have a name for it. My son's neurosurg. has never heard of knee pain and CM1 or syrinx, or tethered cord, well there are plenty of symptoms they aren't aware of... unless it's life threatening it seems like they don't care.
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Re: unexplained knee pain

Postby memom » Tue Feb 16, 2010 8:02 pm

Hi Wondermatx -

Who is your NS? Sounds like maybe you need to see a specialist in CM/SM. Our NS tells us that many CM/SM folks have connective tissue disorders and others things that can contribute to these kinds of symptoms. We are seeing a Rhuemotologist in April to look further into this. Something is going on, how could all of these CM/SM kids have similar symptoms and it not be related? Keep us posted on your progress, Good luck and best wishes...

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: unexplained knee pain

Postby wondermatx » Wed Feb 17, 2010 4:11 pm

thank you lauri, wow, it would make a lot of sense uh?
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Re: unexplained knee pain

Postby jlb555 » Sat Feb 20, 2010 10:43 pm

My daughter is 12. She has a 3 mm tonsiller herniation and many of the signs of Chiari. We are having trouble getting a diagnosis, but she has been complaining of severe knee pain, unexplained, and all the time. She says it is severe, about a 6 on a scale of 10. Now it has also moved into her lower leg. It hurts all the time. Laura was diagnosed with a 3 mm tonsillar herniation after an onset of acute headaches, nausea, vomiting, noises in her ears, vision problems with floaters, white spots, halos, weight loss, and a positive EEG for activity in the brain. She has also suffered severely with bladder inconintence. I had taken her to a number of doctors for that and they said nothing was wrong with her. Our neurologist says the herniation has nothing to do with it, that it is only 3 mm, but I know in my heart it is CM. I am not an overactive mother. I am a medical transcriptionist and understand the medical side of things, but Laura is severely ill. They have put her on Topamax for the severe migraines, but if she misses just one dose all the signs come back. Back to the knee pain, yes, she has that too. It has been going on for months now and has not went away.
jlb555
 
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Re: unexplained knee pain

Postby memom » Sun Feb 21, 2010 9:20 am

Hi Jlb555

I am sorry your daughter is in so much pain. MY thoughts are with your entire family. You need to see a Neurosurgeon who is considered an expert in CM/SM.. Where are you located? If you tell us, folks will chime in and help you find one close to your home. My daughter was misdiagnosed by both a NS and NL before we found a NS who specializes in CM/SM. Keep pushing until you find one!!!!

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: unexplained knee pain

Postby Catherine » Sun Mar 07, 2010 8:14 am

I was just reading up on some of these posts. My daughter just started complaining about knee pain also, after her decompression. I don't remember her complaining before but she would fall sometimes because of her knees giving out.

Crystal
Catherine
 
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Re: unexplained knee pain

Postby Chiari10 » Sun Mar 07, 2010 9:25 am

Hey,
Sorry it has taken me so long to update and thank you guys all for responding. Shelbi's NS is Dr. Oakes in Birmingham, AL and her NL is Dr. McGrath in Birmingham. We are in North AL just off of 65 about 2 hours south of Nashville and 1 1/2 hours north of B'ham. Dr. Oakes does specialize in CM/SM, not 100 possitive about Dr. McGrath, but she goes for her MRI in a couple of weeks, then we will get to see her NL. She has been doing better and complaing less about it. But she was also coming up on her class trip to DC and I think she knew if she complained that we wouldn't go, because I had already decided not to go when she kept complaining. But anyway we made it through that trip and we walked a lot and I don't think she complained as much as all of us adults did. :lol: So now I am unsure what to make of it. But just from things I have read all of these weird symptoms seem to maybe come and go without explanation. But I have kept it written in my calender so I can tell her NL when we go to see him in a couple weeks.
Thanks again for all of the input and I will keep posted about how her MRI and dr. appt. goes.

Thanks,
Tina Peters
Shelbi CM, SM, Basilar Invagination, MoyaMoya
Chiari10
 
Posts: 23
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