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#1 | ||
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Member
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Hello, everybody!
![]() Thank you so much, DocJohn, for creating this forum. I think there is considerable need for it. I am LIZARD, mom to Drew, 12, dx'ed with autism at 2 1/2 and a 13 mm ACM I at 5 1/2. So far, so good, after a couple of nsg opinions. We went to TCI 2 years ago and had a full eval to determine any ACM-related symptoms Drew has that might warrant surgery, and I suspect that, even though we were told that nothing seemed to warrant surgery anytime soon, any impact the ACM may have on his autism, especially since I run across parents all the time whose kids have both conditions, should be given serious thought and discussion. I adore my nsg (I have always had hydrocephalus, and yeah, I wonder about any connection it may have to Drew's ACM as well), and I was relieved to hear TCI (Dr. Bolognese) corroborate Dr. R's thoughts about any future surgery for the ACM, but I wonder what--if any--improvement Drew might have from surgery. What if he never has the surgery because he doesn't have "classic" debilitating ACM symptoms, yet we learn that others have seen significant improvement in their autism issues because of it?? I do know of some who have, in fact. I have had multiple brain surgeries myself and appreciate the seriousness of it and the risks involved, but I can't help but think it should be more openly discussed. Thoughts?? Good? Bad?? Ugly?? ![]() ![]() Thanks! LIZARD ![]() |
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#2 | |||
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Grand Magnate
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Hi Lizard . . . I'm here!
![]() I don't know too much about this condition (it's relatively rare though still, isn't it?), but my sister was dx with syringomyelia a few years ago. I have MS, and many of the worst of my lesions are in my spine. We seem to have a lot of the same symptoms and concerns, so that's why I put my hat in to be a moderator here. Welcome, and nice to meet you! Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#3 | ||
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Member
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Hey, Cherie.
![]() It's actually hard to say how common ACM/SM is. Many people have it for years and years and don't even know it because they never have symptoms, or their symptoms are mild and vague, so they never get dx'ed. My son was actually one of the weird situations where an MRI was done on him to check for anything that might have contributed to his autism (especially since his head blew up like a balloon during his infancy), and although I was immensely relieved to find out he didn't have hydrocephalus (which I have had all my life--nearly 40 years), you can probably imagine what it felt like to hear about the ACM! ![]() So...you have MS? I'm sorry. ![]() I'm headin' to bed shortly (gotta get up at 6 am to throw kids out the door ![]() ![]() Have a great night! LIZARD ![]() |
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#4 | |||
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Grand Magnate
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Sorry to hear your son has this condition.
![]() ![]() It's not likely that I have ACM/SM, since I have the tell-tale lesions in both my brain and spine. Normally ACM/SM would not cause damage in the brain too, would it? On the other hand, my Neuro is of the opinion that maybe my sister's dx might turn out to be MS in the long run, mostly because I have it. She doesn't have ACM either, just SM, and I guess this scenario is somewhat rare too. MS is the same in that a lot of people are never dx because they just don't suffer much from the symptoms. My first two attacks caused paralysis (took 18 months all up to heal as well as I was going to), so there wasn't much doubt that it was something significant going on. I am doing relatively well though, considering I've had this disease for almost 16 yrs now. I consider myself lucky. Well I sure hope that your son does not have too many problems from this. You certainly have your hands full with stressful concerns! Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#5 | ||
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Truthfully, I think the autism is the most significant issue he has, and I don't doube that it's connected with the ACM, but we might never know for sure.
![]() ![]() ![]() ![]() As for you... ![]() ![]() ![]() Curious situation with your sister. No MS lesions, that anyone knows of? No Chiari, for sure? Even a tiny herniation can result in severe symptoms for some, so she should be checked very closely. That's where Drew is really lucky. His herniation is considered fairly large, so it would seem that he'd have a lot of problems with it, but so far, that hasn't been the case. Thank God. ![]() Sleep well tonight. I'm thinkin' about thinkin' about headin' to bed myself. ![]() LIZARD ![]() |
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#6 | |||
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Grand Magnate
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Quote:
It it is odd about my sister. She's had plenty of MRI's, and the only thing that's shown up is the syringomyelia. Apparently she definitely does not have Chiari either. ![]() Her worst symptom is swallowing, although it might not be related to the syringomyelia either. She has terrible fatigue, TMJ, and a number of other symptoms that are so similar to MS though. Time will tell, I guess. Autism can be a struggle, eh? I have a number of friends who have kids with this condition, some fairly effected, and others not so much. Interesting that you are connecting this to the Chiari; I haven't really had enough experience with this to have considered that. Do you have any information on this condition and Chiari, by chance? Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#7 | ||
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Member
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Quote:
Once I found out about the ACM, I couldn't help it. It was especially hard to dismiss after reading so much about the cerebellum's involvement. If it's small or lacking in Purkinje cells (the cells mainly responsible for the cerebellum's composition), it could certainly be implicated if the tonsils are herniated, huh? I think so. Someone I know from the autism forums I'm on also has a daughter who has both, and she has a website that gets into this. I'll see if I can find the addy and send it later. ![]() The autism has been difficult to deal with, but we're also really fortunate that Drew isn't on any meds for behaviors and progesses well. ![]() ![]() ![]() ![]() Hey, I gotta make breakie for this gang, so must go. More later! ![]() LIZARD ![]() |
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