Community, Resources, Society

Extreme Makeover Home Edition Builds New Home for Chiari Advocate

Julie Carter and her three daughters all have Chiari malformation, a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal, which causes severe headaches. Nearly a half a million dollars in debt from brain surgeries, they lived in a refurbished chicken coop. An advocate for Chiarians and founder of Chiari People, Julie and her family have a new home courtesy of Extreme Makeover Home Edition.

Chiari has more than 85 possible symptoms and is frequently misdiagnosed as migraine or a host of other headache disorders. Other conditions associated with Chiari include syringomyelia, scoliosis, tethered spinal cord and pseudotumor cerebri.

The show’s executive producer said they received more nominations for Julie than they ever have for any one person. The builder of the home has an excellent profile of Julie Carter and day-by-day photos of the project. Some places to learn about Chiari malformation:

If you know of good Chiari resources, please leave a comment.

The show airs on ABC this Sunday, October 21.

48 thoughts on “Extreme Makeover Home Edition Builds New Home for Chiari Advocate”

  1. Thank you Kerrie i will certainly take her for Yoga and you mention havign someone to talk to i think she needs to spend some time with a Therapist. Thank you once again. Karen

  2. My daughter was diagnosed with Chiari after a fall at school. She got severe headaches and blurred vision. In april she was operated – posterior fossa decompression 6 weeks later she returned to school, got sick with influenza – a few days later admitted to hospital with severe headaches. She also had an infection where the dr did the decompression, she was treated in ICU and a few days later another operation – this time to insert the RV Shunt. She recovered quickly from this procedure and was home in less that a week. We decided to keep her at home for 6 weeks to make sure she recovers completely. She returns to school next week. She has bouts of depression, has put on quite abit of weight due to the EPILIN medication she is taking. Neurosurgeon says she has to stay on it for 6 months. She often gets shaky hands esp when holding a cup her hands shake and she says she has mild headaches but not everyday. She complains of being tired and sleeps allot. I would like to hear form other Chiari people – how they recovered after the operation, did you also take EPILIN and for how long. Any advise on how to lead a normal life after such an op. My daughter is dealing with teenage hormones and now this – self esteem very low. I want to send her for physiotheraphy or any exercises you can recommend. I thought maybe Yoga will assit?
    i look forward to hearing from anyone who can share their story or advise me on life after Chiari operation.

    1. Karen, I don’t have Chiari and haven’t taken Epilim, but I have had weight gain from a different med and depression. Yoga has been a wonderful way for me to feel like my body isn’t “broken.” It taught me to focus on all the hard work and good things my body does for me, not the ways in which it has failed me. I’ve found it to be incredibly empowering.

      Seeing a therapist who specializes in illness (whether chronic or short-term) could be very helpful. A therapist can both give practical advice (like how to work with and minimize her symptoms) and help her cope with the changes in her life due to the operations. There’s a lot of grief, loss and fear surrounding such events. Being able to talk with someone who understands and can help manage these emotions is invaluable.

      Best of luck to your daughter. I hope the rest of her recovery goes smoothly.


  3. Hi I was diagnosed in April of 2011 with Chiari, I am 56yrs old and have been misdiagnosed for over 20years. In Feb of this year I started with headaches, then my symptoms progressed, nauseau, tinging in face, weakness, fatigue, lots of symptoms, I am seeing a neurologist at Toronto Western Hospital, have had 3 MRI, 2 CT and having another complex MRI, in December. I continue to work, but it is difficult. would love to talk to anyone in my area, Toronto Ontario Canada, who is also dealing with this, or anyone who would like to chat about their diagnosis and what they are doing.

  4. Hi I’m a 36 year old that has had chiari seence birth never knowing that it can be handed down my mom saw the show first and asked be to watch later that evening as a result i am now doing research to see if my mom aunts and cousin shows some of the signs I’m worried because my mom and 1 aunt are in their 50’s and the other aunt is in her 60’s and suffered for years thank you for all you do and being on the show without that my 4 other family members might not have to suffer to much longer

  5. I’m a 58 year old woman and like a lot of you, I was watching a rerun of Extreme Makeover last week of Julie and her family. When I heard her talk about her chiari I saw my entire life’s symptoms pass before me. As far back as I can remember I’ve suffered with severe headaches as did my mom and one of my sisters (my sister has also been diagnosed with MS). Now one of my daughters has the same fate plus she was diagnosed with scholiosis in middle school. She is now 36 and suffers every day as do I. I have ringing in the ears, severe neck pain with other pain up and down the spine, lightheadedness, dizziness and recently I started having low blood pressure which is causing me to black out briefly (I usually have high blood pressure). I’m having rapid heartbeat, I’m cold all the time if it’s over 79 (and I live in FL), and I’m having tingling in my extrimities. My balance is not good and my short term memory is suffering.I also have a lot of congestion and coughing but I’ve been to a vascular Dr and he said all I have is a chronic post nasal drip but none of the meds seem to help. I just went through heart tests, brain tests, including brain MRI, spine xrays and nothing was found according to the doctors. That’s kinda funny since the last MRI in 2005 showed spondylosis and bulging disc at C5-6. I have an appointment with my pcp next week where I intend to bring up chiari and see what he thinks but in the meantime I will go get my CD and the report on the MRI of the brain. Thank you Julie and everyone else for your information and sharing your stories. This may not be what we have and I hope it isn’t but it’s one more thing we can cross off.

  6. Hi Julie,
    I know how very busy you are and thank you for making it a point to get Chiari’s out there. I have just recently been diagnosed and with the diagnosis I have lost my job. Since being home, I have noticed a lot more of the symptoms that I have ignored over the last 26 years. I have always had sever headaches/migraines since the age of 5. My mom thought that I had a brain tumor. I wish she would of pushed more for a brain scan but I don’t know if anything would of come of it due to the fact that not many doctors know much about Chiari’s. I went to a Neurologist who finally diagnosed me at the age of 30. Though as much as she told me, she had to look it up as she did. I really don’t know much about Chiari’s except what I have learned online and after watching Extreme Home Makeover with my boyfriend. Thank you for everything that you do! Hopefully someday, no one will have to deal with this horrible malformation! Thank you, thank you, thank you!

  7. I just watched a re-run of the extreme makeover show they did on your house and i would like to say Good for You! I have a chiari I malformation and am very symptomatic and i also hve a pseudo-tumor cerebri. I do not know what it is to go a day without pain in my head or neck. I dont knw what it is to be able to turn my head without pain or to go outside without sunglasses, even in th winter. Tlenol is a part of my daily routine, along with diamox, which causes alot of side effecs, go figure. I really appreciate all the people that you ar helping and i commend you!

  8. Hello Julie,
    I just watched Extreme Makeover and your new home is absolutely gorgeous. You and your family well deserve it. I pray that God continues to bless you and your family. I know the pain of migranes myself, but do not have this disease. I also pray that you and your daughters have a painless life. Continue to do the good work that you do as I saw that you touch many peoples lives. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 This is my favorite verse that I share with you.

  9. Im blessed to know that we arent alone in this. she was diagnoised in november and had one week to prepare for a life time of changes. She cant be alone because she falls and has severe i mean severe headaches everyday and cant go for long rides in car. also burning in her joints that enable her to do much.

  10. i to am going through chiari malformation with my 18 year old and so confused and lost. im still looking for a neuro that doesnt say its not like for all her symtoms to be chiari but it is. needs help in new jerwey

  11. My daughter was born with a hemangioma- while being treated at University of Michigan at the age of 3 decided to try and remove a mass of the hemangioma- prior to the surgery she received an MRI- long story short- surgery was cancelled and my daughter was diagnosed with Chiari Malformation. This explains why she always passed out when she cried, why her feet were always “pokey” (3yr. old words)and the headaches (which were diagnosed as childhood migraines). After much research and meeting with a few neurosurgeons- we decided to go with Dr. Frim at University of Chicago Children’s Hospital. He said she had many syrinx that took a majority of her spine- he recommended surgery- She has had the decompression surgery with dura patch and is doing well-she just turned 9 and has never passed out again on me but she does still complains of occasional headaches. I have great hope for her and am so grateful for a wonderful surgeon like Dr. Frim.

  12. Hello, My name is Katie and I am 20 years old. I lost the past 2 years of my life to Arnold Chiari. I watched this show and called my doctor the next day to get an MRI to see if I had it. Turns out I did, I started having headaches a few years back and was just told it was migrains..but now i am nauseous, dizzy, quick movement like cars, water in the shower and kids running make me dizzy, i have numbness and burning in my fingers and arms, i have troubles walking, hearing and seeing. I just moved to Victoria BC and am seeing Neurologist #7, Im told he’s great and has worked wonders!! I see him on the 23rd, fingers crossed for surgery!

  13. Hello my name is Mary Cowgill I was dianosed with Arnold Chiari Malformation January 4th 2010 after years of going to ther docters and them telling me everything was ok it was just migraines at the time they had misdianosed me I had insurance now I am uninsured and having to go through all of this so it would be nice to talk to others who have this condition.

  14. Awesome watching!! I live in New Zealand and watched the episode with Julie and her family. I have been diagnosed with chiari malformation and its good to see some exposure on NZ television. Very happy for Julie and her family

  15. Ihave suffered from Chiari for 10 years. My nuerologist said “wear your seatbelt and pray you dont get into an accident”. I was recently diagnosed with EDS, which answered a lot of questions for me (symptoms). What is interesting is that my son has Marfans syndrome (also a connective tissue disease) and recently had heart surgery. Many of his symptoms (balance, headache, concentration problems) could not be connected with the Marfans. Thank you for all of this information, I am starting to realize he may also have Chiari.

  16. I watched the show when it aired at that time I knew my son who was 1 1/2 yrs old was diagnosed with it. I went to every doctor possible telling them there isn’t something right about the way he walks, developmental delays, excessive saliva, etc… He also had eye twitches from side to side. He had a MRI for his eyes in which they found Chiari Malformation. Nothing was recommended though they said most symptoms he had would correct themselves. Shortly after he was diagnosed I was having headaches, muscle weakness, dizziness when I sneezed amd laughed too hard. I began to wonder but ignored it for 3 years until after my 2nd son was born and my symptoms became considerably worse. I had an MRI done at the end of February and was also diagnosed with Chiari Malformation Type 1 (15mm). I’m stuck between a rock and a hard place do I risk surgery and it doesn’t work or do I deal with the pain and enjoy my boys. (Soldier, Iowa)

  17. sence watching the home makeover special on julies family i have began to wonder if i am suffering form CHIARI. some where between 2-4 years ago my mother had 2 surgerys for this condition and we were never aware that it was hereditary! im not sure of the symptems but i have extreme back pain along my entire spine and sometimes at the base of my skull! i get the tingles in my fingers and entire hands and dizzy spells. i am only 19 years old :{ i am very nervouse. i am in a relationship with a wonderful man and we plan to marry in the fall. we would love a family … could this be stopping us from having that family?”?”? i have so many questions. please help!!!
    cassie (bennington, VERMONT)

  18. Thank goodness for this site. I am a 37 year old mother of 3 and have battled these symptoms for 11 years. In the beginning (my sx started after delivering first son) I was told I was in denial that I had an autoimmune disease when the prescribed prednisone started making me “collapse” and drop everything including my newborn. Needless to say I was a nervous wreck, couldn’t feel my hands and feet, and hurt all of the time. Our local neurologist that I was sent to after insisting something neurological must be going on, laughed in my face. I don’t know how I haven’t cracked throughout this ordeal. I was able to get my insurance to allow me to go to NC to a neurologist recommended by my pediatrician’s friend whose mother had MS. At first he was positive I had it as well, by this time I didn’t care what it was, just an answer. Up until this time I had worked 9 years as a dialysis nurse , was never absent and loved my job, and being a new mom was my lifetime goal. I was diagnosed with Chiari and surgery recommended in 2002. Unfortunately except for two days of slight “tingling” back in hands and feet, nothing has changed and last November I had to quit working as a school nurse due to my fatigue and pain. (I had to quit my dialysis job in 98 due to the symptoms that began in Nov.97) I have had to apply for disability (been denied) and now have a lawyer. I have three beautiful children and I spend my life in the bathtub (burning hot), napping, or taking pain meds. Please let me know if there is a specialist in Atlanta or nearby Athens. I am desperate more now than ever since my 7 year is now displaying symptoms. CAT scan has already pointed towards chiari and we are having MRI soon. PLEASE help me.
    Desperate mom in GA
    Kelli D.

  19. I am a 41 year old mother of three. Symptoms all of my life. Four years ago, during month-long bronchitis and coughing spells, I felt a jolt in my head – and symptoms went downhill from there quickly in a very severe way! All intensified and I started the four year search to find out what the jolts to my head were and “buzzing” in my brain. Once diagnosed – I understood that my ailments, from childhood – were all the same thing, Chiari. My diagnosis was Chiari with a syrinx in the spinal cord. Had Brain decompression, laminectomy of C1 and C2 and dural graft on the cerebellum on January 29, 2008. AMazing surgeon in Tampa Florida – Dr. Ralph Rydell. He caught the Chiari from my XRays after three other doctors had missed it for four years – including the Radiologist reading the films. I am leaving out all of the misdiagnosis stories that happened over the four years of searching, but what I believe saved my life was my knowing something was wrong with me and not listening to the doctors until I found someone who listened to me, ignored the reports and looked at the films himself to make his own diagnosis! If you have a syrinx – don’t let them tell you to wait – it is more damaging than the Chiari. And in my case, the Chiari caused the syrinx. My 6-month post-op MRI showed the spinal fluid (CSF) had enough room to flow to the brain, and there was no evidence that the syrinx had ever existed. My headaches are minimal (usually only monthly, related to menstrual cycle). Jolts to brain have only happened two times in 10 months. All symptoms are gone or minimal! Thank-you to Dr. Rydell – he is the BEST! I owe him my life! Good luck to everyone!! Trust yourself about your own body. You’re not crazy – you know what you feel. Find someone who listens to you!

  20. As i’m reeading these stories I can’t help but feel extremely exasperated and empathetic for your situations. I’m sixteen and was diagnosed with a Chiari malformation a few months ago. Although my symptoms arn’t nearly as bad as most of what’s posted on here, I do have regular headaches, neck pains, backaches, fatigue, eye strain, and dizziness. I feel that long years of confusion and doubt should also be included as one of the regular chiari symptoms, and i definetley suffered my share of that as well. Before the doctors at UCSF got it right i was dragged all over the place, from my family doctor to a physical therapy center to a massage therapist to a nuerologist to a headache clinic to an eye doctor and FINALLY to a chraneofacial ward who knew what was up. It’s a frusterating path to obtaining that MRI and establishing the correct diagnoses and I’m so glad that this malformation is finally getting some recognition! Even at a mild level like mine, chiaris seriously detract from the quality of your every day life and just suck the energy and will out of you. Anyway, i’m getting surgery this summer, and i’m a little nervous but mostly excited to eventually know what its like to live without this burden.

  21. My son’s story is so different from everyone else’s. He just turned 15 yrs old. His story started about 2 years ago. His grades started to slip, he complained of foot pain. We would buy new shoes with better insteps and make him study harder. Alex started complaining about back pain about 9 – 12 months ago. We found a new pcp (personal reasons) & found both of his feet were etremely pronated and that was probably causing his back pain also. We went to the specialist and bought inserts. Fixed the feet, not the back. Back to the doctor. Found the scoliosis. MRI found the Chiari and the syrinx. Alex has had NO OTHER SYMPTOMS until lately. The scoliosis is progressing quickly. He does need a Boston brace 20/7/2 yrs. He is beginning to get pressure in the base of his neck and the dr noticed pressure behind his eyes. I don’t know if that is normal for Chiari or not. The dr. wants to do the surgury as soon as possible so we are looking at having it done in the next 3 weeks at Mass General in Boston. I feel my son is very lucky after so many of the other stories I have read. My heart goes out to all of you.

  22. I found out I had Chiari 9 years ago. My life and my family has changed more tnan I could never
    thought it could.I was so sick with headaches, falling all the time because of the balance problem, losses my sight, eyes jecking, hands shaking, legges and feet hurt all the time, sick at the stomach,dizzies is really bad, I still drag my body out of bed and go to work, but I teach special ed. children in an a elementary school. I feel I relate to how they sometimes struggle to get thing right because everyday is struggle for me. My problems got worse after a long 2 mile hike down and up a hill on summer school field trip. I also had 3 surgeries with in a year which had been hard on my body. My symptoms became so bad the doctor tried raising my medication,but didn’t help I had been Dr Oro patient when he was in MO so I have go see himm in CO. Ireally don,t know how we are ging to pay for this but I have come to the place in my life where I really don’t have one. There one great thing has happen youngest son has been married for 10 years and tried to have a baby for 9 years they are going to have a baby in September of year. We have taken all os my husband 401K out to pay my medical bills. now thee is no money left to use. You think worring about what is going to happen to you because love my family I have 2 sons and 2 grandsons tomorrow we find out what the one on the way is! I want be here and be a whole person not living on the couch on weekends because I worked all week and used all the energy I have. I can thought was told at first I only 3 years to live well I have since learned I had so many bad headaches I new the doctor was wrong but I not sure that this disease makes you feel like you are dying. I am foughting to stay alive for the love I have for my family. I just don’t know how we are going to pay,but the lord has got this he well get us rest of my journey.I just pray it becames easier. Anyone that has this and has someone that lives close to them you are so lucky to have someone that kows what you are going though because so many days I feel so alone but I wouldn’t wish this on anyone.

  23. I found out I had Chiari 9 years ago. My life and my family has changed more tnan I could never
    thought it could.Iwas so sick with headaches, falling all the time because of the balance problem, losses my sight, eyes jecking, hands shaking, legges and feet hurt all the time, sick at the stomach,dizzies is really bad, Istill drag my body out of bed and go to work,but I teach special ed children in an a elementary school. I feel I relate to how they sometimes struggle to get thing right because everyday is struggle for me after long 2 mile hike down and up a summer school field trip. I also had 3 surgeries with in a year which had been hard on my body. My symptoms became so bad the doctor tried raising my medication,but didn’t help I had been Dr Oro patient when he was in MO so I have go

  24. I am 33 years old, but I feel about 60. Before I was diagnosed with chiari in 2000 I was a very active person. I have 20 nieces and nephews so I always was up for a catch or play football or anything to have fun. Now since 2000 my life has changed so much that I can’t even throw a baseball as far as I could before and my passion is hockey. I realize this is reality and to be alive is the best thing in the world. The pain will never go away, but neither will I keep trying new medicines and treatments to help me. I wish everyone in the world who has this disease or even those who don’t know they have it yet all the best. It is a struggle, but with friends and family their is a great deal of support necessary to get you through this. I watch home makeover everyday with the carter family and I feel like I have known them for years. This is a good way to help ease my pain and I wish I could take all there pain away because they are wonderful family with three beautiful daughters. I have a 2 year old daughter and we are expecting our second child in October 2008. I worry everyday that I might pass the disease along to my children as well. Best to all of you and you are not alone in dealing with this

  25. For about 7 years I’ve had increasing symptoms (constant retroorbital pain being the worse), told I have chiari and atypical facial pain (?) They are offering an occipital nerve stimulator to see if that works. All posts sound familiar and I understand frustrations. Has anyone tried any type of nerve stimulator, the new type being occipital?

  26. My name is Joyce, I live in Florida. I am 40 years old. I was diagnosed with Chiari Malformation in November 2007. They thought it was M.S. But ruled that out. After alot of tests. I had surgery in January 2008. I was very fortunate to have a great group of doctors, from my neurologist to my nero surgeon. It took them 3 months to diagnose me with Chiari Syndrome. It was a great sucess, so far. Good Luck to all.♥

  27. Has any body out there been diagnosed without any symptoms? I am 44 years old and had an MRI for a sinus issue and was told I had Chiarr. Now of course I look for the symptoms. Is is true that some people with Chiari never have any symptoms?

  28. Yes, I saw the show last night and about fell out when I heard about the Carter family. Finally, Chiari is getting out to the public. TO add to my story, one doctor told me that it was in my head too! I guess he was right.

  29. I was diagnosed with Chiari in August 2004. I had surgery-brain decompression in Octoober 2004. The surgery was a success..I could use my right arm again and my headaches and aches and pains went away. However, in the last few months, my headaches are back and no one knows what to do.

    My story began in Jan 2001. I thought I had a stroke because my right side would go numb and I could not use it or it would hurt so bad. I was diagnosed with a mini stroke. I went to several other neurologists and they diagnosed with MS. I took daily injections for MS and joined the MS society. I then went to a MS specialist to find out the best medicine to use and I was told I had chiari. I then had surgery.

    I need assistance in finding a neurologist who knows about chiari so I can get help with my headaches. I have been to all of them in my insurance plan and they all misdiagnosed me. I can not got back to the MS specialist who found out I have chiari because she only deals with MS. Does anyone know of a neurologist in GA or in the Southeast who is a chiar specialist?

    I am sure glad to find this website.

  30. Hi – I’m 27 years old – I was diagnosed with Chiari I Malformation I’m 15mm – when I was 21. After I started college I started having headaches – My neck was bothering me constantly and as far as I can recall I have suffered from dizzy spells, lightheaded, head and neck aches and horrible ringing in my ears. I’ve had more MRI’s than I can count and I’ve seen a bunch of neurologists and neurosurgeons half of them telling me to have the surgery and the other half telling me I’m “not miserable enough”. At this point I’m waiting to see if I ever get miserable enough – I’m not sure where to go from here.

  31. Hello I am 27 and was just diagnosed with Chiari I Malformation (8mm herniation- whatever that means). I have always suffered with headaches and neck pain but never thought it was a problem. I ended up in the ER a couple weeks ago and the doctors thought I had spinal meningitis because the neck pain and head ache were horrible. They did a cat scan and they seen a bump and did an MRI, sure enough it is Chiari. While I watched this episode of Extreme Makeover and they were talking about their headaches and neckpain, I was thinking that sounds like me, but I blew it off as a mindless thought. There I was watching this episode and I had Chiari Malformation. I see a neurologist this week and my insurance is dropped the end of this month (I was on a temporary insurance and now I am in a very bad position thanks to whoever invented pre-existing conditions). I have a constant pain in my neck that is annoying but I guess it is something I will have to live with.

  32. i had surgery for chiari malformation and syrinx in 2003 i had never heard of this until i was diagnosed it took me two months to decide to have decompression surgery but i felt it was the only thing left to do i had been back and forth to doctors for the same systoms for about two years until finally i told them quit treating me if you are unsure and find me some specialists or something because i refuse to keep taking medicine on a maybe its this or maybe its that i am glad i had the surgery but the damage that cannot be reversed still causes me a lot of pain maybe if i was diagnosed earlier things would be different i dont know

  33. I am 58 yrs old and just found out I have Chiari. My neurologist said very little about it to me, he said unless I loose my balance or have trouble swallowing, he would have to do a brain compression. I did not pay much attention, I was looking for the cause of my neck and shoulder pain and he said it was arthritis and spondylosis. I would not have payed any more attention except 3 days later I saw extreme home makeovers and heard the word Chiari and heard the mother say, the only relief she got was in a hot tub. My GP had just written me a rx for a hot tub. I decided to search the web and find that I have a lot of symptoms and have had them all my life.

  34. Hello fello Chiarians…
    A few weeks ago I was diagnosed with Chiari. Since then I have read a lot of information about this sickness. My symtoms do not seem to be as bad as what I’ve been reading. I actually feel ashmed to even mention them. I have lightheadness, dizziness, vomiting,and headaches. Because I’ve been fairly healthy all my life my doctor ordered an MRI and Chiari was discovered. It has been recommended that I undergo surgery but I am wondering if I should just leave it alone and deal with my symtoms. I can function at about 80% on most days. Can someone please share I am soooo nervous!!

  35. We are in the hospital now with my 11 year old son Jordon. He was diagnosed with Chiari and cranial instability in August 2007. He just underwent surgery to correct both. He had no syptoms other than headaches. He played tackle football and was involved in every other 11 year old activity. If it had not been for our family doctor ordering an MRI, we never would have known. Once we saw the neurosurgeon, he said it was a miracle he wasn’t paralyzed or worse. He is recovering more everyday, and our hearts and prayers go out to everyone affected by Chiari.

  36. Hello there,

    I just wanted to say I seen the show with Julie Carter and her family. I rarely watch Extreme Home Makeover. But this night I tuned in and instantly got goose bump when I heard that the family had Arnold Chiari Malformation. I was told I had ACM about 4 years ago, without ever hearing about this before I was scared. Underwent a few surgeries to help with the pressure and pain. Thank you Julie for inspiring me .

    God Bless you.

  37. Great post ~ the more we talk about Chiari and raise awareness, maybe, just maybe the medical community will begin to see the light! The docs at the Chiari Institute are blazing trails in the realm of Chiari ~ I, myself am effected by Chiari, EDS, CCI, Tethered Cord ~ but am trying to get my insurance company to understand the importance of going to The Chiari Institute! I try to focus on reading these success stories:
    so that I keep a positive attitude about my prognosis. Keep writing about Chiari and associated problems. ~Lacie

  38. Hi Kerrie, I watched the Exteme Makeover show last night on Julie Carter and it was amazing. My family watched it with me and we were all in tears. Thanks for the post!

  39. Chiari changed my life. It completely obliterated my life that I had when it took over. My ‘freinds’, my husband, most of my family, my career and my health all gone in one swift flick of the wrist. I spent 5 long terrifying years being misdiagnosed, told I was a hypochondriac, told it was ‘all in my head’, ha… that is one of the most ironic jokes of Chiari.

    Most ‘experts’ will say there is nothing wrong or it is all in your head when it truly is all in your head! I saw no less than 2 dozen doctors of all flavors and one finally believed me. He ordered the MRI that showed the Chiari, the MRI was at my request, I wanted to rule it out. I discovered Chiari after long nights researching my symptoms on the Internet. He then told me it was now all up to me to find a neurosurgeon to treat it. He said ‘let me know how it goes, bye.’

    Then I found The World Arnold Chiari Malformation Association – This led me to TCI, The Chiari Institute and the brilliant surgeons there. Long story shorter, I was decompressed at TCI in March of 2005.

    I was able to walk again unaided and go off most of the medications I had been on, at one point I was on 20 different meds. What I didn’t expect was the new attitude I got from a lot of people and doctors. It was the new; you had the surgery so now you are fine. Not true in my case. I still have pain issues, balance, headaches, confusion, memory issues, fatigue and others. All symptoms were helped by the surgery and I would have it again in a heart beat but, they are not gone from my life.

    The more attention this disease gets the better the quality of health care those of us that are suffering and seeking that diagnosis can obtain. I truly hope people, Chiarians, will not have to search and suffer for so long just to get diagnosed and the treatment they need.

    Boy, I do go on ;p this took me 2 hours to type with breaks needed to rest my head etc. Thank you so very much for the opportunity to get more information about Chiari out into the world!

  40. Greetings Kerrie!
    Thank You for giving us a voice!

    I recently visited the Chiari Institute in NY- and was diagnosed along with my precipitating illness- Ehlers Danlos Syndrome-(EDS) the resulting condtions of Cranio-cervical Instability (CCI) and Tethered Cord, (TC)
    ~after 20 years of being mis-diagnosed~

    These conditions are, to my knowledge, even less known than Chiari! The symptoms Are the Same- much, much more than headaches- including drop attacks, gait abnormality, loss of motor function, extreme vomiting and nausea, spasming to the point of seizures…
    The surgeries are also very- major-

    (CCF- Cranio-cervical Fusion- fusing the neck to the skull instead of decompression)

    I Urge you to include Ehlers Danlos Syndrome- the ‘mother’ of TC and CCI
    (and Many other complications)
    in your voice to the people-
    The MedicaL community and Public Desperately need to become Aware!

    ~a voice reverberating from a canyon, deep~

    more information on EDS at:

  41. I have suffered from chiari all my life without knowing what it was. As a child I had drop attacks. My dad would comment that I could just be standing there and I would fall in a heap. He thought I was weird. I had migraine aura as a child and thought it was something like monsters.

    In the last few years (I’m 45 now) I have finally been treated for migraine. I now have a diagnosis for trigeminal neuralgia. Which is extreme facial nerve pain. I believe this is coming from the pressure in my head from the chiari malformation.
    I have severe headaches on the back of my head and quite often cannot sleep or work.

    My neurosurgeon is ready and waiting to do the decompression surgery. My neurologist is just tryig to manage the symptoms to keep me away from surgery. Brain surgery is very frightening!
    I believe that I have tethered cord as well. Which will keep tugging that portion of the cerebellum into my spinal cord.
    I am also hypothyroid and vitamin B-12 deficient which are both typical with chiari patients.
    I have a cousin who was born with chiari malformation as well. He was born with brittle bones disease as well. So it could be genetic. They say that chiari is from your mother’s mother’s side. He is my cousin on my mother’s side.

    And such is the life of a chiarian.

  42. I’m so glad to see that this event has brought some well needed attention to a very unknown illness. I am an RN who has seen this condition from both sides of the hospital bed. I have also had the misfortune of being misdiagnosed for 3 years before finally having one diagnosis make sense of my many symptoms that never made sense before (as a group). So many doctors & health care professionals know so little about this. Years ago I was always unsure which symptoms to even share with doctors… for many reasons… as a nurse I “tried to make sense” of these and give them “only the needed info” thinking that these “vague” symptoms were’nt worth mentioning & maybe I “was paying too much attention” to my body. Only later to have that “vague” symptom turn into a big problem. When I was finally diagnoses (in 1997), & the doctor told me the diagnosis ~ I had never heard of this disease, nor could find anything in libraries or online. Now there are many great sites out there and it is very strange reading almost anyones “story”… because they tell my exact story~ maybe some vague differences…. but at least if I was justb now beginning to have symptoms and I read this… I would be more certain that this wasn’t just “another misdiagnosis” & I would find hope & support.

  43. I was really excited to see you post about this. Chiari is my silent friend, enemy, uncertainty in life. I am never sure what to call it. I started having headaches a few years back and my first MRI revealed a Chiari Malformation, but due to the high levels of controversy that surround this condition, neurologist #1 and #2 and a neurosurgeon have all told me its too small to matter and that I simply have migraines.

    Of course, I have questioned this intensely and in the end (ur, present), have run with the migraine theory, its much easier to get treated for, much easier to be respected for and any pain relief is good pain relief. Not to mention the idea of having surgery to provide potential relief for my chiari malformation has never appealed to me.

    Wow, thanks for listening to all of that. I just wanted to say thank you. I know a lot of people read your blog and this is a condition that needs well written attention brought to it.

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