My son and playing hockey with a syrinx

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Re: My son and playing hockey with a syrinx

Postby caughtknee » Thu Mar 26, 2009 11:09 am

Hello all,

I may have several eggs thrown at me after I share my opinions (and again, they're just mine...so it's all good). Also please note that this is in regards to those that only have SM. Not CM.

I've been told that Chiropractic is a no no. And I agree. Do you think's good practice to get your back and neck cracked? Yikes. We really don't want to do anything that will piss our bodies off.

Now here's the deal, I have a syrinx. I'm 34. I found out about it when I was 32. Mine is located between my C5 - 7.

I have experienced the pain of my syrinx ever since I can remember. Because I never knew what a syrinx even was, I didn't even know anything was really wrong with me. I'm not a complainer for one, so I just thought that having shoulder, arm, hand and finger pain was something everyone went through. When I did complain, I heard people say "Maybe you slept funny".

At any rate, because I didn't know about it, I continued to live a great and happy life through my teens, twenties, and even now my 30's.

I did gymnastics, cheerleading, skiing, running, tennis, you name it...

In short, I didn't let my arm pain bother me.

So, since I've been diagnosed and now know what I have, I just pay closer attention to what sets me off.

I know that if I go skiing, I will suffer with arm pain.

I know that if I go for a run, I will suffer with arm pain.

But, it pisses me off (excuse my language) when my mother won't let me dive into a pool. I'm not a disabled person. My dad is disabled with MS. Perhaps she fears that I will automatically turn into a vegetable if my neck hits the water wrong, but seriously now...I've been diving into pools since I was six. I think I've got it covered.

So, I guess what I'm trying to say is if hockey makes your son happy, then let him do it. Is it a risk, certainly. But, if he finds that he can make it through a game getting checked a couple of times and he feels how he would previously feel after a game, then he's in good shape. If he finds that his body is not bouncing back properly or experiences a lot more pain than usual, then it's time he consider another sport.

I know everyone worries about their children, but worrying about things that might not even happen is a waste of energy.
Again, I'll never forget my mother reading on one of the syrinx webpages something like, "20% of patients with a syrinx will die before the age of 48" and becoming a nervous wreck over it. My response to her was, "Yeah, that means you and I both run a much higher risk of dying from the flu." Haha. It's true though!

Also, all the webpages out there talk about how rare SM is. I don't really believe that it is. Is everyone all over the country expected to get mandatory MRI's like Mammograms for women above 40? No. I'm willing to bet there are many kids all over the place who have arm pain that aren't complainers and could possibly never know that they have SM.

It's all about attitude. As an adult, I know what my body is capable of and what it's not capable of. If I care for myself appropriately and avoid the things I know hurt my body, I know I'll live a nice healthy and long life.

If you, your wife, or son are having trouble digesting the news of him getting a syrinx, I strongly suggest you read the book "You Can't Afford the Luxury of a Negative Thought", by Peter McWilliams. It will help you put things into better perspective.

Warm wishes and good luck,

Courtney
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Re: My son and playing hockey with a syrinx

Postby adcolbar » Thu Mar 26, 2009 11:40 am

Courney,
I appreciate you attitude and mind set. Thoughout my life, I have worked cattle, broken horses, cheerleading, gymnastics, etc. etc. etc. And I can tell you because of my attitude, I always would bounce back... always. I have had broken ribs and acted like nothing was wrong, or a broken hand and continued to play basketball, or broken an arm from breaking a horse, whatever came my way, I simply worked through the pain. This is the first time in my whole life that I have be down. I was a flight attendant and worked over 100 trips a month before I fell. I was in Paris for two weeks, only four months before my fall. Other flight attendants called me Super Stew because of how I loved to do my job. Life was wonderful and then with the fall comes eye injury, brain injury and about six months after my fall, wham! My attitude was initially to deny anything because of how I have lived my life, just like you explain. I told other flight attendants I would only be out a couple of weeks and then be back. That was in 2007. I can't tell you how the loss of the life I have lived has grieved me, and I am one tough cookie. My sons have never witnessed me being anything but strong and tough, so this is horrible for them as well. You are doing well and your Syrinx is probably not growing and you know what you can and can't do. I think there are stages to this thing, I don't know. But I say enjoy your life as it is right now and take care of your body. It just seems to me that Brady is having too many surgeries and all I was offering is maybe an alternative where he would no suffer and still be happy and successful. But you go girl, in staying where you are in life right now. Normally, I would be right on board with you. But the fact of the matter is it is detrimental to my body to do the things I used to do. But I am still hopeful and because my attitude reaches out for a cure, then I know there will be one, I just don't know when.
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Re: My son and playing hockey with a syrinx

Postby jimhorn » Sat Feb 20, 2010 1:18 pm

Hi All
My son had hip arthoroscopy sugery at the Mayo Clinic ( amazing place ) in Minn last April and entered college at the U of Wisc and finished his 1st year of college hockey. His 1st playoff game was last night, they won.
All American - All Conference honors were announced and as a freshman he made it, the Syrinx has had no symptoms since it was diagnosed when he was 16, he is 21 now. He seems to be adjusting to college life both on and off the ice. We sure miss seeing him.
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Re: My son and playing hockey with a syrinx

Postby Janice » Sat Feb 20, 2010 3:44 pm

Thanks for the update. I often wonder how he's doing, especially when there's mention of restrictions and limitations regarding physically challenging sports. It's great that your son has been able to keep playing for so long, with no negative effects from the syrinx. He is one of few who actually manage at such a competitive, rough sport level. Having a syrinx can be very crippling and debilitating, as I can definitely say firsthand, so I think it's quite amazing that it's had no negative impact in his life at all, surgery or not.

Again, thanks for the update, and for continually keeping us posted on his progress. CONGRATS, on his honorary status, and his success in hockey, college and life. I can imagine he is missed, been there done that, lol!

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: My son and playing hockey with a syrinx

Postby jimhorn » Sat May 14, 2011 11:07 am

Interesting discovery with my older son ( 28 ) who does not play hockey, he was experiencing numbness in one arm and sometimes botyh so while a battery of tests were completed incl an MRI and Syrinx was discovered. Exactly the same location and size at the 7th cervical / 1st thorasic region of the spine as my younger ( 22 ) hockey playing son. It was always speculated that my hockey playing son`s Syrinx originated from a blunt trauma hockey incident with the boards. So seems like it is genetics, wonder if I have one? The Nuerologists and Neurosurgeons testing of the older son showed that he has carpal tunnel and NOT experiencing Syrinx related arm pain. He did complete a brain scan last night as well. My wife and I had many sleepless hours after the Syrinx discovery thinking my older son having the Syrinx is actually causing symptoms as we have read in this forum. It was scary since my hockey playing son has had zero problems from playing in a brutal collision sport.

The hockey playing son has just completed his soph year in college and another successful season of hockey. He comes home tonight, we have not seen him in a long time except for TV coverage of his games. He was pretty freaked out when he heard his big brother had a Syrinx. He still has a passion for playing pro hockey after his college is completed and has a few California friends from youth hockey that have showed up at the " big show " on a NHL team this season such as Bobby Ryan for the Ducks and John Blum for the Nashville Predators.

My son has packed on alot of muscle to protect himself as much as he can and is still growing in height. So far no signs of any issues from the Syrinx, we are so thankful.
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Re: My son and playing hockey with a syrinx

Postby Beverley » Wed May 18, 2011 3:38 pm

WOW Such as unbelieveable story. Thanks for the updates. It does go to show us once again that even if you have a syrinx in the same place the symptoms and problems can still be so different. It also reminds us once again that genetics plays a part in all this also.

I do hope that your older Son has a good out come also. Hopefully it is only Carpal Tunnel and he does well with that.

Thanks for keeping us posted. It is nice to hear some good news for a change. We hope your guys continue in the good news path. It is always incouraging to hear good things. Contrats to the Hockey Player. Hope he has much continued success.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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