Posts
41
Joined
5/4/2011
Location
Jacksonville, FL
US
Edited Date/Time
3/24/2018 3:16pm
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.
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.
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.
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?
Not really, but totally against me riding. As any doctor would advise.
The Shop
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.
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
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?
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
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.
Disclaimer: not a doctor
Pit Row
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”.
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).
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.
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?
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.
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.
Post a reply to: Advice. Brain tumor to back on the bike.