Chiari Malformation and Football - How bad can it be?

[BigE36]

My 11 year old son was recently dx with an 8mm CM.  In talking with our Nuerosurgeon she stated "No contact sports now, or ever.  I don't let my boys play football, but they can play soccer".   I'm concerned that this is an overall bias against contact sports in general and has no clinical foundation.  Can anyone provide me a clinical reason as to why contact sports would need to be prohibited?  My son has played tackle football for 3 years now - is the middle linebacker on his team - and loves the game.  I don't know that my son's Neurosurgeon is a Chiari expert (although she states she's done 500 surgeries of this type).  
He will have Decompression surgery at the end of October (has headaches, and Syringomyelia).  I want him to be able to do what he loves (he's a big kid - not the soccer type) but also want him to be safe.  So, I'm asking - what is it about CM that would preclude him from playing contact sports anymore than someone without it?  Aren't there just as many risks playing contactr sports for any other young man without this condition (i.e concussion, broken bones, etc)?  And, while Decompression surgery is on the horizon, why would he be at any more risk than he was before?
Again, I don't feel like I can ask my Dr. this because of the obviuos slant against ANY contact sport and get an honest assessment....any ideas, thoughts or help is greatly appreciated!!!!!
BigE

[pamk5]

I am a mom too so I know how much we want to move the world for our kids and make all their dreams come true. Sometimes we cant.  Somethings are beyond our control.  

There have been incidences of mild trauma causing sudden death in people with Chiari.  Doesnt happen often but it has happened.  Being a mom that is more risk than I would be willing to take.  I asked my CM specialist if this was going to kill me because at times I honestly feel it might.  His answer was I needed to be most concerned about a fall or another MVA.  I am not sure of how this happens but it seems I have read that the brainstem can be crushed in a whiplash type injury.  

I hope this helps.

Pam

[selmaS]

  Hi and welcome to the Chiari forum.

  Thanks you for sharing ur experience on this topic...there r drs out there that feel it is ok for chiarians to return to contact sports....I for one feel if a roller coaster is too much, then full body contact is way too much...I do not get it...

  We r glad to have u join us, but sorry about the reasons that bring u.

  "selma"

[IrishTom]

I played football through highschool. I too am a big guy; now 42 years old, I'm 6'4 and 335. Back in highschool during hitting drills I explained to coaches that I had experienced certain Chiari symptoms, although I didn't know them as Chiari at the time; I was told by those coaches not to worry; I had simply "had my bell wrung". We were taught, when hitting, to "bow" our necks, and then make contact with the Ridell label on our forehead. Unfortunately, in doing so, we first align the cerebellum with the hole that's too big to keep the cerebellar tonsils in place, and then impact the head, driving the brain toward that passage, each hit forcing the herniation deeper. had I known then what I know now I never would have played. As it was, I stopped playing after highschool because the ehadaches and dizziness got worse and worse. Now I am facing DC surgery, which will further weaken the skull and vertebra; the cerebellar tonsils will be "shrunk", which actually means they'll be cauterized or burned away. I played offensive tackle, offensive guard, defensive end. In no position can you avoid 100% of head contact. ANY hit can make chiari worse; if syrinx develops (which can occur in one hit) the damage to the spine is permanent. I loved the gamee, but were it my kid, I would say the risk is entirely too great and the odds too bad. I hope this helps.

[selmaS]

Hi and welcome to the Chiari forum.

We do have a few out there that went back to playing football, but, it is a huge risk...I personally would not do it...and chiari is not an injury, it is a condition that is life altering.

Many times people do have symptoms but attribute them to other issues.....

I understand ur son loves FB, but, once he starts with the symptoms of this condition he may change his mind, or his body may convince him....

We r all different, he may never develop symptoms, but playing FB may guarantee he does!

Do be sure u have him seen by a true chiari specialist...there is not cure or fix for chiari and I understand ur frustrations...we all wish we could be fixed as well.

I hope u find info and support u r looking for.

We r happy to have u join our little family here, but not happy for the reasons u had to seek  us out.

"selma"

[needhelpcm1]

Hello every1 my 9 year old son was recently found out he has CM1 the frustration of this injury is he loves football more than life as a parent It's easy 2 say no football he has no symptoms but he said he would rather play football than being healthy WHY CAN'T WE FIX THIS ISSUE HE IS a very big hitter I'm thinking he'll need so help when Dr says no contact sports is any 1 out there with cm1 playing football with no symptoms

[redsocks]

I also share the same frustration, My son was 9 when dx with Chiari, he had decompression surgery in November of 2008.  He played football for 3 years and was a big contributor to the team, the coach asked all the time if the doctors have changed their mind about letting him play.   My son also has a tethered cord which they did not do surgery on just watching it.  He is symptom free, no headaches, balance is better, runs normal now...he is fine.   He writes about playing football all the time....he just wants to play again and it breaks my heart....this is the only thing he has ever loved.  My question is why can't he play after the surgery?  He has gotten hit in the head playing baseball.  Nobody has ever explained the risk to me.

[selmaS]

...sorry forgot to mention, but TC pulling down on the brainstem causes the Gait, balance issues and can make the person more emotional.....angry, cry for no reason...ect...so know this can and will affect who he is without the surgery.

And TC unreleased causes scoliosis ......and bowel and bladder issues.

[selmaS]

Well with TC thrown in the mix as well, there runs a bigger chance of cranial instability bcuz if/when they release the cord, it could have been the stabilizing factor here....and yes chipping and shaving of the bone play in as well.

Depending on what they do surgery for first, it has been known to happen with some people, but after a TC release teh tonsils can retract and the need for PFD is no longer needed...it is not always the case and some need to have the PFD almost immediatly after as their symptoms get worse.

Once CSF flow is restored.....it could shrink the syrinx...and limitations will depend on what symptoms and or issues remain after surgery....surgery is not a cure, just away to stop the progression of the condition.

Also, it depends on if the condition was left untreated too long or if nerve inpingment was caused...the it is possible to have perm nerve damage.

Gait can be an issue, but may get better after surgery. I also have a gait problem..have had a cane since 2001....but, I feel stronger than b4 surgery, however, my stamina is still not where it should be and I continue to use the cane bcuz after a time of walking I get pains in my lower back...it could be due to the TC which I did not have released as of yet.

Keep in mind that chiari symptoms do tend to cycle...so he may not be experiencing the more typicla chiari HA right now.....

The younger the person is, the better outcome of this surgery is....that is from all the reports I have read...so going in to surgery at 49 was not easy for me...and I am better than b4 I had it....and I see myself as still recovering.

"selma"

[BigE36]

Thanks SelmaS!  Great information....I hand't considered or even been made aware of any possibility of Cranial instability.  I'm assuming that's because of having to shave the C1 vertabrate and not because of having to chip away at the skull - or is it more both?  He also has a Tethered cord and my thought was that this is contributing to his Syringomyelia and that resolving that will help to close those over time and hopefully keep them from coming back (but I don't know that for sure).  This would help to restore CSF back thru the spinal cord and provide cushionioning to the brain - is that true?
Would a fusion help to stabalize the head AFTER decompression surgery? And then what become his limitations then?  Can you tell I'm frustrated for him and wish things we 'normal'?  Sorry, still trying to come to terms here....
We've also noticed his gait is a little off - not terribly apparent but if you look close enough you can see he doesn't lift one leg as high as the other (almost drags it...) - a bit weird....
It's hard now because he hasn't mentioned headaches as much since the dx because now he knows what the result ends up being.... I believe this is the right thing to do, but I get little comfort thinking this has the possibility of not resolving things completely and potentially having to do it all over again.
I have already been WAY impressed with the quick response to my inquiry and am thrilled to see such great input!  Thank you one and all!!

[chadry]

MY DD has Chiari and her doctor told us the same thing. No contact sports. She could do her softball and even soccer if she was OK with the running but no wrestling or contact sports.
Unfortunately what comes along with the CM diagnoses is a lifestyle change.My DD got a black belt in karate when she was younger. She was very good but when I look back at what she did now I want to scream. Thank goodness I did not know then.
There are many other things they should avoid too. Roller coasters are one of them.
Chadry

[n40066]

ditto!  for once, i agree with me irish brother!

[rod44]

Hi,
I as a former rugby player and sports fan in general + a sufferer of CM and Syringomyelia I can understand your concerns. I do not know how you can play contact sports in a manner where you choose how to hit some one, more importantly how are you going to avoid being hit by your opponent other than tell him before hand and this just would not work.

I was due to have physiotherapy on my neck in the hope of helping with vertigo issues but the NS has warned that this could do more damage to my spinal cord, in fact there is a risk of permanent disability and he has advised me in the strongest way possible not to even consider lifting, straining or putting my neck in jeopardy in any way.  
My personal feeling is the risks far out weigh the gains.


ROD

[jasonmcdowell]

My brother had Chiari I and syringomyelia and played football all through high school. He was diagnosed when he was 20 and had the surgery. He would tell stories of hitting someone, as a lineman, and bolts of electricity shooting down his back. While weight lifting, he would wear holes in his back because he couldn't feel certain areas and had no idea it was doing anything. He now, even 15 years after the surgery, has Chiari symptoms and is on pain meds with no real relief. He felt that playing football is what created his syrinx and grew it to the size it was. Because of the damage the syrinx did to his spinal chord, his symptoms are permanent whereas I recently had the surgery, with no syrinx, and my problems should end.
That being said, doctors will always advise on the safe and statistical side. Everybody has different results and their bodies handle differently. I think your son will have the surgery and opt not to. However, if he is aware of the consequences he may be able to play differently such as hitting differently to always protect his neck and never have a problem. Also, if he's a bigger kid, he's probably a lineman and most of the hitting is done with shoulder and back. He should also be aware of what he can handle. My brother was/is extremely stubborn and refused to let pain take football from him. He didn't understand what he had and the consequences. He wouldn't have done it over.
I am not into contact sports so much. I hate football coaches. I ran track and did triathlons. My neurosurgeon said it was fine for me to return to activities. He is one of the best neurosurgeons in the world and advocates frequent activity after. I see him tomorrow and can ask about that and report if he says anything differently.
I also have a 17 year old cousin who was diagnosed but refuses treatment if it restricts him from wakeboarding even though he has had two concussions this summer. Kids...go figure.

[selmaS]

Hi...there is no bias, and I am sure u can find a dr to tell u to let them go ahead and play comtact sports.

But, the point I want to make, is if a fall or a bumpy car ride or MVA can trigger our herniation to grow  and our symptoms to increase.

The cerebellum is too small to hold the brain and the tonsils and they r forced out onto the spinal cord and can restrict CSF flow which is the cause of chiari HA's ...the pressure builds.....the blockage will cause the syrinx to develope (Syringomyelia) In doing the decompression, the NS will chip away at the top vertibrates to make more room and place a patch either made of synthedic, bovine, cadaver or skin from the patient.After chipping some bone to make a larger area to allow the CSF to flow, the neck can be wobbley...cranial instability....some have this prior to surgery, and require a fusion.....

Besides the HA's what other symptoms is ur DS experienceing?

"selma"

If left untreated perm nerve damage can occur.

Ur son deff has more risks than any kid without this condition.