+ 21 chiari malformation and syringomyelia, my motivation
I wanted to share a little of my story and what motivates me to stay so physically active and push my self so hard to achieve my goals.
I have chairi 1 malformation and syringomyelia.
chairi 1 is characterized as a herniation of the cerebellum or cerabellar tonsils out of the base of the skull thus crowding or pinching the spinal chord and or blocking the flow of cereberal spinal fluid. this block than leads to a syrinx, for lack of a better description the syrinx is like a cyst or small tumor in the chord which causes pressure within the chord and causing nerve damage, it can lead to paralysis, and other issues. I had severe chiari. my was akin to having a serious head trauma, the blockage at the base of my skull was almost complete so what little spinal fluid got into my head didnt often come out, so my brain was being squished, similar to what happens to someone who has brain swelling. i suffered permanent nerve damage, hearing problem, vision problems, balance loss. speech problems and some minor paralysis. im grateful for where i am though. in 2008 i had my first of a few surgeries. I was in a wheel chair, had issues with walking and my fine motor skills were so compromised i had trouble writing and feeding myself at times. if i could walk i had to use a cane. i had seriously wasted away with atrophy from not being able to get around. less than 6 weks after my surgery i was rolling on the floor with my than 1 and 2 year old sons. i bounced back quick, but my chiari is life long i still have my syrinx which causes issues with swallowing and breathing, i suffer from serious sleep apnea i have a funny walk from it now which i focus on so its not notcied. I will need more surgery.
a year ago i still had issues with my balance and was having trouble doing squats and dead lifts. i devoted time and energy into bettering my leg strength and balance, to such a great degree this past week i squated 385lbs two times. i have come a long way. every day poses challenges for me. i injure easily because i dont feel pain correctly and i fall easily because i lose my balance out of no where. i have a poor sense of hot and cold and have suffered serious burns because of it. my body hurts when it shouldnt and doesnt hurt when it should. im stiff and ache all the time. but i get up everyday, and do a little more than i did yesterday, so when i hear someone say i cant do it, i dont believe them or i just figure theyre lazy.
what is wrong with me is congenital and recessive, i have two siblings with it and one child. my 10 yr old son will need surgery some day but he has me, so he knows what will come and he is prepared. my life is better, overcoming this and being a former USMC i believe nothing can hold me down or stop me once i decide i can do it. i have truly hit every goal i have ever set for myself in the gym "every goal"
never let failure be an option or youve already failed
here is a post surgical pic of my head
http://i48.tinypic.com/nzyxj.jpg
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I have the same two conditions, chiari and syringo, I have had them for 25 years and I have had several surgeries including your posterior fossa decompression. Most of the symptoms have subsided over the years with the exception of progressive muscle wasting (aka neuropathy). The doctors have always said that any physical straining is bad with chiari (even straining while on the toilet) which eliminates exercise of any kind but I have never been ok with sitting around getting fat so I have always exercised. I do get dizzy when straining really hard but its something I have learned to live with, among the other symptoms.
I am wondering if anabolic steroids will slow the progression of my neuropathy, or help me keep the muscle that I have for longer. I have issued a friend request and I would like to privately get your input on how steroids have helped you, and newbie advise on starting steroid use for a fellow chiari/syringo sufferer... if you dont mind, of course.
absolutely Id love to help ya
AnonI was going to ask you how many flesh screws they put in your head before they operated on you. There was this metal thing they put on my head, so I was told but I never seen it, that held my head in a locked position while the operated on me. I have been shaving the side of my head and I have three divets that will never tan, lol
sorry i havent been around as much lately. i would be more than happy to help anyone out with questions about chiari. its a long hard road for most that suffer from it. more often than not the little doctors know about it, is limited to headaches alone. there is over 100 know symptoms related to chiari. some severe enough to cause paralysis and effect every aspect of your life, some you may not even realize are related.
Hey, I accidentally clicked that blue heart! I hope that is not bad? What does that blue heart mean, anyway?
I just heard about a friend of mine's grandson that has this. He is 7. They are treating him with medicine, currently. But, by the time he gets to be 13-15, they are hoping to assess whether or not he needs surgery. He has terrible migraine headaches. I want to do something about this.
this is a horrible approach to treating chiari. medication does nothing but treat the symptoms, chiari is progressive. it typically gets worse with age. i would absolutely find a neuro surgeon who specializes in chiari. this is what i did. there are only a few in the entire united states. less than 10 who truly specialize in this. theres the chiari institute in new york and dr bejjani of UPMC hes the head of the neuro science and surgical department of the university and specializes in chiari. hes in pittsburgh PA he is one of leading chiari docs in the world right now.
Thanks. I will pass this information on, right now.
Mate would love to chat further if you are still following this post - I also had the chiari surgery so would be interested to hear more about your experiences with training - I sent you a friend request.
AnonI was also a victim of chiari malformation, would be interested in exchanging information. I'm hoping I don't have to have my head cracked open again, that really sucks.
Stalion_WYour story is inspiring and motivating, you are a winner
I have a friend with Chiari Malformation and she is pretty much confined to a wheelchair. She's had tons of surgeries for it and is basically missing the back of her skull, with the same scar you have. I really try to help her when I can. So funny to see this issue on here.
i hear this often. I was one of these sufferers but refused to remain this way. i picked my ass up, dusted myself ff, screamed in pain and conquered my body.
to everyone here, thank you so much for all the kind words. they mean more than i can express. this community truly is a gift to me.
el super beastoGreat story bro +1...GOD BLESS U...
Wow man....you are tough as fucking nails! You don't let anything stop you and can overcome anything. Nothing but MAD respect for you. I can only wish you the best with everything!
What an amazing story! Such a positive attitude comes from integral strength. Keep fighting the good fight bro.
+1
AnonWOW bro, very inspiring.
All I can say is WOW. Truly inspiring. Keep after it. +1
sgtstedankoHoly shit! God bless, you & yours, brother. Good story. I'll think of it Everytime I start feeling sorry for myself. Cheers +3
No kidding! I can't say or complain about a damn thing after reading this story.
thanks makes me feel good about myself and all my hard work when i hear things like this.
You are a badass, true Devil Dawg nature there bud! +1 if I could!
Can someone +1 this guy for me. I'm blown away. That is inspirational and a lesson to be learned by many. Never let anything hold you down and you certainly haven't! I'm impressed. Very impressed. Good for you bro. You are certainly setting a great example for your children.
AnonDid you see his wife? Jeez, she has one hell of a scar.
wow, what can i say i wish people were as lucky as i am to have you in their lives. I am so proud of you and i dont tell you that enough. You have come so far from just a year ago, not only with your health but also with everything else. i just wanted to tell you that i am so proud of you and i hope you know that no matter what i will always be by your side. forever and always
Wow bro that is absolute motivation for everyone on here and everyone should be so grateful if they don't have to deal with something like this. +1 bro and great job pulling through this and on top of this your a marine?! That's insane! I didn't know they could let you join with something like this? You've def came a long way it seems brother, kudos to you
AnonYou should post the zipperhead pic on your profile to help bring awareness to the community
i posted it, do you got yours up?
Very inspitational IMO.... Sometimes we relly on all sort of issues to excuse our lazyness, and here you are brotha pushing ur self to the limit. I saw one time this young kid at this new gym i go to(probably 13-15 y/o) on a wheel chair and very notable disability working out like if it was gonna be the last time he lift. That shit made me feel so small that i feel like congratulating that kid for putting such of example of life. I WOULD +3 IF I COULD, but i can only give one point at the time.
Hey bro, sorry about your disability. A least you still wake up every morning and can still do the things you enjoy, and you have a great outlook and positive sprit keeping you going. You and Destructos both, keep up the good shit!
its not a disability to me. i have only meant maybe one or two people who can keep up with my intensity. i guess in the traditional sense it is but ive never seen it that way
AnonMan... I remember all that shit too well. My balance used to be so good I could walk a tight wire. I still have trouble standing on one foot and putting a dock on the other. The back of your brain is where the balance comes from. At least we still have the cognitive parts of our brain!
cerebellum is the part of the brain that all voluntary and involuntary movements come from, like eye focus, heart beat, breathing, talking, walking, going to the bathroom.balance comes from the inner ear, and the pressure in the head puts pressure on the inner ear causing the balance issues
AnonBrother if I could hug you I would. I am a fellow "Zipperhead" check my pics. This is becoming so common it's ridiculous. So many people went to their grave unnecessarily. Thank goodness for Arnold Chiari!
FR sent and a plus 1, thank you south for sharing this!
Give them a vote if you find it helpful.Permalinkheres the zipper
http://i48.tinypic.com/nzyxj.jpg
AnonOh Yeah... That's a beauty! You got opened up pretty good like I did. I watched some videos on youtube and they didn't get opened up as much as you and I.
What did they give you for pain? Demerol and morphine were a joke but the Dilaudid (Hydromorphone) definitely helped.
i had some work done on my spinal chord when i was under they removed one syrinx, put in a small rod connecting two vertebrae and a spacer and my C1 vertebrae was shaved down. i have cervical instability from it now. oh thats fun lol
i was on demerol, morphine and vicaprofen, i still go to pain management every month, get shots all over my body and heaps of pain meds i never take, but if u refuse them than you get nothing and there are those days you need them
AnonI can't believe the didn't give you any Dilaudid, You must be one tough MF'r. Nothing helped with the pain and they told me, we have one other drug. When they put it in the IV it was
Miraculous. I just remember the "sigh".... And there was relief. My bladder so "high" I couldn't urinate, so back in with the catheter.
ill post my zipper pic tomorrow lol
ive never seen someone who has such a drive to never quit and never stop. your kids think youre a super hero
Keep it up brother. My ex wife and son have a chiari malformation. My ex wife had the surgery to reduce the blockage of fluids, unfortunately that came with a major personality change which ended up leading to divorce. My nine year old son is already starting to get debilitating headaches, but he is obviously too young to have it dealt with. While I'm not familiar with your other ailment, I do know the toll chiari can take on a person, and the fact that you told your issues to go fuck themselves, you will live your life as you see fit, is amazing and an inspiration. Keep killing it brother
AnonI have never heard of it changing anyone's personality, now im going to have google it.
AnonJeez... This is un-fucking-believable. This is getting as common as having your wisdom teeth removed.
he is not to young, look on youtube at the videos of really little kids who have the decompression surgery. the option has already been given to us for my son. it really is all about how bad his symptoms are.
my personality changed too, i became calmer, less irritable, more rationale. i havent had any depression issues since surgery, and i have one or two headaches a month now, not everyday
My ex had section of I believe it was the dura removed, I may be wrong, but basically a section near the base of the the skull near the celebellum, I assume this is the decompression you speak of. They led us to believe this was a type of surgery that wasnt advisable til full adulthood, they recommended atleast 25 yo. When we got the CT scan on my son they would only confirm the malformation and then made it seem like he as well would have to wait to adulthood. Was I severly misinformed? (obviously the videos show I was minformed, but are there benefits to waiting.) Oh and my sons symptoms range from non existent to totally putting him out of action.
AnonMy neurosurgeon told me that not getting the surgery put me at risk of being paralyzed. It probably wouldn't hurt to get a second opinion my friend.
the dura is the membrane around the brain, kind of like a bag that holds your brain and all the fluids inside the skull. during decompression, they remove a small piece of dura and put in a genetically modified pig intestine to replace the piece removed. but in all decompression the remove sections of the skull at the base of the skull near the foramen magnum to give the brain more room and allow the spinal fluid room to circulate. these pieces are than replaced with modified sections of titanium. i had a few other things done but that was my basic first surgery along with a small piece of calcified cerebellum being removed