Advice. Brain tumor to back on the bike.

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3/22/2018 7:08 AM

This is a tough decision, and would appreciate some ideas on protective gear.
Over the past several years, I just rode for fun, never raced. Just rode practice & for fun & fitness. Probably C lever rider.
In Aug of 2016 was diagnosed with a massive tumor & rushed in for an emergency craniotomy. A rockstar of a neurosurgeon removed the tumor from my brain stem which ran up into a part of the brain called the fourth ventricle. Post-op, relearning how to walk, balance, followed by radiation, rehab, recovery, I'm now feeling strong enough to get back onto an mx bike. Just to ride, not race.

You'd think i'd be good to go. Caveat, i'm missing a hole in the bottom portion of my skull that protects the area where the brain stem joins the brain. Just soft tissue, muscle, and a thin layer called the dura, protecting the brain stem.
Simply put, if i get a good enough hit to the back portion of my neck, could kill me instantly.

I've been looking at different types of neck protection. I have an Atlas neck brace, but thought about incorporating a karting neck collar (big round foam donut) that goes around the neck. That should soften a direct blow to the back of my neck.

Does anyone have any other suggestions? Or insight that maybe they know of, someone in a similar situation and what they used as extra protection?

Thank you in advance for any helpful insight & advice.

Jon in Jacksonville, FL.

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3/22/2018 7:14 AM

I know nothing about this subject but wish you all the best.

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3/22/2018 7:15 AM
Edited Date/Time: 3/22/2018 7:20 AM

If you are really babying it on the bike then the protection you listed is probably okay and doubt much more could be done. And I mean really babying it to the point you will NEVER be in a situation to take a blow to the back of the head. And of course you can never say never, right?

Sometimes in life it's time to hang up the boots, and that's okay.

Good to hear you are doing well! Pick up a fishing pole and a golf club and enjoy this great weather.

I would definitely consult with your doctor and your family.

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3/22/2018 7:18 AM

Glad you are doing as well as possible. That is a scary story. Admire your courage and understand your desire to get back on the bike and live.

I would take it extremely easy. Your Atlas and a well-padded donut style collar would be a good idea, and of course the best helmet you can afford.

It's probably worth consulting your doctor to see if there are any options to recover the vulnerable area?

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3/22/2018 7:33 AM

Ha! I happen to work with my neurosurgeon on occasion and his professional advice is to do nothing aside from knitting.
Not really, but totally against me riding. As any doctor would advise.

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3/22/2018 7:40 AM

JonnyQuest wrote:

Ha! I happen to work with my neurosurgeon on occasion and his professional advice is to do nothing aside from knitting.
Not ...more

I hate to say it but I would probably take his advice. You were given a second shot, I wouldn't risk it. A lazy trail ride? Sure. But MX? I wouldn't without my doctors blessing. Now, that being said, that's just my opinion. Your priorities might differ. Maybe you love MX so much that it's worth the risk.

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3/22/2018 8:33 AM

Have you looked into something like a Yamaha YXZ1000R? Moto is lots of fun, but being dead (or worse, a vegetable) isn't such a great option.

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3/22/2018 8:56 AM

I am old and slow and have only had 2 hard injury type crashes in 10 years. Tell you doc you acknowledge his advice and concerns but you want some help with protection. Continue with any PT or exercise you are doing to convince him how concerned you are for your overall recovery. Show him your helmet and neck brace or collar or what ever you decide to use.
You need to do what you need to do to live.
I have a friend that is an incomplete C7 quad. He lacks some fine motor skills but I have a vid of him wheeling to his bike, shuffling over to it and climbing on. He has a KTM350 so the E start is a blessing. He added a Rekluse auto clutch and a left hand rear brake. He does race a little and when he goes to the line he leans against the doghouse to start. He tipped over and broke his leg pretty bad racing last week but the docs say he will make a full recovery and can ride again.

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The older I get, the faster I was.

3/22/2018 9:00 AM

Dude!! Just take it EZ!

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3/22/2018 9:14 AM

Look into off road, scrambles, vintage riding. More mellow tracks, Sprint enduros, grass track racing etc

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3/22/2018 9:36 AM

My stepdad came back to ride after two surgeries, radiation and chemo, dealing with a recurrent glioblastoma. Definitely took it easier than in his earlier years. All in all it’s the chance you want to take! If you’ve already beat the tumor, I’d be wanting to get back to my passion as well.

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You’re gonna love this neighborhood, every house here recycles.

3/22/2018 10:03 AM

Everyone says take it easy until it's them having to give up what they live for. Maybe take up trail riding? Where do you live? If there good fun woods or trails near you. Just take it easy and enjoy being out on your bike.

And hey. Maybe start smoking CBD rich weed. I have a friend that was diagnosed with terminal colon cancer. Spread to his blood. Bones ECT. And he's still going strong two years later

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3/22/2018 10:27 AM

Jon, how old are you? Not that it really matters, because nobody here wants to see you die. However if you're 16 it's a whole different set of advice than if you are 65.

Young - You have a whole lifetime ahead of you. Find another good hobby, or like Matt Fisher said above, modify your exposure to danger and get your off-road fix by looking into one of the performance side by sides. That Yamaha he mentioned is killer, and Can-Am and Polaris make great ones too.

Old - Cover up really well, ride well within your means, and accept the fact that you may die doing something you love.


I have a medical question for you: is the hole in your skull not covered by a low-hanging helmet? Or is the risk not because of the missing part of skull; actually more because of any trauma in the general area?
Could you get an operation to add a plate or a bone graft?

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Braaapin' aint easy.

3/22/2018 10:51 AM

Jon, I have a buddy that rides BMX at a professional level and in March of 2010, he crashed pretty hard and we took him to the hospital for a scan. Prior to this, he had been experiencing migraines, bouts of temporary blindness, and being repeatedly told that nothing was wrong. He got an MRI to rule out a concussion revealed a mass taking up the entirety of the left side of his brain. March 2017 Josh was informed he had 2 new tumors on the other side of his brain. Josh finished his 2017 season before getting Gamma Knife treatment on the new growths.

I would recommend reaching out to Josh. He's an amazing person and extremely knowledgeable about this... and I mean extremely! He has now dedicated his time off the bike to studying and running the Josh Perry foundation helping others with brain tumors.

http://www.joshperrybmx.com/
https://www.instagram.com/joshperrybmx/

Hope you can get in touch with a like-minded individual who understands your passion for a dangerous sport after such a traumatic experience and most doctors telling you to never ride again.

Cheers

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Ex Pro BMX rider. Lover of all 2 wheeled machines.

1978 XR75
1994 KX250
1997 KX250
2008 CRF450
2004 YZ250

3/22/2018 12:07 PM

sincere best wishes on your recovery, and please do not take any medical advice from people off the internet.

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3/22/2018 12:41 PM

Cody24 wrote:

My stepdad came back to ride after two surgeries, radiation and chemo, dealing with a recurrent glioblastoma. Definitely took ...more

Thanks Cody, your stepdad is courageous for sure! That's a lot to go through, as you know. Awesome he's on his feet living life.

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3/22/2018 12:45 PM

KBOLTZ wrote:

Jon, I have a buddy that rides BMX at a professional level and in March of 2010, he crashed pretty hard and we took him to the ...more

What a walking testimony. Thank you for passing this along, i'll reach out to him. Thank you SOO much!

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3/22/2018 1:13 PM

Falcon wrote:

Jon, how old are you? Not that it really matters, because nobody here wants to see you die. However if you're 16 it's a whole ...more

I'm 47. Have been riding on & off for the last ten years. Nothing serious. I show up on a Saturday morning, pump out a bunch of laps on a nicely groomed track, then call it a day (before Mike Alessi shows up and tears it up) wink

It's just something i love to do and is my recharge from a stressful week. It truly was my therapy.

The bottom of the helmet (lip) is directly in line to where the skull hole is. I wish there was a procedural option, but it would be extremely expensive and not sure it could cause further complications, such as possible infections.

I work in spine, for a large company. It's been a few months, but on occasion I work in the OR with my neurosurgeon. Kind of a neat testament.

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3/22/2018 1:55 PM

Is the hole a new and different one, or an enlargement of the existing one (foramen magnum)?

Disclaimer: not a doctor

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3/22/2018 2:00 PM

If you have young children, I would say at most, get a trail bike or quad.....or better yet never ride a bike again.
A place that does inserts and orthopaedic work would be able to modify your helmet liner.
A discussion this serious has to be made with the best interest of your family.

I have Menieres, which is nothing like you have, but my ENT doesn’t want me near a bike. Only sports Doctors will tell you different. Dr. that did my shoulder after stepping over the bars didn’t say stay off the bike or stop doing sports, it’s bad for business. j/k

On a good day, I’ll suit up and if my Buddy has to go back for help or I have to spend a hellish period of time in the woods, so be it. My kids are older now, and although one has mental health problems....when it comes to having fun, I say f...it.

So, in my theory, if you have two little kids, buy a boat. Guy I know with a track lost his heart valves to a virus and now has some sort of artificial system in his heart. Headed out to his track and moto’ed against Doctors orders.
I think he had a “moment of clarification”, and has morphed towards boating, which I love myself. We have an incredible river system.
If you are over 60 and things don’t look good, overjump the quad, what the hey.

Good luck to you. Glad you got the rock star Dr. and not “Fumbles”.

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In my 60’s and still loving dirt scoots up here in the frozen north.

2021 Husky 501s

3/22/2018 2:22 PM

erik_94COBRA wrote:

Is the hole a new and different one, or an enlargement of the existing one (foramen magnum)?

Disclaimer: not a doctor

Good question! It's the same, but MUCH larger. Extends up the base of the skull exposing the dura.

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3/22/2018 2:39 PM

Drtbykr wrote:

If you have young children, I would say at most, get a trail bike or quad.....or better yet never ride a bike again.
A place ...more

Thank you for the insight. menieres is serious stuff.

Boats are TOO EXPENSIVE!!!
Now jet skis & wave jumping is something to consider!

Had/have residual symptoms of menieres, scary stuff. Much due to inflammation & severe TMJ--job related.

No kids. But my wife wants me around a while (sometimes).

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3/22/2018 2:47 PM

rongi#401 wrote:

Everyone says take it easy until it's them having to give up what they live for. Maybe take up trail riding? Where do you ...more

HAHA!!

I'm so against big pharma. Enough evidence that THC has so much anti-cancer agents that need to be investigated.

Trail riding is probably more dangerous. Falling off and the back of my head hitting a root or a branch makes me cringe.

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3/22/2018 2:58 PM

My response would be, are you willing to risk dying, for doing something you love? What about the effect on the people in your life?

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3/22/2018 3:15 PM

erik_94COBRA wrote:

Is the hole a new and different one, or an enlargement of the existing one (foramen magnum)?

Disclaimer: not a doctor

JonnyQuest wrote:

Good question! It's the same, but MUCH larger. Extends up the base of the skull exposing the dura.

With a helmet on, it's hard for me to imagine how you would directly impact that area. If it were really ridiculously larger than normal, there could be some possibility, but still seems unlikely.

One other thing I would consider is exactly how large the hole is, and how well supported your brain is. With the jarring of riding on a track and jumping, allowing movement of your brain/cerebellum/cerebral tonsils that it wasn't originally equipped with could maybe cause some issues.

Can you share an image of what exactly was removed?

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3/22/2018 4:19 PM

erik_94COBRA wrote:

Is the hole a new and different one, or an enlargement of the existing one (foramen magnum)?

Disclaimer: not a doctor

JonnyQuest wrote:

Good question! It's the same, but MUCH larger. Extends up the base of the skull exposing the dura.

erik_94COBRA wrote:

With a helmet on, it's hard for me to imagine how you would directly impact that area. If it were really ridiculously larger ...more

This is probably the closest pic i could find of what it would look like.Photo

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3/22/2018 5:32 PM

Take up fishing and enjoy the time you have left. Not to many people get a second chance.

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3/22/2018 6:20 PM

Ride well within your limits. Love every second of it.
Maybe someone could make you a special carbon fiber or plastic guard that only covers that part of your head and fixes to one of those head bandana deals you can wear under your helmet.

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3/22/2018 6:40 PM

“Davi Donut”!

Photo

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3/22/2018 6:50 PM

I’ve never met a neurosurgeon who’s an idiot. You work with the guy who operated on you.

I suggest you heed his advice. He’s a neurosurgeon for a reason.

Find a new hobby. That’s my advice. You are still young and have many years ahead of you. Motorcycles are not worth it. This is coming from someone who has ridden and raced from the time they were 6 years old to lining up for AMA Nationals.

I have 4 young kids and a wife who want me around. I don’t ride anymore. I can’t afford to fuck up. Not just my life but the lives of the people around me.

Get a fishing pole. Get a golf club. Go hiking. Take up mentoring disadvantaged children. Become a child advocate in the legal system (CASA).

You are obviously passionate. Channel that passion into something a little bit less risky. You will find something that you will become passionate about that will take all your time and is less risky.

Me and my Dad are child advocates in the courts of Texas. Thee most powerful experiences I’ve ever had.

The fact you are still here makes me think there are bigger things you can do then ride a dirt bike.

Just something to think about.

Apologies if I’m too blunt.

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