Morningbroken, how long did you know that you had CM before you had surgery. My son does not seem to have symptoms daily but he gets upset when I try to get him to talk about it. He is more than willing to make jokes for instance he will say I have a saggy brain. I do not like this but if it is his way of dealing with the issue I would rather him make jokes than be depressed. His derma said he would not have to have surgery but if he does not have surgery I wonder if it will just continue to progress and get worse. I will worry about every move he makes.

My son is also involved in many different sports. He loves football and lifting weights. He has currently had to stop all physical activity until we see a NS. Just for advice, do you think he will be able to continue playing football or lifting weights, if he does not have surgery and after surgery if he has to eventually have surgery. I read that riding a bike, or just falling, blow to the head could make symptoms worse. Sports is all he has every known. He plays football in the fall, basketball in the winter, and baseball in the spring and summer. Like I said playing sports is all he has every known and has been playing these sports since he was 5. He hates that he has had to stop everything and I caught him riding a scooter today and seem him try to jump a curb and fell. I was very upset with him and he got very upset with me because of the way I reacted.

Thanks for your comments, I am willing to listen to any advice you are willing to give because I do not know anything about it.

Oh, hon, do I feel for ya **huggs**.

Actually, I was officially diagnosed with ACM around the middle of March of 2000, and had surgery in June of 2000, so less than a month after DX. But my symptom progression was so rapid and degenerative that it was cause for concern. I went from being perfectly healthy in Jan 2000 to unable to walk the week before surgery.

Far as the making jokes aspect. It can really be conducive to a healthy outlook, and a positive way of dealing with an entirely too frightning unknown, at least in my opinion. Seems to me, like any concerned parent, your scared enough for both of ya . My DH has kinda the same sick, warped humor of dealing with our situation. Like he told me, sometimes you have to laugh to keep from crying. I would hazard to guess that your son's joking is a way for him to deal with his fear of loosing everything that makes him the peron he's learned to be.

I would definately discuss your concerns with the NS at your appointment. Especially the limitations with and without surgery. I, too, would be concerned about the football (although to be upfront and honest, I'm not that big of a football advocate in the first place). However, I would also be concerned about limiting him from ALL sports, due to the depression factor, if it were my son, I'd probably encourage him (with doctors approval and support) to continue and concentrate on the less contact orientated sports. Far as the weight-lifting, as long as it doesnt aggrivate any symptoms, I dont think it would cause any problems. Especially if it is just to maintain health and muscle tone. I would advise against body building though, anything that causes stress and tension in the upper shoulders/neck area, ie less weight with more reps, as apposed to higher weights with less reps. Of course, as previously stated, do this all WITH approval of the NS and possible a NL if surgery isnt a recommendation.

I know it will be hard for you, but after practical saftey measures have been taken, (helmets, guards, etc), and you have consulted with a NS or NL and have recieved the go ahead.... try not to become so concerned that you wind up psyching him into becomming a recluse himself. After my surgery and post op, I was allowed to live a normal life, with a few exceptions, the list I had to avoid were things like..... no riding roller coasters, no horseback riding, no bungie jumping, no skydiving , basically anything that would cause sudden extreme head jerks.

As far as aggrevating the condition, so many "normal things" can have the possibility of inflaming an otherwise non-symptomatic Chiarian, its really a mute point in trying to cease all potentially aggrevating scenarios. My Chiari symptoms were actually accellerated by a simple case of tendonitis in my shoulders and neck area. As my NL told me, a person cant live life afraid of the "possibilities" of developing something that maybe, possibly, could aggrivate something. As a parent, this is soooooo hard. I even find myself worried about my kiddos when their out climbing on the swing set, that they might fall and aggrevate a hereunknown Chiari Malformation. But I also understand, at the same time, that it would be unfair of me to deny them being kids, just because of what might be, what could be, and what possibly might happen. So I resign myself to keeping the sand under the swing set nice and fluffy, scanning the ground for rocks and sticks, making sure they wear their helmets and pads each and every time they get on their bikes, etc.

Glad to hear from you sweetie, and hope you and yours have a very Merry Christmas, and a Happy Happy New Year!!!!

God Bless you and yours!!!!

Dawn

Morningbroken, thanks so much for your advice. We go a week from tomorrow and I am trying not to be over protective. You are right it is very hard. My also loves and I stress the word loves to dance. I have even question whether or not he should be doing that.... I could see him growing up and making a living at doing so. He has moves that sometimes I wonder how he makes his body move like that. I really enjoy watching him and he enjoys entertaining people and making them laugh. However, today he was watching a football game and asked why didn't pro players wear mouth pieces and his father said they get paid for what they do and it is their choice. Next, my son said "when I play pro ball, I am going to wear a mouth piece because I am not going to take the chance of biting my tongue off." This comment was hard for me to take because football is such a rough sport that I figure from here on out it will be off limits. These comments are tear jerkers.

It is nice to hear that you are able to live a normal life after surgery. I am afraid they will not do surgery and he will get worse and I am also afraid of him having surgery. I do not think his symptoms are bad enough to have surgery right now. I ask myself if he will ever have to have surgery because part of me would rather him have surgery than to have to worry about the symptoms progressing. I feel horrible for saying so. Actually, I think I have more symptoms than he does and I haven't been diagnosed with it, but my symptoms have been around for 4 years so I do not think I have CM.

Thanks so much, you do not realize how much it helps the process of accepting that my son has CM. I was so unsure about CM and talking to you has help me understand so much. I will keep you informed and most likely will be asking more questions.

God Bless You and hope you have Merry Christmas,
Tina

Oh, honey!!! Thank you for those kind words **huggs** It truely is a good, good medicine to hear that in some little way you can be of help to someone. Our few little messages have done a world of good for me as well. I feel that the worst thing someone with Chiari, or someone supporting a Chiarian can face is Social Isolation. Until comming here, I felt alone in the Chiarian Universe. I have a wonderful support system, dont get me wrong, and without them I would have never gotten this far. But to speak with people who KNOW some of the issues your dealing with, from personal experiance, that is something that careing friends and family just are unable to provide. They mean well, and they have a very important posistion in yours and your sons mental well being, but unless you've been there, its just impossible to relate.

I wish you the best of luck with your appointment. Dont fret over wishing both ways, its perfectly normal to be torn about a situation like this. You of course want what's best for your son. But at this point in time, there are just so many unanswered questions.... questions that only your son, your NS, and yourself... working together as a team.... can solve and answer together. When ya need support, I'll be here. You go ahead and ask yer questions when ya have em. If I havent dealt with it, we'll search the web together and figgure it out eventually .

Keep me posted!!!!!

God Bless Ya!!!!!

Dawn