The Chiari Center Foundation

Shy Supporter 1 day ago

My little brother was6 years old when we found out he had chiari. He had meningitis and they found out then. He had the surgery in January of 2007 when he was 7 years old. The funy thing is when he first woke up, he asked for apple juice. Now hes alot better and is 10 years old

Linda 7 days ago

my story is complicated, i was diagnosed with meningitis back in 1993 from there it went to PTC and migraines i struggled on and off for years with horrid headaches, in 2006 i was exposed to carbon monoxide and was so sick i was pregnant and went for hyperbaric treatment my headaches skyrocketed from there so i went to a new neuro because we moved to another state and not much could be done while pregnant. i had an MRI and they found out I had chiari on top of damage caused by the cm exposure spinal tap done levels high ended up with spinal leak needed blood patch 2 days in hospital wonked out on diloted i take 9 different meds and see 2 diff neuros had cervical nerv block bulging disks in neck to top it all off~no one has brought up surgery yet just injections in the head another spinal tap and keeping me drugged up which i hate. i pass out all the time which they treat as seizures. gah my doctors are idiots.

Jennifer 14 days ago

I had symptoms of dizziness, blurred vision, spasticity, muscle pain, hearing loss and had been misdiagnosed with Menieres disease, MS, Lyme disease, and RSD and had gone thru a half dozen lower spinal cord nerve blocks and upper stelate ganglion blocks in attempt to block pain impulses from my spinal cord to my brain. I had seen at least 6 different neurologists for everything from hyperactive reflexes and failed neurological exams to tremors...they all had a different explanation..It was horrible..This disease is so misunderstood..i finally had a decompression surgery after my pain doctor at my local hospital was about to place a spinal cord stimulator..she was the one who had more knowledge about Chiari than any neurologist I had seen. I finally met with Dr. Woodard in Boston, Ma who performed my decompression surgery along with duraplasty and C1 and c2 laminectomy this past March..it was a horrible surgery and recovery I suffered with meningitis, CSF leak and pseudomeningocele...it is now July and I still have pain from the surgery...It is crucial that more neurologists are aware of this disease and promote awareness of it and dont drop the ball and misdiagnose...being an RN for 13 years it was strange being on the other side of things and seeing what patients suffer thru when docs are misinformed..Please spread awareness of this horrible disease...Jenn

Debra about 1 month ago

I was diagnosed with it in 2007 at the age of 35. I am 1 of 3 people in my family that has Chiari. I had my surgery in Jan of 2008 but developed a staff infection 2 weeks later. I had to go back into the hospital so the doctor could clean out my incision. I felt so good after I started to heal. The headaches finally stopped, my joints didnt hurt anymore, the pain just left my body. I felt like I did when I was a kid. Eight weeks later I returned to work but in May of 2008 I was hit by a drunk driver on my way to work. Now all the signs of the Chiari came back. My doctor says its possible that I have alot of scar tissue thats one reason it came back. But that stupid girl made all my symptoms come back again. So if the doctor says that i need another surgery, I think I will do it again, only thing that scares me is the recovery. So hard, but to feel good again is worth it.

Rebecca about 1 month ago

I was diagnosed in 2002 when I was 24yrs. I didnt think it would hurt if I did nothing about It because I had lived that long w/ Chiari & I didnt feel I needed to be on all kinds of different meds or have surgery. Well over the next 8yrs that I just tried to forget about it. It got worse my headaches, pain in my arms & legs, dizziness, passing out & ect....April 30 2010 (now 32yrs) I went to a neurologist- had a new MRI - May 14 saw a neurosurgeon (Dr. Neumann) On May 31 2010 I was in the hospital having surgery. Im very blessed to be alive. It has been 4weeks now & Im recovering very well. I have only had 2 headaches & little pain in my arms or legs. Im not sure how this will end Im really still In the middle of it. I still have a very large cyst to deal with, but I just wanted people to know NOT to put it off or dismiss systems or let a DR tell you they cant help you. CHIARI IS VERY REAL & SERIOUS!!! Dr. Neumann has saved mylife & Im more than THANKFUL & BLESSED I found him. Im praying for all of you because I do know how you all feel. God will take care of us all please know HE is the ultimate healer.

Cheyenne about 1 month ago

My daughter just turned 2 on the 12 of June and on June 16 she got diagnosed with chiari malformation type 1. She has to have surgery and will be getting it done at Riley Hospital.

Holly about 1 month ago

My 20 month old son was diagnosed with Chiari Malformation type1 and also a aracnoid cyst on the back of his brain about a month ago. He had surgery for both this past Tuesday at Dayton Childrens Hospital in Ohio. He was in the ICU for a few days and came home yesterday and is doing great!! There is great doctors for this if you can find the right one!! Dr Kiliner at Dayton Childerns Hospital is wonderful!!!

Billie 2 months ago

reading all the stories men& women have written here about how bad it is to live with arnoldchiari malformation 1, all surgeries,decreasing abilities increasing deterioration failing surgeries, families,friends not listening,taking seriously or being not supportive of what you go through all the misjudging,misdiagnosing,etc,etc,well I thought my story should be told....I was born with ARNOLD CHIARI MALFORMATION II,SYRINGOMYELIA,V.P SHUNTED HYDROCEPHALUS,SPINA BIFIDA(MYELOMENINGECELE)BURSITIS(in shoulders)ACUTE DEPRESSION,COMPLEXLEARNING DIFFICULTIES.

Shy Supporter 2 months ago

MY DAUGHTER WENT TREW THIS FOR YEARS BEFORE SHE FOUND A DR. THATS FOUND OUT WHAT IT WAS AND DID THE SURGERY,AND NO SHE DONT HAFT TO SUFFER NO MORE WITH THE HEADACH AND BEING SICKAND THANK GOD SHE CAN HAVE A NORMAL LIFE NOW AND ACOMPLISH HER DREAMS AND MAKING THEM COME TRUE, I AM VERY PROUD OF HER (KIMBERLY) LOVE U

Jamie 2 months ago

We appreciate everyone's courage in sharing their stories, posting their pictures, supporting one another, and working together to raise global Chiari Awareness, Support, and Research! If anyone needs anything, please contact us today!! Be sure to join our main Facebook page too at http://facebook.com/thechiaricenter.

If anyone wants to add me personally, as my Chiari story is on my info tab, you can do so. My personal page is http://facebook.com/chiari.

Take care everyone!

Jamie Sopczak, Founder
The Chiari Center Foundation
Facebook Page: http://facebook.com/thechiaricenter
Phone: 708.645.4081 or 877.7.CHIARI
Website: http://chiaricenter.org
Email: info@chiaricenter.org

Shy Supporter 2 months ago

On April 22, 2010; the only man i could have ever considered to be my father took his life due to Chiari Malformation. I loved him to death, and I only wish I could have told him before this happened he was the only father figure I had ever met. He was the most amazing, caring, loving, sweet man I had ever had the chance to know by that point in time, and because he stepped into my life, he and the woman I consider to be my mom, were the two people that made me realize I still had the chance to change my rebellious behavior. We both weren't surprised this happened, because of before reasons, but when it happened we were in shock. Well, I guess I could say I was in shock on the twenty third when I found out. Angie couldn't even call to tell me, it would have racked me. And she knew it, but my adoptive family told me as soon as I got in the car after school. Since then, I've been I guess you could say.. A robot? It's getting easier to converse with people, but most of the time the smiles are fake if I'm around people I know wont understand what I'm going through. I feel as I type this up, it's muggy, and foggy, making my words twist into incomprehensible things. Maybe as though I am just going 'blah blah blah'.. But I still don't know how to openly talk about this yet to anyone BUT angie. I'm almost twenty years old, and have just graduated hair school, mainly on the fact of doing it for myself, him, and Angie. Once I become licensed, I will be taking my SATS, and the ACTS, so that I can get into basic courses at TCC in north texas. Once those are done, I will be taking scholarship tests, and moving onto medical school (Neurology - which i wanted to do before my parents forced me into hair school) and on my decision from what has happened I will be going into being specialized in Chiari Malformation. I am tired of hearing that doctors are turning all those with this down, saying they can't do anything. There's things you can do to help, no there isn't a cure (Yet), but when I become specialized in this, I pray I can be a doctor in those who have Chiari can trust not to turn them down and say, "I don't know what to tell you." I want to help people with this, not just being a supporter, but also being a doctor specialized in Chiari. I pray for all of you who have Chiari every night, and hope that one day I'll succeed in this goal of what I'm wanting to do. I plan on getting my father figures picture tattooed on my back. I could never forget this man. He was too much of an amazingly awesome influence, and he shouldn't have had to go the way he did. But I accept he went, because it was HELL watching him go through it, even if he didn't always fully show he was in such pain. John Wayne Smith, I miss you. And I love you. We all do. Rest in peace and thank you for being the only dad I ever had. ( And so I cease because I this is becoming a silent crying ramble and might take up the whole page. ha D: )

Alyss 2 months ago

(Sorry I hit the wrong button)
College, I passed out my first semester in the middle of class. Nothing was happening I was just sitting and taking notes when the tunnel vision began and I went down. I had up at a heart specialist who diagnosed me with nuerocardiogenicpsynchope. I was on beta blockers for a couple of years and not had any further problems so the dr took me off of them since he didn't know whether they were helping. Fall of my Junior year of college I was in front of a class of first graders when I was hit with w severe migraine, the right half of my face went numb and my hand went numb. I had to have my teaching partner take over for my so I could sit down, trying not to let the students know that something was happening. My mom ended up bringing a friend to drive me home, other than he couldn't drive stick. Needless to say I drove and he rode along. I ended up at Northwestern Memorial Hospital where the neurologist finally diagnosed me with Chiari type 1. I was 20 and my world seemed to be crashing around me. Since then I have been placed on paxil to control the pain. Sometimes it seems to work and other days it doesn't. I still pass out about at least once a year sometimes more often. I have horrible headaches that extend down my neck and into my shoulders. There are days that I can't move my head. I get stabbing pains into the top of my skull. I have had really bad bouts of vertigo and absolutely hate elevators. I always have ringing in my ears, and have chest pains off and on.

I was married last summer and was so greatful that I have found such a wonderful man. Since we were married I have passed out several times and have had severe abdominal pain on my left side right by my hip bone. I have had every test done that is possible and even went through exploratory surgery and the dr's at Northwestern University have not found anything. I am now having trigger point injections done in that area about every month to keep the pain away. In the mean time I am the Chief Financial Officer for my husbands family bicycle shop in Homewood, IL. I am now 24.

Alyss 2 months ago

I began passing out and having severe headache when I was in about 4th grade. At least that I remember. I bounced around to local neurologists, none of which were pediatric. By the time I was in sixth grade I had found a neurologist at Children's Memorial Hospital in Chicago. I ended up being transferred to that hospital one day when I passed out after having a "migraine" for several days. I was in and out of consciousness and did not recognize my parents. That is when Dr. Schwisher diagnosed me with basal occipital migraines. I was prescribed nuerontin to help control the migraines and to prevent me from passing out. This helped for the most part. I still had the occasional "migraine" but for the most part was able to take something at the beginning of it and sleep it off. In seventh grade I tried out for the track team only to pass out on the field during a running exercise. The track coach told my mom to never let me run again, it was the scariest thing he has ever been through. My high school years were dramatic as most high school girls can be, but other than the occasional migraine or passing out episode I was relatively alright.

Bobbie 2 months ago

My symptoms began in 1996. I mistook these as symptoms of a "pinched" nerve, even when I burned my arm so badly that I now have a 2 1/2" x 1" scar on my arm. I actually felt the burn as a pain in my side & had no idea my arm was burning. I waited until 2003 to have my "pinched nerve" looked into. I was sent for an MIR & told to come back in a week for the plan of action. I went with my then 13 yr old son in tow for the recheck appt. The son & I had big plans for fun that day. Instead a substitute doctor I had never seen before proceeded to tell me & my son that surgery was needed most immediately or I was in danger of death. I couldn't shake my head hard enough to process what he was telling me. And who the hell is Arnold Chiari? I was told by this substitute doctor that he knew very little about this "condition" & I should check the internet...and by the way, here's the # of a neurosurgeon, thank you very much for playing "Win, Lose or Brain Surgery!" Guess what? There was almost zero info out there back then. Internet, schminternet. Confused, scared & quickly getting right with God, I was whisked into sx within days. After 8 1/2 hrs of sx, I was a full-fledged member of the zipperhead society.

I have alot of pain & neuropathy even now. I take more pills than my dear 71yr old dad. I'm always looking for alternative pain management courses. But the pain management I've found most helpful is a good sense of humor. Perspective is key. I don't live in a cardboard box, I eat on a regular basis, I have people who love me & whom I love right back. Remembering these things reminds me to live this moment here & now. So what if there's some pain & I have swiss cheese for a memory, right? All great labors of love involve pain & we are all just works-in-progress.

Jean 3 months ago

I had my first full blown attack (being identified as a Chairi attack by one one of my new neurologists) in Sept. 2006. First it was assumed it was a TIA, when CAT scans said no, I was started on the search of a MS diagnosis. Those MRI's came back "inconclusive" for MS and my nerve pain was treated with Neurotin & Lyrica and the weakness on the left side of my body & my balance issues were tolerated by me. I made some changes to hide those symptoms from others & to cope with them myself. Life went on with me making the adjustments I needed to when the weakness & balance issues got worse. During that time I noticed various visions issues, but again kept quiet & adjusted to them. In June of 2009 I almost lost my husband to a serious heart condition & all of my energy was spent on him. Until August of that same year when I had another full blown 'attack.' This time I skipped going to the ER (didn't want to hear once again it was nothing to be concerned about) but stopped in at a local Urgent Care facility to be told based on my complaints/symptoms I has some type of a viral infection. I checked in with my Primary Care physician a week later & he scheduled a MRI due to my "transient vision." Two weeks later the Chiari with a 10 mm herniation diagnosis came in. I first thought, "Yea, finally a diagnosis for what was going on with me," then reality hit home. I had never heard of CM so I hit the research trail hot & heavy. Now some of the things I have been experiencing on & off since my teens made some sense.

My PC told me I needed to see a neurologist so I went back to the one I had been seeing on & off since the 2006 attack. He was/is not Chiari knowledgeable and after 3 months & several unsuccessful meds attempts he told me there was nothing more he could do for me. So I basically 'cold called' a local medical facility (their main campus is farther away for me to get to), explained my situation & they gave me an appt. with a neurologist with Chiari experience. That appt. went extremely well & he set up appts. for me with three other neurologists with Chiari experience, each also specializing in another field. I have finally met with a neurosurgeon who feels that due to my now severe & varied symptoms (the first one I saw only took into consideration the CINE-MRI results which he thought were just borderline), has said I am a candidate for the decompression surgery. So now I am weighing the pros & cons. My symptoms seem to be worsening & the meds the Pain Mgmt. neuorolgist has me on are kicking my butt (and now I'm concerned about my job due to the number of days I've been missing).

So, leaving out the gory details (so many details), that's my story in a very small nutshell. And I also agree with Brandi Lee, there are way too many drs. out there who are "buttholes." It is frightening to find out (by first hand experience too often) that there are so many medical professionals so totally unaware of the existence of Chairi let along what we go through day in & day out.

My prayer & hope is that we can heighten awareness for ourselves and future Chiarians.