MY CHIARI MALFORMATION JOURNEY 2

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SORRY I SHOULD HAVE PROOF READ i left caps on ..

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SURGERY IS RANK BUT MAKES A HUMAN OF YOU. I MAY HAVE LOST MY FRIENDS/SOCIAL LIFE BECAUSE I CANT DO SPORTS OR THE THINGS I DID PRE-SURGERY BUT THERE'S NOTHING LIKE WAKING UP WITHOUT A HEADACHE AND HUGGING YOUR FAMILY I FEEL FOR ALL OF YOU YOUNG AND OLD JUST DONT GIVE UP AND BE CAREFUL OF DEPRESSION/ADDICTION YOU WILL BE UNHAPPY FOR A BIT BUT LIKE I SAID WAKE UP PAIN FREE AND JUST FEEL YOUR BODY SO AMAZING IF YOU ARE ON THIS JOURNEY JUST KNOW WE ARE IN YOUR CORNER STAY GOLDEN !!!!

[raulandmichele]

ThePoppy1806- to respond to your question. It would be a lie if I said no it didn't hurt. After waking up is the worst until the spinal fluid levels are back. the pain isn't as bad but still hurts. Just make sure your son doesn't wait too long for pain medicine. I was known for waiting way to long to ask the nurse for something. But I didn't want to become addicted to the meds. And it is uncomfortable to sleep you wake up very stiff and in pain. But remind him that isn't forever it will pass.

[janaemarie10]

Decompressed 9/14/10.

18 yea old. The hardest and roughest thing ever to go through. Lightsand sound bothered me after I woke up from surgeryand lasted for the longest time. Maybe get a "neck" pillow. That's what helped me. Can't lay on the back of head for awhile andthose pillows have a cut out in the middle. Worked very well! Best luck to ur son and family.

[ThePoppy1806]

My son has to have sugary too. He is so scared. But he really wants to know did the sugary hurt?

[FlyinHyy]

I ached for you as "we" were driving to the hospital.

hugs hope surgery three is the final one

[hollimagolli123]

my son is 5 and has had 12 surgerys realted to chiari/syringomyelia.Mikeys chiari journey,mikeys chiari journey2010, mikeys chiari journey video clips

[eurielle2425]

Hi Michelle! Thank you for sharing your story. I just wanted to know how are you now?

[TheKnejae]

I noticed a skydiving video associated with the raulandmichele thing. I was wondering if that was you skydiving if you developed your symptoms after that dive? I have ACM 1 as well and was wondering if you felt that skydiving had something to do with symptom onset?

[Hilaryisweird]

It really sucks after the surgery because not only are you in pain, you can' move your freakin neck. I know when I was recovering. it was really hard for me to communicate with my family because I couldn't turn my head or anything. I'm so happy to hear/see that you are doing well.

[FelishaXCatastrophe]

I have the same diesease as you but im 14. You got released on my birthday which i thought was ironic. I hope your ok now :)

[TheViperkid22]

hello everybody its daryn brehio i had my surgery on may 20,2009 doctors say it was successfull but it wasn't i am suffering horribly and i am addicted and depent on steroids now its been nine months and i am still deathly. i am on here trying to make new friends with survivors and recent diagnosed chiari patients. please call me at: 1-207-549-5199 love to hear from many people

[jackhamma401]

My daughter is 13 and was diagnosed with chiari today. We have an appointment with a neurosurgeon at Children's Hosp in Phila on 3 Dec. Thank you for posting that it is one of the best places. Makes me feel a teeny bit better.

[redneckdlite]

I have syringomyelia still existing after having two surgeries on a Chiari Malformation. My surgeries were 8/06 and 9/06.

I have had some "unknown difficulties" or that is what my surgeons have told me. I had severe skull base Osteomyelitis develop after the second surgery that was not found until 4/09.

I had a skin revision on the site this month (1 week ago) due to too much scar tissue. Go figure!!

So, after all of this, I still have the "syrinx" on my spinal cord.

[twohassles43]

Does anyone have syringomyelia without Chairi? I was diagnosed with SM about 1 year ago, and so far i have got nowhere with doctors in our area. I am now trying to get into a Chairi institute in Wi in hopes of getting some real answers. I dont know if i have Chiari or not, but the doctors i have seen so far tell me i have a syrinx, along with many other upper spine issus. (herninated discs). Any info would be appreciated.

[TLynneA]

My sister had Sringomyelia without Chiari. And my son had Chiari without Syringomyelia. My sister was unable to have the surgery to have it repaired and my son did have the Chiari Decompression surgery. He leaked cerebral fluid twice and had to have two more brain surgeries. It IS competely possible to have SM without Chiari. Best of luck to you and I will say a prayer for you!

[marine1213able]

hey everyone the names daryn brehio, i just got diagnosed with arnold chiari malformation 1 and i go in for surgery on may 20th 2009 if anyone can tell me about the procedure and the recovery please contact me asap thanks

[EllenBabes09]

God bless youu and everyone who has has and is waiting 2 hsve this operation. I had mine four weeks ago and am still recovering. I also have a Scorliosis < Curved spine and Syrix < to much fluid on the spinal cord. I have to have operations 2 fix these to soon. If anyone else has these problems could they please post a comment on my page!? I would love to be able to speak to someone! :) x I hope that everyone pulls though And knows that oneday ... we will all be normal and free. Ellen x

[Lynnanne15]

I chose to have the surgery years ago but I walked off the stretcher when they took me into the OR. Since then I had 2 children and they gave me general anesthesia with c-sections to be safe. Also had to have an mri in my 8th month of pregnancy to make sure the fluid in my spine was not getting messed up.........I salute those of you who have gone or are going through this surgery. I do know a 16 year old who didn't think it was too bad.

[tslabjr7]

i had a chiari malefaction and had to go into surgery twice. it is not a big deal. it hurts more but i'm not a wimp. i hold the record for fastest person to leave hospital with second chiari surgery at children's hospital of Philadelphia. one of the best best places in the world to get neurosurgery done. and looks like i will go in one final time but not fore chiari just a check up surgery to correct my hearing loss from chiari. chiari coses hearing loss some times. it is pretty rare though.

[sabadew2]

how fast did you leave? i am 52 yrs old  had my surgery 3 wks ago today i left abt 45 hrs post surgery could have left sooner if they would have taken out iv's and cath!

[dixon0023]

I was diagnosed with a chiari malformation back in september of 08. After days of x-rays, mri's, some kind of electro shock test, and actually meeting with many of the neuro staff and the head do who is from mayo, we figured it out. Symptoms are numbness all down my right arm, right chestmuscle, and parts of my head on the right side including ear. Had surgery oct 6, currently awaiting my follow up after stitches were remvoed. It was really scary leading up, but not that bad afterwards.

[XpolymerX]

I was just told about this malformation today. I'm scared shitless of this. Can someone give me some advice/help? Thanks

[sps84]

Hi my name's Cristian from italy. At my girlfriend two years ago a good italian medic was diagnosed the arnold chiari malformation,

in italy there'isnt a clinic to operate or a medic he wont to operate my girlfriend...

I love it soo much... I'm desperate...

I' need help sorry for my orrible english

cristiansegattini at yahoo . it

[gionnetto2]

Ciao Cristian... avete provato la neurochirurgia di Pisa, il professor Ludovico Lutzemberger?

[Beachbumglcb]

hello have type i and tethered cord. I had surgeries for both. male 45 lost wife 2 houses every thing but God. You will be fine. I hace a CSF leak very samll in the dura. You should go the Chiari Institue in NY if you need more work. They are the best. Good luck. We are not alone. We all have bad days and worst days. But when we have a good day it means so much. Keep strong. You should not have washed your hair. Infections from the water. type I surgery 10 19 05. Tethered cord 4 1 08

[klburnside]

Thank you for having the awareness to document your chiari experience. I wish I had done so. I hope all goes well with your recovery. My surgery was March 13,2007. Very similar to yours. Life is much better. Not having information is the hardest part. I assumed the ringing in my left ear was from noisy machines, but after 49 years there was a better explanation. Just before the surgery my right ear started to ring as well. The RT has stopped ringing and some hearing improvement in the RT ear.

[zipperhead228]

hope your feeling better michele!They got me in physical therapy now,your a brave women cuz i went through it 2-28-08,they would have to catch me a second time.the headaches are tough neck pain still sucks,and whats up with the numb spot on foot,mines left inner heal bout size of half dollar could stick a needle in there and i swear i would not feel it,my balance still way off and the buzzing and ringing in ears is terrible,can not be that many people talking about me lol.keep fighting kid!

[StormyMonday1970]

Hi Michele, first thanks for sharing your story, second, I wanted to know why did you have to have the 2nd and 3rd surgery? I had decompression surgery back in 2001 and unfortunately symptoms are starting to come back, especially the horrid headaches and the memory loss/brain fog and the left side pain and sometimes numbness. Anyway, I was curious about why you needed to go back in for surgery.

[raulandmichele]

Well I had the 2nd because I had a CSF leak and needed another Laminectomy of C2. The first doctor messed up pretty bad. And the 3rd also a CSF leak but was by far worse then the leak before. I'm sorry to hear that your symptoms are comming back. I hope your hanging in there :)

[armywife5678]

I am 25 years old and just got this diagnosis yesturday. I have been dealing with the pressure in my head for over 2 years now. I have to meet with a nerosurgeon in a few weeks. My husband is deployed in Afghanistan till next year. Thanks so much for posting this. I have never heard of this till yesturday. This is my first comment to U TUBE... it's nice to know I am not alone.

[zipperhead228]

god bless all of us.i had my surgery feb 28th 08, headaches have come back and left pain far worse in the neck and head but overall guess im getting stronger, this disease sucks.i am a 36 yr old father of three and still not back to any work yet,good luck and i will keep us all in my prayers.hang in there army,just make sure you see someone good,2 months b4 my surgery was told by one NS that the chiari was not causing my symptoms,and at time of surgery my spinal fluid was almost 100% blocked

[armywife5678]

I have been consumed with finding out all there is to know about this rare disease! I also have Syringomyelia. I am having another MRI monday to determine if it has affected more then one spot in my spine. I am already prepared to have more then one opinion and my list of questions is getting longer each day!!! I live in KY and I am seeing a awesome NS. I have heard nothing but positive feed back from his patients.Times are tough, but all of you are in my thoughts and prayers:)

[l4courtney]

who did your surgery? I'm getting surgery done at century city hospital by a surgeon in beverly hills. he told me he did 140 surgeries and one of them was one that he had to redo so i'm just curious. :-) hope you are doing well. this video is great!

[JAVIKER75]

Hi michele:

thanks for your video, wanted to inform you that your permission is included on our website w w w . arnold-chiari . com to serve your experience to others. You can send other than your wish that we will be found to include them on our website if you want. thank you very much for everything

[justbored78]

i know how you feel. i had a decompression, and i want to say that by seeing your videos, it helped me to remember that im not alone. does anynoe know of any good chat sites for acm or something? i need someone to talk to. keep on pulling through! God bless

Theresa, 15

[econymous]

Thank you for posting these videos. I have Chiari 1 w/syringomyelia and was virtually symptom free up until 3/2008. Now, I am told I need surgery and I am scared out of my mind.

[megsmom8816]

Having surgery myself in a couple of weeks. Very nervous....have had symptoms for a long time though...and a large syrinx.