First Appointment

Hello all! Thanks again for the warm welcomes.

I'm going to see Dr. Batzdorf at UCLA on Friday. Not sure what to expect. Any suggestions?

A bit about my condition: In addition to Chiari Type I, my C1 (Atlas) has been assimilated into the base of my skull. I have been described as "Klippel-Fiel-ish" Meaning, I seem to have some characteristics associated with Klippel-Fiel Syndrome. Not to say that I actually "have" Klippel-Fiel. Also, my C2 and C3 are fused together. Does anyone know of people with similar complications?

Is anyone aware of Chiari being associated with TMJ or visa-versa? I have constant problems with my jaw getting stuck or clicking or clunking or misaligning when I'm chewing.

Also, my mother has suffered for DECADES from Chronic Fatigue and Fibromyalgia. Or so we thought. No one has EVER been able to diagnose the cause of her pain. Since it appears (to me anyway) that Chiari is hereditary it would seem highly likely or beyond doubt that my mother is in fact a Chiari sufferer also! She has severe scoliosis and several other teltale symptoms. I hope it's not too late to get her some relief. She's 72 years old. Anyone know if there is an age limit for decompression surgery? Anyone know of any doctors with Kaiser Permanente that specialize in Chiari?

Thanks again. Looking forward to being an active and supportive member of this group!

Hi Charles: WELCOME TO THE COMMUNITY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I don't really have much to add..Carla, Abby and Susan gave you some great info... Best of luck at the appt and be sure to post how you made out!

Best Regards, Thoughts and Prayers,


PS: you have a great smile!!!

I was diagnosed with TMJ too! First I was told my tooth was causing my pain. I had a needless root canal and when that didn't work I had my tooth pulled needlessly. When my pain didn't stop the ent diagnosed TMJ, the neurologist diagnosed migraines and cervicogenic headaches, and my primary told me I might need a breast reduction! Finally when my pupil became fixed and dilated an MRI was ordered and the Chiari was discovered.

I also wanted to tell you that my Dr. at the Chiari Institute told me a story about a 71 year old lady who suffered for 40 years before being diagnosed. She had surgery and for the first time in 40 years was headache free!

Abby, I am good. We had a stomache bug going through our house and now colds. I’ve learned to hold my head like a vice when I sneeze so my neck doesn’t whip forward on me! haha. Today is my daughter’s 19th birthday! I cannot believe my little baby with the beautiful big eyes and toothless smile is 19!!! Her birth changed my life so this day is always extra special to me.

Carla, what is the difference between a brainstem herniation and a brain herniating out of the skull?

I know when my mom had her stroke her brain hemmorhaged. The pressure caused her brain to herniate into the skull. They removed half her skull to relieve pressure. Afterwards she hemmorhaged again and that ultimately took her life. I asked the Dr. the difference between her brain herniating and the Chiari I had. He said the Chiari is just the tonsils and doesn’t cause brain death and would be extremely rare to be life threatening. He said her herniation causes the brain to die and even if she lived she would always be vegetative. As a side note at the hospital a few days after having this conversation with her neurosurgeon I was visiting her in ICU and the nurse said Oh! your the one with the Chiari? Apparently everyone was fascinated with my condition!

Hahaha! Abby, I’ll keep that in mind for my kid’s research papers. Susan, I do think it’s funny when the Drs. are fascinated with my condition. I guess they don’t see it that often. my family doc researched it after I was diagnosed and now has another patient with it. He put us in touch with eachother. He asked me to come in after my TCI appt. so he could find out more info! Love my family docs…their research is why I saw another neurologist after the first one said 7mm is too small to cause symtoms!

Abbt, I was laughing because Sue said you were the queen of research. I have a very hard time researching things because I always end up on some website where the info is wrong! My kids hate when I try to help them. I am learning that there are many rogue websites out there! I think you answered the question very clearly and accurately. Why is it too that so many people say different things about Chiari1. For example the neurologist at TCI told me that Chiari was not life threatening(or at least extremely rarely) even without surgery. He said it does not effect life span. Yet I often read stories of people saying that the Dr. told them upon opening them up that without surgery they would have died. I have read this numerous times or someone saying the Dr. saved their life. Would you be likely to live an 80 year life even with Chiari regardless of surgery or not?

Would surgery then since it relieves pressure make it less likely to be fatal?

Charles, I had some bones that were already fused together too.I've never heard of the syndrome which you mentioned but it sounds similar to basilar invagination where the head is off its axis causing the C2 veterbrae to migrate up into the cerebelluim. So, when I had my chiari/basilar invagination surgery, the bones which were already fused together did make it more complicated. The surgery took about five and a half hours, instead of the three which I was originally told. However, I did great and I'm still doing o.k. with some minor problems. A lot of has improved and I'm glad I did the surgery.They took the bones apart, lifted my head up higher which gave me a slightly longer neck and then built the skull around where the brain had dropped. They used rib bones along with rods, bolts, and screws to put everything back together. I have virtualy no scar even though it's been only eight months; my surgeons put all the stiches on the inside and used strips on the outside. It wasn't really horrible and it was the right decision for me. My bones had become flattened to about l26 degrees instead of the l80 they are supposed to be so my brain stem was pretty kinked. It wasn't an option for me as to whether or not to have the surgery. I was corrected to l56; he said that was the best that he could do. Even with that correction, the numbness in my hands has gone away, the dizziness and the vertigo are gone; I can walk straight instead of weaving; so many things are improved. I never expected to be perfect afterwards or for it to be a cure. I was hoping to halt the progression and to have improvements in my symptoms. Some problems still remain, but the further I get post opt, I continue to be o.k. I'm the oldest person I know to have had the surgery; although I understand from my research that a lady had it at age 86 and did well, so 72 seems feasible to me. I tried to email you, but couldn't do it.....because we weren't yet friends.

Blessings to you and your family.


I didn't mention that when I was diagnosed in Dec 07, I had tests until April 08, partially because they also diagnosed a brain aneurysm during that time, but partly because the neurosurgeon was being very thorough and wanted a good mapping of everything going on in thinking was thatthorough is good! I wanted them to know everything before they did the surgery. Just need to make sure you get somewhere who is familiar with chiari surgery and does a lot of them. I found a listing on the internet of Chiari doctors, but it wasn't really updated at the time. If you lived on the East Coast, I would recommend my doctor; he is one of the leading researchers and neurosurgeons doing Chiari. He does a lot of the surgeries and operates on people from all over the world. He's very compassionate and takes lots of time with his patients. A lot of the outcome, of course, depends on the personal attitude and the skill of the surgeon....their attitude will rub off on you. There are very few surgeons skilled in Chiari and very few medical personnel deal with it, so you will probably find yourself having to educate some medical people about your condition.....even in some cases telling them what it is. Those are the ones though who you won't want to do the surgery. It's such a personal decision as to whether or not to have surgery.....everyone with chiari won't be recommended for surgery....just have to weigh the symptoms along with the risks together with your doctor. I put it off for about two years myself after I was diagnosed, but I knew when it was time for the surgery. I hope you can stay positive.....that goes a long way. Shirley

Charles, it's great to stay positive; that will help you so much. When we have Chiari, it is so easy to blame everything on that; however, that isn't always the case. Each of have different experiences, react differently to surgeries, and have different coping skills. While, it's good to hear about others experiences, our own personal experience can be and most likely will be entirely different. Unless your doctor advises it, I wouldn't worry about whether or not to have the surgery. I didn't have my surgery until 2 and a half years after I was diagnosed with Chiari. I'm glad I had the surgery It's made a big difference for me. But some people who never have bad symptoms will never need surgery, I understand. There Researchers at NIH, Georgetown, and John Hopkins have briefed recently at the Chiari Foundations educational seminars that they are starting to realize that Chiari malformations, while they still affect only a small segment of the population. are not as rare as they once thought. With the advent of better imaging techniques and education of the medical community to recognize Chiari when a patient presents with a multitude of symtoms, they are picking up more cases that have been missed me. I agree with you that some other problems cause me more pain than the Chiari does sometimes. I had headaches for years back in the 80's and then they just disappeared and never came back. I know now they were Chiari headaches. At that time no one could help me and that was frustrating.

The surgery helps a large percentage of's a personal decision though. Even my husband couldn't help with that....I had to make it by myself. Good luck as you go through this.....stay positive and expect the best. It will serve you well.



Susan, I don't really know all the answers as to exactly what the surgeon did. You're right, the skull was opened up to make it bigger to make more room for the brain. When I feel the back of my head I do not feel a "hole". Instead I feel what I think are the rods he used and what I think are the heads of the screws. I can tell where the division took place and in between it feels like what I call railroad tracks. I'm not sure how he corrected the angle of the bones going up into my head; they were pretty flattened I understand before the surgery and still are only at l56 degrees instead of the l80 which they are supposed to be. I'm pretty sure the bones were probably used somehow in the correction of all that; but don't really know. From what I understand, he lifted my head up higher and built the skuill down around the brain. When he reattached the head, the bones were probably used in the fusion of that also; but I don't really know. I do plan to ask him that kind of stuff when I go to see him at the end of April; so hopefully I'll understand it more after that. Not going back for the Chiari but for the degenerative bone disease and the slipped disks which hurt every day and sometimes makes me have to use a walker because the sciatica pain gets so bad. I'm hoping he can help because my orthopedic doctor calls me a "ticking time bomb" and says he can't help with any of that because my spine is too collapsed. He also jokes tht he has about 3000 other patients he'd rather have them me. Since my neurosurgeon helped me with the Chiari when others said they couldn't, I'm hoping he can help with this too. I always tell myself to keep a good positive attitude, BUT being in pain does get old and it does make you tired. So just doing what I can to hopefully keep improving. He's helped so many people who were in such bad shape, I have faith in him, so giving it a try. The appointment is for the back, but going to ask some other followup questions about the Chiari too. Hope everybody is having a good's beautiful here where I live.....very sunny but a little cool.



Susan, I spent 8 hours in my surgeons office and he went over everything with me as to what he was going to do for the surgery. I went with my Chiari surgery questions which I printed from the internet and asked what he was going to do, how he was going to do it, how many he does every month, his success rate, whether or not he has had patients with complications (he said only two), and about 20 other questions. He answered them all very patiently. I was there for so long I told him he would have to give me food if I was going to be there any longer.....and he did. After the surgery, his office gave me his blackberry number so I could text him whenever I had a question. He was very good about answering me back. If he wasn't in surgery, it was usually the same day. He even accompanied me to get an additional CT Scan he wanted before the surgery so he could tell them how to do it. He spent lots of time with me before the surgery. But when he did the surgery, it was more complicated than he even had thought. I never asked to see pictures of the surgery afterwards; it just didn't seem to matter at the time. Now I'm curious and want to see them. We did discuss everything afterwards at my followup appointment, but I never really asked where he placed rods, screws, and all that kind of stuff.....just didn't care about the methodology, I guess. I did get more into the specifics of my aneurysm surgeries when I had those and looked at all the pictures on the computer. With the chiari, I have just concentrated most of my energy up to this point doing everything I can to get a good recovery. I try not to do much of anything that will stress the nervous system or make me too tired. That's why I have absences from the computer and still really don't use it very much. I have to look down at the keyboard even if the screen is at eye level; I find that worsens how I feel because typing puts strain on the neck and the nervous system. Very happy with the doctor's communcation......he's very down to earth and very compassionate and caring. When he sat at the foot of the gurney and said a prayer for me before the surgery and asked God to retore my life so that I could enjoy my family and friends - not a word about himself - I knew I had the right surgeon.

I pray for that too Susan; unfortunately with the medical system in this country, everyone doesn't have access to the proper care.....and that's sad for a country with the wealth that the United States has. We've gone from number l in the world to about l7th or l8th in health care,I believe. O.k. that's enough of my political statement I guess. Just something I feel compassionate about because we go all over the world and build better roads, hospitals, schools and infrastructure than we have here. It's time we take care of our own citizens. I AM lucky to have some good doctors and my neurosurgeon is one of them. I've had doctors before who sometimes act like they don't know you if they are with their colleagues. He's not like that at all....very down to earth. I hope everyone is having a good day and choosing to be day at a time! Hugs


Charles, I agree with you that Obama Care didn't go far enough because the public option was left out. That does away with care for a whole lot of people who can't afford it. Having spent 40 years in the Government and a lot of it on the hill, I know though that's it impossible to get anything done without compromise because of the different ideologies, so I guess we were lucky to get any kind of health care reform passed. The sad thing is that so many people vote against themselves because the politicians say the right things....but have hidden agendas. Anytime you hear the word "small business" (that would mean large business under the SIC codes), not mom and pop operations and when they mention "entitlements" or spending cuts to balance the budget, they are talking about reducing benefits to the the lower and middle class income folks. Health care is one of them. The insurance companies didn't spend millions of dollars lobbying against the health care reform because it wasn't a good idea; it was because it affected their profits.

I don't like to get too political on this kind of website, but I do caution everyone to take a good look at the 20012 budget plan being taken up in the house; it will totally do away with medicare for anyone under a certain age (I don't remember what it is but it's around 50) and will privatize it right back to the insurance companies. It will also destroy medicaide as we know it. They willl give you a voucher for medicaire and YOU will be on your own to buy insurance whether you can afford it or not. For Chiarians with a prexisting condition, you will be "up the creek" because the cost, if someone would sign you on, would be so high you couldn't do it. And, we all know what happens when you turn health care over to a profit making entity. For those of you who are on disability social security and depend on Medicare this is a real important issue. Senator Ryan's budget plan also cuts the tax bracket down to 25% for the very wealthiest people while cutting all these important medical programs which affect some of you. Added to the about 39 large corporations like General Electric and Bank of America I understand who don't pay any taxes now, that will mean more cuts for lower income folks. Not only do these corporations not pay any taxes but they get back millions of dollars in tax rebates becae of tax incentives. It's really a shame. Sounds off the subject, but it's not.....get that money back and we could fund health care for those who need it. It's really sad when we're the only industrialized country in the world which doesn't take care of health care for our people. You need to write your congress person and let them know how you feel if you don't want to risk losing what benefits you have. Even if you don't depend on Medicaire now, it affects our future.

I'm with you Charles on this one; For those who don't want the Government making decision about your health care, I would say there is someone who is doing it now; they are called insurance companies who are profit driven......right Charles!!! As Americans we all should be frustrated and angry.

Hugs and Blessings


Charles Daniel Kelly said:

Frustrated and Angry!

Anthem / Blue Cross has denied an imaging process that my neurosurgeon has prescribed. Dr. Batzdorf called Anthem personally to explain the need for the imaging, but they still denied it. It has been nearly six weeks and after hours on the phone and being redirected to all the wrong people I am being told that my only recourse is to file an appeal. And what if that is denied?!.......No answer…..

I have to say that if I was fortunate enough to live in Canada, England, Australia, Brazil or any number of other countries with perfectly and equally capable neurosurgeons, that I would NOT be having this problem! In fact, I probably would be preparing for my surgery by now. If not already recovering.
At the cost of appearing to be antagonistic or confrontational: To anyone that subscribes to the ideology that sarcastically and arrogantly refers to our President’s attempt to reform our pitiful and embarrassing health care “system” as Obamacare, I say this. He didn’t go far enough for all the flack he’s getting to do something for the physical well being of everyone that lives in this country. And to anyone that says that “Socialized” health care will only mean waiting in lines, I say, I already do wait in line. The only difference is that I have to pay $585 / month to wait. Only to be told, “NO”. And even if they do finally say yes, I still have to pay 30% after I meet the $500 deductable! I would gladly and willingly pay at least 585 more in taxes to avoid this insanity. And more than likely, we would all pay much less in taxes to achieve a single payer system. Much less. But the corporations are too powerful to allow us to know the truth. That they are in business to make money, not to make us healthy. There’s no way around that argument.

In a for profit system such as ours, the only thing that matters to Anthem or any of the others is their share-holders bottom line and the CEO’s bonus. And to the people that warn of “Death Panels”…I can guarantee that Anthem would rather I die before they have to pay for surgery or, god forbid, one more MRI.
As it now stands, I am in the process of hiring an attorney that will sue Anthem for what they should be doing willingly. Which is taking my doctor’s advice and getting the imaging done that he knows I need. And of course, the lawyer will want Anthem to pay their fees and so on. The cost of which will be handed down, not to the shareholders and CEO but to the customers. But of course, the same people that call it “Obamacare” are the same people that want to disallow me the right to sue. How ironic.
How tragic that in this country that claims to be so many great things, really isn’t. Least of all, taking care of the very people that do make it great.

If I could move to Canada, or anywhere else, I surely would.

It is nice to know, because it's frustrating to not know and not be able to do something about it. Hopefully she can be helped now.



Susan Erickson said:


So glad to hear that you now have a reason for what has been causing your mom's pain!!! Not celebrating the chiari but always good to know what is causing problems.

I also hear ya on the insurance and the frustration with insurance etc!!!! I went through it and still go through it. It can drive us insane for sure!!! It certainly makes everything worse when dealing with that!!!!

Were all here for you my friend!!!

Much love,

Hi Charles......

I am glad that your mom was finally validated with a correct must be overwhelming to her..yet a relief at the same time,ya know...

Good point about kids and siblings being monitored for Chiari..took Julia 11..Monday to a good NL and she is MRI done....but he will see her again in 6 mths..we keep a h/a journal for her.

now..YOU...what is happening with the testing, insurance and such???? let us know. thinking of you.