Welcome to Dave’s Big Brain – My Chiari Malformation Journey
Before I get too far, it’s pronounced Key-AR-ee.
I decided to start this blog for two reasons, first is so that friends and family have a place to find answers to questions they have about Chiari, and how it affects me. Second, is so that I can update everyone on the progress I make on the journey from diagnosis to surgery, through recovery and beyond.
I maintain that my brain is too big for my skull; unfortunately the professionals have pretty much determined that people with Chiari Malformation have skulls that are too small. Never being one to allow anything to dent my ego I am sticking to my ‘big brain’ theory.
So what is Chiari Malformation? I will provide you with a non medical definition from my new favorite website www.conquerchiari.org: A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, and disrupting the normal flow of cerebrospinal fluid (CSF); also known as Arnold-Chiari, ACM, ACM I, ACM II, CM, tonsillar ectopia and hindbrain herniation.
It’s ironic that I have something that can be known by the abbreviation ACM and I work for a company named ACM, Inc.
What are the symptoms? There are lots of symptoms, some of which are much worse than anything I have, so I’ll limit this list to the symptoms I have. Some are 24/7, others are occasional, here they are: Severe headaches, neck pain, shoulder pain, tinnitus (ringing in the ears), balance problems, numbness and muscle weakness on my left side, muscle spasms in arms and legs, and mental confusion which is always fun.
What is the treatment? There is only one treatment and that is decompression surgery (posterior fossa decompression).
So there you have the answers to the “Big 3” questions about Chiari Malformation. Next I’ll answer the questions as they relate to me. I can tell you’re excited!
So what is Chiari Malformation? It’s a disorder/condition/disease that I had never heard of and wish I never had to learn about. It’s like living with a spoiled brat inside your head that demands your constant attention, and God help you if you try to ignore it. Here is a typical exchange between Chiari and myself:
Morning:
ME – It’s going to be a good day, woke up without a bad headache and my neck and shoulders feel pretty good. Ears are ringing.
CHIARI - Oh silly man, did you just bend over to pick something up? How about I give you a nice explosive headache, and maybe I’ll throw in some dizziness just because I can.
ME – Damn It!
Mid-day:
ME – Got the headache down to a dull roar, the day is getting better. Ears are ringing.
CHIARI – Ha, ha, ha it’s been a few hours, how about some nice neck pain and I think this time I’ll add the shoulder pain. I’ll even kick the headache up a few notches and add some numbness for my own amusement. Let’s keep the laughs going, time to make you forget the words you were about to say to a client, that one cracks me up every time.
ME – Ugggh! Screw You Chiari!!!!!!!
Evening:
ME – Home from work, get to see my beautiful wife and great kids, just being around them helps the pain and frustration of the day melt away. Ears are ringing
CHIARI – Not so fast buddy, I’m still here waiting to ruin your evening. Did you just sneeze or cough? Or maybe I heard you laugh; prepare to be in pain and I think this time I’ll make you lose your balance for no reason.
ME – This sucks!!!
Bed Time:
ME – I’m totally exhausted. Ears are ringing
CHIARI – I’m not even a little tired! Let’s see how long I can make you toss and turn before you find a comfortable position.
ME – Finally asleep
CHIARI – Knock, knock…wake up… I’m not done with you. I want to play!!! Here have some head and neck pain, oh wait I forgot to give your arms and legs spasms earlier in the night so enjoy them now.
ME – F-YOU!!!
What are the symptoms? I covered the one’s I have, but here is some insight into the worst ones. I’ll start out with the one’s that are easy to explain. My ears ring 24/7, if you’ve ever been to a loud concert it’s that kind of ringing mixed with what sounds like constant wind. The neck pain varies from a sharp stabbing pain to feeling kind of stiff and tends to goes down my spine to right between my shoulders. The shoulder pain goes from a sharp stabbing pain to a sensation that my shoulder muscles are being twisted inward toward my spine. The neck pain and shoulder pain come and go throughout the day, and some days are worse than others. Now for the headaches, they require a more detailed explanation, if you have ever had a migraine imagine having one everyday of your life and the only relief is sleep. The headaches vary from a dull throbbing to “oh my god, make it stop”, I haven’t had a moment without a headache since September 2012. Like I said above, they can become very explosive. The headaches start at the back of my head and will radiate throughout my head on their way to settling behind my eyes. It feels like my brain is moving around in my skull and it feels like there is enough pressure that my head might actually explode. Certain things make the pain worse, like bending over, sneezing, coughing, yawning, lifting heavy objects, moving too quickly , moving my eyes from left to right, and perhaps the cruelest is laughing. No that’s not a typo; laughter gives me some of the worst pain imaginable.
What is the treatment? Since surgery is the only option, that is what I will be doing in February. In my case the neurosurgeon will take out a piece of my skull and the C1 vertebra. He will then do an ultrasound to see if enough pressure has been relieved, if not then he will open the dura which is the protective membrane between the brain and the skull and put in a patch. Sounds like fun doesn’t it? You may be thinking to yourself “can’t they manage the pain”, sure they can but I don’t want to live my life on pain meds and I want my life back. I told the doctor that if all I get is 24 hours without pain after the surgery I will consider it a success, that’s how bad life with this spoiled brat named Chiari is.
I think this is enough for the first post. My next post will be about the events leading up to the decision to have the surgery. Let the journey begin!
Dave,
ReplyDeleteI wish I could offer words of wisdom. I'm sorry this is happening to you. It cruel and unfair that life would yank the rug out from under you like this. But I applaud your courage in putting it out there and educating people. You and your family will be in my prayers for strength and comfort and of course that the surgery will be wildly successful.
God Bless,
Carin Fletcher
Dave,
ReplyDeleteI think having a blog is a great avenue to express and explain what you are feeling to others. I too and sorry that you are having to go through this. No one deserves to have to deal with something like this in their life. I only hope that you find comfort in knowing that your family and loved ones are there for you to cheer you on and to help in any way that they can. You are in my thoughts and prayers for a successful surgery and speedy recovery.
Love,
Liz
WELLLLLL being that we think of you all as family, we all agree that we are going with the "small skull" thing, just for giggles : )!!!!! Now on a serious note, you know we love ya and whatever we can do to help we will be there! I am so glad that you did do this blog, cool to follow!!! Prayers Dave!!! and my dear friend Joyce aaannnddd Jon & Bre!
ReplyDeleteDave,
ReplyDeleteI've trying to add to this blog all day. I've been trying to set up a blog Id in Google. You would never know I'm an IT guy :-)
Anyway, I'm glad to see you are sharing this ordeal with us. Many people keep this stuff to themselves. Better for all if you share your experiences. Could even help someone else who is going thru the same thing. Joyce must be sharing your pain too. You know we'll be there for you for whatever you need. Try to keep a positive attitude. You will get better!
Love,
Poppie
If laughing is the thing that hurts the most, I'm so glad you are coming to my comedy show in a few weeks. No risk of laughter there.
ReplyDeleteContinue to be brave, Dave. We are all there to help.
Thank you all for comments and love. It is greatly appreciated
ReplyDeleteTried to post twice...You area good writer Dave maybe you'll get published. We are all here for you and the family. Anything you need just call. We will keep you in our prayers and you keep your spirits up. Love you, Nonni
ReplyDeletetreid posting hope works this time- great blog- content super -keeps us well informed
ReplyDeletelove Mom and Dad
Welcome to the comment section you did it!
DeleteLove
Dave
David this isative a great blog, well written and very informative; I look forward
ReplyDeleteto reading all the new blog posting and comments when I can find them-love Mom
I feel for you. I have the same thing. :(
ReplyDeleteAnother helpful website is asap.org
ReplyDeleteThanks for the info on asap.org. Did you already have the decompression?
DeleteDave, good luck in February. I have the same thing too. No surgery yet. I walk around everyday liked i have ms with HA 20-25 days per month. My worst HA's r the low pressure ones. we are trying to get into a specialist since my doctors don't seem to be giving us many options besides "try" to pace yourself and rest when needed, oh and don't take any medicine for the HA's. Hello, i have a 6 and 5 yr old. I read all of your posts. I think it is a Sunday thing with Chiari. I will keep you in my prayers.
ReplyDeleteBlessings,
Angie
I know all too well what that life is like. I'll turn 33 in November and I've have had a total of 3 brain surgeries so far. My first was shortly after I was diagnosed and I wasn't even 17 years old and I was in high school still August 1997 that one lasted 14 years. My 2nd and 3rd surgeries were in May and June of 2011.
ReplyDeleteThanks for checking out my blog. I hope you never have to endure another brain surgery.
DeleteI have type 1 and have severe headaches an neck pain everyday was wondering did it ever feel like you were laying on rock's in the back of your head and neck even though your pillow is very soft?
ReplyDeleteI have type 1 and have severe headaches an neck pain everyday was wondering did it ever feel like you were laying on rock's in the back of your head and neck even though your pillow is very soft?
ReplyDeleteHi Angie,
DeleteI don't think I've experienced the feeling of rocks in the back of my head and neck. Are you pre or post surgical? Prior to the surgery it seemed as though it was impossible to find a comfortable position where my head and neck didn't hurt. Now that it's been 9 months since the surgery it gets easier to get comfortable in bed. I don't know if it will help you or not, but I use a "My Pillow" and it is very comfortable.
Admin please help me pass this on.
ReplyDeleteI have lived a very terrified life the past 12 years due to the steady distraction caused by tinnitus. I hear a steady, offensive and unending buzzing sound on my left ear, which made me deaf. I worked in a factory for 28 years and i was really much exposed to loud noise, since i retired 15 years ago i have been faced with this, infact it made me deaf. I was fortunate enough to get a medicine from Dr. Joseph that put a final stop to the sound and it has never returned since then. Most doctors might tell you there is no cure to tinnitus but as a survivor of this i will tell you it is curable. To get the medicine for yourself just reach him personally on josephalberteo@gmail.com also for advise and information too.
I am sophie from Canada, I once suffered from a terrible and Chronic tinnitus ,in 2016, the doctor told me it has no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this noise was really terrible especially when am sleeping, i have this constant ringing in my ears for about 8 months, this was really a terrible noise ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how she was been cured from tinnitus through dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 3 weeks as prescribed and i was totally cured of tinnitus within those week of usage,on thin now i have not hear anything ringing in my ears.if you need his help you can Contact this herbal doctor via his email drwilliams098765@gmail.com for help
ReplyDeleteI have been in the tinnitus community for a while now and I have experience what you are going though with tinnitus , I do know people that have got
ReplyDeletetinnitus from having their implants done. Ringing in the ear after an implant can go away on its own, but that is BS of what the mouth and jaw specialist said. I have definitely seen and heard of a connection between tinnitus and teeth and mouth. There is a treatment for ringing ears and if you are
interested you can contact Dr William herbal remedies that what I take that stop the ringing in my ear that was really driving me crazy, don't Lose hope .,I have found a solution for my fellow citizens . If you haven't I would suggest trying Dr William herbal supplement. Again, this is a thing that takes time and usually requires time and patience for it to work WITH no side effects. But I'm not hear to sell you the product, I'm only hear to tell you that it works, but it is a journey and can be difficult. I hope at this point in want away on it own. Good luck . his email address drwilliams098765@gmail.com for advice and for his product
COMPLETE CURE TO TINNITUS: I had tinnitus in both ears for fifteen years with a high pitched two tone sound, the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm, that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have try sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called William on internet who provided solution to the problem. Do not be discourage, dr williams product is a permanent cure to Tinnitus. Contact him with this email (drwilliams098765@gmail.com)
ReplyDeletehello every one my name is Justin Leo i am from Japan, i have been suffering from tinnitus disease for the last Three years and had constant sound, especially in my right ear. During the first year, I had faith in God that i would be healed someday.The ringing sound started getting worse each and everyday that comes to pass, and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from tinnitus by this Man Dr Williams and she also live the email address of this great man that he would be of help for so many others suffering from this, so i wrote to Dr. Williams telling him about my tinnitus he told me not to worry that everything is going to be fine!! i never believed it,, well after sending me the drugs and i follow all the procedures on how he instructed me to be taking the medicine, few weeks later i started experiencing changes all over me, after all i went to my doctor to confirmed if i have be finally healed behold it was true,right now am one of the happiest man on earth,if you have such sickness or any other at all you can email Dr. William on drwilliams098765@gmail.com
ReplyDeleteWow: who will ever believe that a natural herb can cure tinnitus, i never believe that this will work i have spend a lot when getting drugs from the hospital to keep me healthy,i went to many hospitals for cure but there was no solution, One day I was in the office going through the internet when i see so many people testifying about Dr Williams herbal medicine on how they where been cured from tinnitus and so many other similar body problem, so i mail him.He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks To my greatest surprise after patiently going according to instruction given to me by Dr Williams, all the ringing in my ears stop gradually and up thing this moment i have not experience anything ringing in my ears. I want to say a big thanks to Dr Williams who God have sent to heal his people with his natural medicine i pray that God will bless you for the good work you are doing.for all who are still suffering from this disease, you can also contact Dr Williams through his email address on;drwilliams098765@gmail.com
ReplyDeleteI am Shelley from Los Angeles,California, I want to testify on how i got cured from tinnitus, I have suffered from ringing ears since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the buzzing sound in my right ears, until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including tinnitus, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from tinnitus just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from tinnitus you can contact him through his email on drwilliams098675@gmail.com for help.
ReplyDeleteDR WILLIAMS HERBAL CURE TO TINNITUS
ReplyDeleteAppreciation is the key to doing more that is why I have took some time out to thank some one who cured me of my 4 years tinnitus problem. It became a major problem to me as it was affecting my life and I was no longer comfortable so I decided to look for a solution and I came across a post of Dr williams and how he has been helping people of the same problem with his herbal remedies I contacted him and tell him all I have been facing in my life. He told me how to get his product and how to take it after every thing I find out that all was now okay with me and that my tinnitus problem was gone that is why I have come out today to say thank you to him and for any tinnitus problem either from man or woman. Contact him on drwilliams098675@gmail.com his a man that take good care of his children
I am Shelley from Los Angeles,California, I want to testify on how i got cured from tinnitus, I have suffered from ringing ears since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the buzzing sound in my right ears, until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including tinnitus, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from tinnitus just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from tinnitus you can contact him through his email on drwilliams098675@gmail.com for help.
ReplyDeleteI am sophie from Canada, I once suffered from a terrible and Chronic tinnitus ,in 2016, the doctor told me it has no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this noise was really terrible especially when am sleeping, i have this constant ringing in my ears for about 8 months, this was really a terrible noise ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how she was been cured from tinnitus through dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 3 weeks as prescribed and i was totally cured of tinnitus within those week of usage,on thin now i have not hear anything ringing in my ears.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help
ReplyDeleteCOMPLETE CURE TO TINNITUS: I had tinnitus in both ears for fifteen years with a high pitched two tone sound, the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm, that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have try sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called William on internet who provided solution to the problem. Do not be discourage, dr williams product is a permanent cure to Tinnitus. Contact him with this email (drwilliams098675@gmail.com)
ReplyDeleteThanks to Dr Williams I am so happy today, I have been suffering from tinnitus for the past 2 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become tinnitus free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now tinnitus free within those week of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have tinnitus you can email him on drwilliams098675@gmail.com for more information .
ReplyDelete