new hear--14 yr old with cm

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

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new hear--14 yr old with cm

Postby medgirl47 » Sun Oct 14, 2007 3:01 pm

my 14 year old son has just been diganoised with Cm1 with 2 large syrinx. he will go see a nurosurgeon on the 23 of oct. his Cm is 10 cm. his passion is football been playing since 5th grade. what do i as his mother have to look forward to with him having this disease?? would apprecaiate any responses from other mothers with teenager. the strange thisn is he has no symtoms. we found this on a fluke.
medgirl47
 

Postby assilem548 » Sun Oct 14, 2007 9:48 pm

Hello...
I am probably not who you intended to respond, however this will probably help you a little. I am an 18 year old who was diagnosed at age 6 with a 15mm cm1. I had many symptoms, some of which included frequent head aches, eye sight loss, frequent comiting and a loss of coordination. They did surgery and removed the "tail" of my brain (that went down into my spinal canal). My life revolved around sports, I did karate and played soccer, and basketball. At the time the disease was more thought of as a condition than a disease, and it was very rare. My mom never told me I had less coordination than the other kids, and thus I believed in myself. I never set limitations and although I struggled at times, I made it into the high school divisions, and was even captain of some of my teams. I still have many symptoms, and get sick a lot, but I am now a freshman at a four year university and just try to make the best of it and outdoing what is thought could be done rather than doubting my ability. My advise to you is just treat him as you did before and continue to encourage him.
assilem548
 

son

Postby medgirl47 » Mon Oct 15, 2007 5:24 am

thank you for your advice. that is surly waht i will do. treat him the same no matter what hapens. good luck to you.
medgirl47
 

Postby drummergrl » Mon Oct 15, 2007 8:09 pm

Hi, I'm 17 and was diagnosed as a 16 year old. I've always been an athlete and played tennis, soccer, softball, swam competitively and march on the drumline. I had my chiari decompression surgery with a duraplasty last November and am starting to near the one year mark. Yes, I still have some issues, but overall, I'm practically back to normal. I am allowed to still carry my drum again, and got cleared for almost all sports again. You'd have to talk with his neuro about football.

Since you don't know his course of treatment yet, try not to get too worried. If worse comes to worse and he needs surgery, he'll be just fine. I bounced back so quickly, and since he's athletic, he will too. I completely agree with assilem548.... treat him like normal. The most frustrating thing for me is when my parents treat me like glass. I'm still me, just with a medical thing. I don't want to be constantly monitored or feel like I'm in a fish bowl. It's a scary time right now, but just believe me that you can get through this! If you have any questions, please ask!
CM, SM, Scoliosis
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son

Postby medgirl47 » Mon Oct 15, 2007 9:37 pm

thanks drummergirl. he is a tough boy and i know that he will bounce back from this. we see a surgeon on the 23 of oct. until then we donot know anything. except that God is in control.
medgirl47
 

Postby brianfsmom » Tue Oct 16, 2007 5:20 am

Hi,

Sorry to hear about your son's diagnosis. My son was 9 when diagnosed and he's 12 now. I also have a 14 year old daughter, so I know the age well.

Everyone is giving you good encouragement and good advice. My son also has a syrinx, it was in three sections. One is now nearly nothing, and the other is also very small. the middle part remains the largest but still is much better than before surgery.

My son had almost no symptoms, we found it by chance as well. However, the symptoms he did have - numb hands, rigid muscle tone, and quick reflexes, are gone since the surgery. He has a few residual issues, but nothing serious.

However, I must caution you about the football. Varisty tackle football is one of the very few things they told him not to do. Luckily, he was not a football player, and never will be. Only your doctor can give you advice on your son. But it general, football and wrestling at those older ages are not advisable for a chiari patient, either before or after surgery. I know that isn't what you wanted to hear, but the concusson rate is so high in football, an the neck is so compromised in wrestling. Does he play another sport as well, such as basketball or soccer?

Good luck! Be very careful in choosing a doctor. It can make all the difference!
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Postby medgirl47 » Tue Oct 16, 2007 5:44 am

thanks

we are going to A>I>dupont childrens hosp. and seeing the chief of surgery there on the 23 of oct. i live in del. no he does not play any other sports, but will learn to play base ball as well as he does football. he has 2 syrinx and one is very large to the point that the dr. is baffled has why he has no symtoms. But only God knows that.
medgirl47
 

Postby willsmom » Tue Oct 16, 2007 8:00 am

Hi Medgirl. My 14 yr. old son was diagnosed in early Sept. CM herniation of 7-8mm and very large syrinx going from C1 to at least T4. Not sure how much further down it goes b/c the only MRI we've had thus far was cervical. However, it is also very large front to back at 10 mm.

I had to do a double take when I saw your post b/c my son too LOVES football. Had dreams of the NFL which of course wasn't likely but still his dream.

The first NS we saw said he will never be able to play football again, which you can imagine was devastating for my son. We are scheduled to see a different NS 10/30 who I am sure will say the same thing.

My son hasn't come to grips with this yet but is getting there. In time he will accept it as God has bigger plans for him!!

I cannot wait to meet this new NS as he is a big Christian and very open with his faith.

Good luck to you and your son. Sometimes I think this is tougher on us moms than on our kids!!
Yvette
This too shall pass.
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Postby medgirl47 » Tue Oct 16, 2007 8:14 am

how true, my son seems to be taking it well, he is always tellingme to stop stressing. But, it is true God does have a bigger plan for all this.we only found this because of a headache he was having. I have 3 other grown boys and wondering if they should be checked?? good luck on the 30.
medgirl47
 

football

Postby D4l » Thu Oct 18, 2007 9:10 am

Hello Medgirl!

I am always amazed when I read a post I could have written about my kids! I think all of us start out thinking that we are so alone with this medical problem, that no one could possibly know what we are going through. You are so not alone. There seems, sadly, to be a lot of kids in your son's situation. I have 3 boys an my youngest is a CM1 1/2 with 2 pretty large SMs. He too had no symptoms except for headaches when he got extremely active or loud(like cheering at his brothers football games!) We found his scoliosis at a regular school physical. What a nasty suprise that was...

:!: I agree with Brianfsmom about concussion risks. Before I had to learn about CM &SM I had to educate myself on concussions, my oldest had beetter than a half dozen(that he will admit to). I would never let a CM/SM kid play high school football. I probably would strongly encourage a healthy kid to look at alternative sports. Google the phrase "second impact syndrome" and you'll understand the serious nature of a 2nd concussion before the 1st's symptoms have resolved. Football is a great sport! The problem we discovered is that my son hid his concussions because he is a bullet-proof teenage boy and resented being treated, as the other post says, "like he was made of glass". There is HUGE pressure to play, especially in a small school. We used to be a football family now we are a cross country family. It was NOT and easy switch! I urge you to check out my post: [ Post subject: benching kids from sports] I tend to be kinda wordy so I won't repeat myself.

PLEASE look at the web site for ImPact. It is a concussion management software that is on the frontline in the effort to assess return to play guidelines for concussed athletes. Many of the high schools in our state of Wisconsin are now providing ImPact, and many are requiring all athletes to be baseline tested before the season starts. This is just one company providing this type of program, there are several others. The Packers use ImPact and Brett Farve was tested with it for last year's consussion.

Gosh, I sound like Dr.Doom but your son will need his brain!

Faith will keep you strong, even when it gets tough. I prayed my rosary down to the string! I wonder if little girls are any easier than boys?
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thanks

Postby medgirl47 » Thu Oct 18, 2007 3:27 pm

thank you for the info. yeah my son is one of the tough ones. i have 4 boys, which the one with the cm is the youngest, the others are all grown and gone. i have a granddaughter, and believe me boys are easier. we go and see a surgeon on the 23 of oct. so we are waiting until then he has 2 syrinx in the thoraic area. Only God knows what we happen. i am trying to prepare my self for what ever comes.
medgirl47
 

Bring a notepad for appts

Postby D4l » Thu Oct 18, 2007 5:46 pm

Medgirl,

My Mom used to tell me: this too shall pass.

Before you know it, you'll forget about this message board and realize it has been months or even longer since you checked it. You'll be writting in to tell others about your son's success story!

I hope your appt goes well. Don't forget to bring a notepad with your questions on it. You tend to forget everything as you sit and wait for your appt. Write down all the answers you get too and the correct spellings for all the medical jargon he'll use. Then later you can refer to it.

Hang in!
Patti
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Postby medgirl47 » Thu Oct 18, 2007 6:14 pm

i know that God is in control my sons aunt who worked for a neurosurgeon will ge going with us to make sure that i have eveything straight. i know that he will be just fine when all this is over. no more football, so he will have to fine something else to do. thank you again
medgirl47
 

Postby pattip448 » Sat Oct 20, 2007 7:31 pm

Hi Medgirl, I just wanted to say My son age 16 was diagnosed with CM1 and EDS after a hard tackle playing football last year. He loved Football!! He knows he cannot play anymore but with his coaches and teammates urging he has remained with the "Team " as their equipment manager and he is learning more about the game as he wants to be a coach or manager in the future.They understand when he has absences due to his health and when he is not very with it. He always said everyone can find a place in football and this has proven to be very true in our case. He is thankfull for the friendship and the bonds that were forged when he played. We are blessed that these kids and kind men have chosen to keep Matt included.
They have made dealing with CM1 that much easier.

Good luck with you son I hope everything works out well for him!
Patti , (EDS), Mom of 16 yr old with TC and EDS 6.6mm cerebellar herniation, 15 yr old with EDS Hypermobile
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Postby medgirl47 » Sat Oct 20, 2007 8:32 pm

thanks for the reply. we never thought of those things . but it is something to think about; we go and see the surgeon on tues. did your son have to have surgery and how long was he out/
medgirl47
 

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