Well crap,saw my Neurosurgeon Dr Gary Steinburg at Stanford today and it looks like im going to be a Zipperhead soon.I asked for a few weeks to quit smoking and he said good idea!I feel more confident everytime I see him and his staff.I know without a doubt I am in the best hands and he truly wants to relive my suffering.I actually got him and his nurse to laugh today.I asked him straight faced if when he stapled me up if he could snipp off some extra skin and give me a lil neck lift!!!!! Well heck it was worth a shot right.Gotta keep laughin cause it beats the heck outta cryin.Cryin makes the Chiari god angry and makes the head pressure worse!!!!Today was a mild pain day!!!!!!!!!!!!!I beat that sucker today!!!!!Maybe if i laugh enough it will just go away and I wont be a Zipperhead.No such luck dangit because everything happens for a reason right?I just need to find that reason,have a feeling its gonna be a whopper!!!!!
Awe Abby thank you thats so kind of you.But I cant think of anything I need right now.This may sound crazy but im actually kinda glad I have this weirdass thing in my head.I have made some of the best friends and had more help and support from people that have this tonsil in our brain thing.I become more humbled everyday.I wont miss the pressure in my head though that part sucks!!!!!!If someone would have told me 2 yrs ago that id have this Chiari thing I would have said huh?Whats a Chiari malformation,sounds like a place where monks hang out hahahahahah Dont get me wrong I have cried and gotten angry and said why me.Prayed for it to just go away tried everything.I have read so many stories about people that have suffered for YEARS and Doctors who dismissed it as nothing.I havent had to go thru that.I live in a small farming town and thanks to 1 old country Doctor it was found and he sent me straight to Stanford.Im soooo lucky.I dont know what I would have done if I had to battle this kind of pain for years.So I owe it to the ones that have suffered so long to stay positive.My Doctor at Stanford is awesome and I will surly post all pre and post op stuff to help others.Thank you again for your kindness!!! xoxo Dingaling
Abby said:
Dingaling,
You sure have a wonderful out look on this. Ya, smoking can cause some complications, so that is a great idea to stop. As much as the surgery costs, you'd think he would throw in a neck lift for free. Dingaling, so thankful your here with us. We learn from you as much as you learn from us. You have a lot of friends here who are cheering you on. Do you need anything? Keep us posted and let us know how your doing.
Thank you Gerry thats so kind of you.This is so amazing that people that dont even know you take time out of their own lives to show kindness.Thank you xoxo Dingaling
GerryKBeloit said:
I wish you the best of luck. With your out look on this you are going to do great :)
What a great outlook you have!!! I adore your humor...you will do just fine with your recovery ...given you have such an upbeat attitude!!!
When is the surgery??? Keep us in the loop!!
Do you mind me asking what your symptoms are and what made the NS decide it was time for surgery? I was just diagnosed with CM type 1 and I am on the fence on whether or not to have the surgery and it is so hard to get opinions from others who have no idea what I’m dealing with on a daily basis.
Thanks!
Hi Jenn,do I mind you asking me questions,NO!!!! I want you to ask me anything and everything.Somehow its comforting to be able to help someone else that has this strange thing in their head.People that dont have it will never understand.Its not like cancer or something people have heard about.Im so tired of people saying "well she doesnt look sick"I want to say would it be better if my hair fell out and I looked like a skeleton?I have spent every waking minute researching this thing.The good bad and ugly.My symptoms started about 6 months after having back surgery.I had a dural tear during surgery and woke up in recovery and it felt like my head was going to burst.No medication helped.I wanted to die.Its a pain thats undiscribible.3 days later after laying flat it was gone.I was up walking the halls.I was already 100% better.My recovery was good but I kept getting pressure in my head and back.I just assumed it would go away.WRONG!!! 8 months later I went to stand up and almost fell.My head felt like it did in the hospital.My vision was blurry,my ears were ringing,balance was weird.I knew at that point something was terribly wrong.I got to the emergency room and they reffered me to an Ortho.Got right in to see him.He said it sounded like my neck.Took xrays and I do have some issues.He said i need a fusion.So I said ok book me.Went for pre-op to this little old country Doctor and he said we need to get your head an MRI just to be safe.Had the MRI He called me and said to come right in.He said I have good news and bad news.The good news is you dont need neck surgery,you need brain surgery......................what???? Brain surgery what the ---- is a Chiari Malformation.......I HAVE TONSILS WHERE?????I dont remember much after he said we are sending you to Stanford.That is were the very sick people go.My phone was rining when I walked in the door.They wanted me to come ASAP.It all happened so fast I didnt have time to freak out.When I read about people that have suffered for years with this my heart breaks.Those are the true Chiari Warriors.The pain in my head,neck and shoulders sucks the life outta me.I cant imagine years...........it truly is suffering.The first thing that needed to be done was fixing the tear in my back.I had 2 blood patches last one finally did the trick.I had myself convinced that would cure it.hahahahahahahaha WRONG That dam thing just aint goin away.My symptoms came on fast and furious.I had to move home to my Moms.My 80 yr old Mom was havint to help me bathe.This was the thing that pissed me off the worst.Im supposed to be taking care of HER!!!!!ugggg oops gotta calm down or it angers the Chiari gods and make my head hurt worse.So I saw my Neuro Monday and he said its time for surgery.Ya I know............so lets get er done.I quit smoking yesterday and would like to have a month smoke free before surgery.So my best guess is it will be next month.The most important part is like everyone says find a good doctor.Build trust it has to be that way.If your going to be making a hole in my skull you better know your stuff!!!!Its all happened so fast like less than 4 months.My symptoms are.....Pressure in tha back of my skull constantly.Its made worse upon standing,sneezing coughing,turning head side to side to quick,flickin head back in shower to wash hair.straining to go #2 uggg rapid eye movement,climbing stairs,stress and a few more i cant remember.Oh ya thats another one you get CRS!!! cant remember shit!!!! lol Constant ringing and pressure in ears.<that drives me insane!!!! Vision gets blurry and when the pressure is bad sometimes i cant see anything but shadows.Balance like walkin drunk.feels like your going to tip over.Last 2 weeks ive had to drop attacks.Boom hit the floor.One minute i was petting my kittie and the next my Mom was sayin my name.Sweating profusly and always sooo cold.Hands just lock up for know reason.achy arms.And my sleep is soooo messed up.I sleep for maybe 1-2hrs and wake up if i sleep on my back i choke sometimes.hummm ok ill throw this in to be funny but its true......farting.........yes thats right.......passing gas......be very carefull it can anger the chiari god!!!!!!!Im sure im forgeting stuff and when I remember ill come back and post.......if i can remember that is hahahahahahaha hope this helps Jenn and if you have any more question please please ask even if you think its stupid please ask.It helps me to help you!!!!!xoxoxoxo...
Thamusnks!
Well Lori Laughter is the best medicne right?I quit smoking yesterdayyyyyyyyyy and I would like at least a month smoke free before surgery.So my best guess is sometime next month. eeekkk im acting tough but scared s--tless!!!!!! xoxoxoxo
lori said:
What a great outlook you have!!! I adore your humor...you will do just fine with your recovery ...given you have such an upbeat attitude!!!
When is the surgery??? Keep us in the loop!!
Good for you on quitting smoking. It really makes an impact on healing! Best wishes with your upcoming surgery, mine really turned my life around for the better. It's nice to be able to joke about the condition. Crying just makes it worse! lol
Thank you Anglyn for your kindness.Another success story YAY!!! There is HOPE!! When I first started researching this thing in my head I was scared.Panic why me why?Havent I been thru enough.I read hundreds of stories,most of them good,But all I could focus on was the bad.I could recite every bad storie and couldnt remember one good one.And then I saw the after surgery pictures.How does anyone live thru THAT?How could you describe to people what you have and what needs to be done?My brain?My skull?Tonsills?No I havent lost my mind but its dam sure tryin to push its way outta my skull!!!!!!Sitting on the pity pot was not helping.Staying withdrawn and hiding from people wasnt workin either.So what am I gonna do.Find people like me........yup...im not alone.What a releaf.Then anger OMG so many people that cant find help and have been suffering for YEARS!!!Guilt.......I havent had to suffer for very long.......prayers...thank you god!!!! This group has changed my life.Just seeing words.faces,people.Now when im feeling scared or having a epic painful day I come here and read and write until I feel better.I got this dang thing for a reason and I need to find out what that reason is.And being called a Zipperhead kinda sounds badass whos gonna want to mess with a Chiari Warrior!!!!!!!! xoxo
Anglyn said:
Good for you on quitting smoking. It really makes an impact on healing! Best wishes with your upcoming surgery, mine really turned my life around for the better. It's nice to be able to joke about the condition. Crying just makes it worse! lol
When you go to a new doctor and they ask about your medical history and what surgeries you've had they get so thrown off I've got to admit it's a little funny. lol
Im sure some people might find it strange that I make fun and laugh about it.Thats just me and my way of coping.The last thing I need to to get depressed to.Isnt the pain depressing enough?Its a very serious condition with horrible symptoms.I will never ubderstand how or why a Doctor can say oh its no big deal or its not big enough to cause your symptoms.I dont know what I would do if that had happened.When I was diagnosed I was living in a small farming town.No major hospitals or specialists.It tookjust 1 little old country doctor who cares to get the ball rollin.God bless Dr Adrian and El Portal Imaging.And guess what size doesnt matter after all its the width hahahahahahaha
im on a roll today whew.......
Anglyn said:
When you go to a new doctor and they ask about your medical history and what surgeries you've had they get so thrown off I've got to admit it's a little funny. lol
Thank you for sharing, it really does help! And thank you for your honesty, it’s refreshing! Keep us updated on your surgery. Many prayers for you.