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?? I can handle it.


Thanks!

LIZARD

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

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! (He does not have SM.) He doesn't seem to have any serious symptoms, so after a complete eval at TCI in NY 2 years ago, we were told to get another MRI at some point (in "a few years"), and essentially not to worry much about it. So far, so good...except that I really wonder how it ties in with his autism (and I'm sure it does; I have run into a lot of parents online whose kids have both Chiari and autism), but thus far, no one seems to want to address it. I have very mixed emotions about the idea of the surgery. After all, it is brain surgery, and it's more complicated than a shunt, which is all I'm really acquainted with, but what if it could really help him?? I don't expect it to "cure" him, but I do know many parents whose kids had decompression, and their symptoms improved dramatically. As well as he's doing, I would really welcome that.

So...you have MS? I'm sorry. I have heard some amazing stories about patients who said they presented with symptoms that were believed to be from MS and it turned out to be ACM/SM. I don't really understand how they're connected, but it's quite interesting. How are you getting along? How is your sister doing?

I'm headin' to bed shortly (gotta get up at 6 am to throw kids out the door ), but I hope we can keep gettin' to know each other.

Have a great night!

LIZARD

Sorry to hear your son has this condition. It's bad enough when we have to put up with medical issues . . . but when it's our kids.

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

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. I know that neuroscientists are working on determining any physical differences in the brain that may be influencing autism, but so far, no one has ever put Chiari and autism in the same sentence. It's really frustrating because the kids who have had significant-enough Chiari symptoms who have subsequently had surgery have had impressive improvements in their autism issues. Since Drew has no prominent classic ACM symptoms, he might never be considered for surgery, so we may never know whether it would help him or not. Frustrating, to say the least...

As for you... I'm sorry about your MS. It sounds like it's not rapidly progressing, though. That's definitely good news. My hubby's cousin's hubby has an advanced case of it. He uses a motorized wheelchair all the time now.

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

I am lucky with the MS, although I did take the bull by the horns and go on a NON-mainstream medication that is working VERY well for me (fortunately). I was in much worse shape for a few years, before I found this option.

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. We're from Canada, but her and her husband relocated to Chicago a few years ago, and she went to one of the best specialists in the country before she finally got the dx.

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

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. The hardest thing is trying to get info from him about things when I can't tell if he doesn't understand what he's being asked or if he just can't articulate the answer in a way that's understood. It's a real learning experience; no question about that. At least I got to go to the ASA annual conference here in Prov back in July, and it helped tremendously to talk with the adults who were there about their experiences. One even said he was a lot like Drew at Drew's age (he's 44 and married now! ), and it took me several minutes to realize he had autism. He also gave me a much-needed pat on the back for what I'm doing.

Hey, I gotta make breakie for this gang, so must go. More later!


LIZARD