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The Complexity of Arnold-Chiari Malformation

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Biology 202
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The Complexity of Arnold-Chiari Malformation

Nicki Lynn Pollock

To the medical doctor, Arnold-Chiari Malformation, which may have a genetic link, is characterized by a small or misshapen posterior fossa (the depression in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal resulting in a multitude of sensory-motor problems and even some autonomous malfunctions (1). These many symptoms can come in a variety of forms which often makes a clinical diagnosis difficult. To the patient this disorder can present not only physical difficulties but also mental distress. Treatment options and their success rates vary widely, and proponents of the cause are demanding more recognition, research, and success. The study of Arnold-Chiari malformations can lead to additional questions and new understandings about the I-function, sensory-motor input/output paths and the general make-up of the brain and nervous system, but a complete understanding of the disorder may be a long time coming.

Impairment and sometimes loss of motor control of the body and its extremities is one of the many effects of this disorder. Patients may complain of headaches, neck pain, coughing, sneezing, dizziness, vertigo, disequilibrium, muscle weakness, balance problems, and loss of fine motor control (1). The senses (hearing, sight, smell etc.) may also be affected in deleterious ways. On can have blurred vision, decreased sensation of limbs, unable to locate them without looking, decreased sense of taste, ringing of the ears etc. (2).

Two ideas about the nervous system that can be better understood from these observations are the concepts of having and locating the I-function. It seems that the I-function here is very often affected in terms of voluntary movement. A person with Arnold-Chiari malformation who has lost the feeling in and control of his arm for example will not be able to move it even upon someone's request and his or her own desire to do so. Some use of the I-function is definitely impaired. However, these observations do not seem to necessarily imply that some part of the I-function was damaged, because it may very well be located elsewhere- connections may have simply been lost. A person with Arnold-Chiari can still think and have a sense of self, but somehow can not connect with the various body parts that can be affected. Some uses and pathways of the I-function can be understood, but the exact location of it remains vague.

A lack of sensory input can also provide clues about pathways within the nervous system. Depending on the severity and specific location of the Chiari malformation different senses may be affected. Again, the location of where this information is processed can not be determined for sure from these observations alone. It is obvious that the pathway needed for sensory information to travel is indeed affected but not the ultimate processing center itself.

Recently, diagnosing this disorder has become relatively easier with the advent of the MRI (magnetic resonance imaging) so that doctors and patients no longer have to rely on a symptom-based diagnosis which was troublesome for both (3). The symptoms vary widely and encompass many parts of the body. Many deemed Arnold-Chiari sufferers the victims of some psychosomatic disease before the biological nature of the disorder was understood (5). Now, with the possibility of having a genetic predisposition for Chiari and the early detection devices available, one can more easily be diagnosed properly (2).

There are both medical and non-medical ways to treat Arnold-Chiari malformations. When symptoms develop, patients should seek a doctor's advice to consider a posterior fossa and upper cervical decompression. This procedure can provide more room around the lower brainstem and promotes improved neurologic functioning, though it is not a guaranteed solution (3). Patients may also benefit from various and symptom appropriate forms of physical and occupational therapy. Some patients also explore non-traditional options such as herbal therapy, acupuncture and others (5).

The symptomology of Arnold-Chiari malformations can lead to many useful observations of the pathways used by the nervous system to maintain control and awareness of the body in terms of the I-function and sensory-motor abilities. However, due to this large range of symptoms and the fact that current attempts to treat them all are not always successful, there may be other things going on in other areas of the nervous system which contribute to the overall effect of Chiari. The situation at the base of the skull, where the malformations are readily noticeable and are thought to be the cause, may be more complicated then believed or known at the time. As always, a better understanding of what is actually happening in patients with Arnold-Chiari malformation is needed.


WWW Sources

1)American Syringomyelia Alliance Project Inc.

2)Chiari Information Exchange

3)Division of Neurosurgery Begins New Study of the Chiari I Malformation

4)National Institute of Neurological Disorders and Stroke: Chiari Malformation

5)World Arnold Chiari Malformation Association



Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

10/18/2005, from a Reader on the Web

I am writing these comments to ask for help of any kind on my situation. I was diagnosed with arnold chiari type 1 in june of 2001, i had the surgery in august the same year. it was successfull for about 3 1/2 untill i had a fall a work in april of 2005 which i struck the back of my head on metal racks. since i have had all of my symtoms return plus more. My case is very extrodinay due to me having to neck fusions prior to my chiari surgery. I have only seen 1 nuroligist and 2 spine and pain specialist and a nerocycoligist which all say that i am fine to return to work, but i still have severe headaches, sneezing, numbess in left side extremeties, drop attacks "falling spells" abromal sentations of extremeties, ring of the ears, double or blured visions. The only treatment that I am gettings is from my local faimly doctor who prescibes me 50mg Oxicotine pills to help with the headaches. If your are aware of any documentaiton or programs that can help me or you need more information PLEASE help.

11/20/2005, from a Reader on the Web

I have found a wonderful Neurosurgeon at the University of Colorado his name is Dr. Jen-Peter Witt. I suggest you contact him, possible he can help you. Good luck.

12/20/2005, from a Reader on the Web

Do not know where you are located, but please consider seeing Dr. Dan S. Heffez at the Milwaukee Neurological Institute, 414-438-6500. I, too, had surgeries to the cervical spine, and very recently surgery for Chiari Malformation.

01/27/2006, from a Reader on the Web

I also had decompression surgery in 2002. My symptoms improved until I returned to work. Then they became more severe. Everyone keeps telling me that I'm having migranes and symproms cannot return after surgery. I worked at a local hospital for fourteen years, they relieved me of my position in May because I could no longer perform my duties. It's hard to play with my children, I've gained weight, and riding in cars is hard. It's even difficult to look at a computer screen for more than five or ten minutes. If you can offer me any advice or suggestions on where to get better treatment I would be appreciative. Thank you.

Additional comments made prior to 2007
I have Arnold Chiari like Symptoms but am told I do not have the disorder because my cerebellar tonsils only descend 4mm rather than 5mm. Meanwhile no nuerologist makes any sense or diagnosis of what is causing my symptoms. I am written off as crazy. The only help I have received was from a physical therapist who does cranial sacral treatments in which they can apparantly work with the flow of cerebral spinal fluid. But, medicare is doing a new monitering system of what Physical therapists can do in their practices and will no longer pay for these treatments. I had already lost most of my financial resources when these symptoms first appeared in Dec 2001 due to becoming unable to work plus spending alot of money on alternative medicine and help with activities of daily living. I am a single divorced parent and it has been very challenging. I had stabilized within a life with many physical limitations when my son and I were rear ended in Jan 2005 by a hit and run car acccident. The PIP quickly ran out and this time with out the personal financial resources I had when my symptoms first appeared, I have been unable to pursue much help. And "without a diagnosis", I "have no case" to pursue more medical help through the auto insurance. The car accident not only aggravated prior symptoms but added many including trouble swallowing, trouble breathing when supine, urinary incontinence. Since the car accident I can only lay if inclined, the degree of incline dependant upon how bad symptoms are. At its worst I must sit up or stand to prevent intollerable symptoms. But because my MRI has only 4mm herniation rahter than 5mm I am treated as if my symptoms are irrelevant or that I am a psych case. Does anyone know about CINE done with an MRI or any other way of diagnosing Arnold Chiari other than the classic 5mm drop? Or does anyone know of an Arnold Chiari specilist near Portland Oregon? Seattle? SanFrancisco? ... Sheila Moran, 24 August 2006



Hello everyone. I live in Calgary Canada, and had surgery for Chiari Malformation in 2003. I have since had all my symptoms return. My family doctor has decided my condition is to complicated and has discontinued my care. I now do not have a doctor, my surgion has moved and there is no support in Calgary that I know of. I am a 42 year old female and can't take this pain anymore. No one understands how I feel everyday. I just want the pain to go away but it never does. I would appreciate any information on Chiari or any Canadian resorces. Please help ... Jacquie, 10 September 2006



I was diagnosed with ACM in April of 2004 and was going to have surgery the following month. During routine pre-surgery bloodwork they found me to have Von Willabrons disease with is a rare blood disease. Now my Dr. doesn't think it is safe because of possible complications with my blood. I have one of the top neurosurgeons in the nation by the name of Swiad N. Swaid. Yes, that is really his name and he is at Brookwood Medical Center in Birmingham, Alabama. Has anyone had any similar problems? ... Angela Dye, 16 November 2006



How are you doing, I was diagnosed in february of this year. I had surgery on June 5, 2006 and I am doing wonderful. My doctor name is David Barnett and Baylor Medical Center downtown dallas. He is a wonderful, patient and he is a christian. He told me I had one of the worst cases he had ever seen and that my progress is great. I have returned to work and I am back at school. I travel out of town and I feel great. Please give him a call I know he could possible help ... Ruby Canty, 4 January 2007



I was diagnosed with ACM over 10 years has recently become so bad that I lose vision and often black out. I went back to my neurologist and he did an MRI and an electrode scan and found that I have a major blockage....I am now waiting for the surgeons office to call me to set up an appt to do the surgery. However, I am terrified to death to go under for fear of not coming out of it ok. I have a 6 year old daughter who depends on me and thats what my main fear is. Can anyone explain to me about what happens in the surgery and afterwards??? Thank You ... Natashe Harrison, 23 January 2007



I have just been diagnosed due to a serious fall I had Dec.a year ago and have been referred to a neurosurgeon at Shands Gainesville, UOfFla. Can anyone explain the surgery to me. I came home after finding this out and had a few glasses of wine to cope. Truthfully I am scared. I am 58, took a fall in a pot hole at a convenience store which broke my ankle, tore the miniscus in my right knee and both rotator cuffs. I also hit my head on the curb so hard it knocked me out for seconds. Any info would be so appreciated ... Marilynn, 25 January 2007



try having acs with fibrous dysplasia in the whole left side of your head and most of your left side of your body ... M.C. Wiggs, 12 February 2007



I don't know where you are located, but Dr. Steven Swanson at the Michigan Brain and Spine Institute in Ann Arbor/Ypsilanti, MI. was fantastic. I had decompression surgery 10 years ago, and have only recently had some minor symptoms, probably due to 4 pregnancies in those years ... Megan, 3 May 2007


My daughter has pain levels of ten, she is not decompressed with 7 mm herniations. We are taking her to the Chiari Institute hopefully in July, and we have to have the dilaudid, an opioid, for the intractable chronic pain. Under the WV code laws, opioids can be overridden by a physician for this kind of pain.

Her pain is left eye oribital centering with the whole left quadarant of her head hurting like someone, she says, "hit her with a baseball bat." WE are trying to manage the pain, with vicodin in less quantities, and she is now in the hospital taking the dilaudid along with diamox, by a dr. who suffers with chiari too. It is a small world, and my chiari is 2mm, and in late fifties, I am struggling with all of the sypmptoms of chiari. Not the sixty of them, but many, and both my daughter and I share the phonobhobia, or the aversion for noises. So her migraines are never over, they just reduce them.

What meds do you know about, and why can the opioids not be used? If she does not decompress, and you have the stories that doesn't always work, how does she live and function like this?

The dr. now is pressured, he is young, and Mel has the DEA profile watch, then discovery comes with ACM. SO she needs her pain managed, and this can be a challenge. The right drugs, the right levels, and the right management.

I see no easy solution, and I just take the pain, because a four or a five is not like a ten. She has a TEN, and takes it down to a five or so.

So this is not easy, and we need some HELP ... Gary Richards, 7 May 2007



I was diagnosed with mild Arnold Chiari about 5 years ago after having had seve4al seizures. I've had no problems until recently sudden pain on one side of my head near my ears. Since no doctor seems to know much about it, do you know if this could be from the chiari? It's not a constant pain - like someone hitting my on the side of the head ... Andi NIchols, 13 September 2007



Should someone with Arnold Chiari Malformation 1 be in the Marines? My nephew just enlisted. Is he at a greater risk of injury than if he did not have this condition? ... Denise J, 30 September 2007



my mom has this promblem. she had a surgery when she was and then again when she as 26. I was really scared when I first found out but now I know it's all in God's hands ... Kali, 30 October 2007



I've been dealing with my ACM for almost 20 yrs and could not find and MD that wanted to take the time to understand and help. I was always referred to a surgeon, and we know what they like to do, which I elected not to do until I could have more of a guarantee of the results. So here are a few things that I have found to work for me. 1.Find a really good Chiropractor and see regularly, before the symptoms are too strong. 2. Excedrine for migrane at the first twing and take 3, to kick it and always with a little food. 3. Get alot of sleep, the more the better. 4. Eliminate as much stress as possible, I know that's impossible but set boundry's it helps! 5.Take frequent breaks from work if at a computer. 6. Don't work at a job that requires alot of standing, it increases the symptoms. 7. Stay physical, the stronger we stay the less likely the ACM will win! 8. Keep your weight down, the more overweight the stronger the symptoms. 9. Watch the salt intake, the swelling can be brutal. Hope this will help someone. It's years of trial and error! ... Edie, 12 November 2007


Pamela's picture

Diagnosed June 2017

I've been seeing doctors since about March. March is when the ER told me about Chiari malformation. I had never heard of it. 1st doctor Gia Kahn Do didn't want to send me for an MRI. He said "why am I gna send you for something that can't be fixed?" I didn't believe what I was hearing. I had also researched how some doctors were insensitive to this diagnosis and I was actually living it. I'm 30 with 3 little girls whome I've raised pretty much by myself. Now this. How life can turn upside down inside out. The right side is 10mm and left side is 11mm. I'm just waiting on that phone call to see the neurosurgeon. Life feels like it's at a standstill. Hopefully Dr. David Jimenez sees me and everything goes smoothly after that. Just want some peace.

Paula Llewellyn's picture

Diagnosed in 2015

I am a teacher. My symptoms started just as I started teaching at the age of 46. I started having unbearable headaches and numbness in my arms and legs. I went to my personal doctor, he sent me to do a MRI. The doctor thought it was sinus problem so he referred me to an ENT doctor. After observing the image he told me it was CM and he immediately called Emory hospital. The doctor was skeptical of surgery because he did not think it was that serious. A couple months after I had a fall at work and the symptoms were more severe. I spent 18 hours at Grady Emergency Room. After a lot of doctor's visits and fights I had surgery in April of this year. Most of my symptoms are gone, however teaching is very stressful so I'm evaluating my future in the education.

misty's picture

chiari help alberta

Still fighting for diagnosis, lifetime of debilitating symptoms dismissed. Overwhelming evidence of chiari, waiting on mri. My Most severe pain symptoms including debilitating migraines and curvature of spine that meds did nothing for have been either eliminated or greatly reduced by a unique massage therapist working out of edmonton, Alberta. He has been treating me for unbearable chiari symptoms long before I'd even heard of it. I highly recommend him for the pain, anyone close to edmonton Alberta can Google Scott kellsey rmt or contact me for more detailed information

Carrie Celeste Boelke's picture

After about 30 years of

After about 30 years of treatment for extremely severe migraines my pain changed to being at the base of my skull with sharp pain behind my eye and through my shoulder blades. I was diagnosed with an 8mm chiari. No neurologist has ever made a dent in my headaches or even treated them in a way that didn't cause a multitude of other issues. After my diagnosis a Mayo family practice doctor gave me torodol, dexomethozone and phenergan together. It was like a miracle and I could literally feel my brain shrink inside my skull and my ear canals open. And within minutes I went from pain that no one could even imagine to absolutely zero pain. I know torodol use needs to be monitored carefully, but I literally never miss out on life or work and feel like other normal humans must feel for the first time in my life. Has anyone else here had success with these meds? I am also taking TTumeric supplements that are helping manage inflammation in my skull on a daily basis!

Sarah Coad's picture

Chiari decompression surgery recently

Hi all,

Just was wondering I had decompression surgery 3 weeks this Tuesday, I also have a shunt.
My scar was itchy so I scratched it slightly and it scratched one of the dissolvable stitches and now it's a bit red and raised.
I have put Bio-oil on to see if this will make a difference.
Does anyone know if you need to contact your neurosurgeon??

Facet joint injections's picture

Facet joint injections

Agreed that a better understanding of what is actually happening in patients with Arnold-Chiari malformation is needed. Thanks for posting!

Tisha w's picture

Chiari surgery

@sheilamoran I am leaving the hospital soon from having decompression survey on a 2mm. My surgeon is the best in the area. The only reason my neurologist sent me to her was they were worried about a cavernous malformation that was also found and wanted her to check it out. She said it was fine but the chiari was what was causing my symptoms and set me up for surgery. I'm in Athens Ga.

Serendip Visitor's picture

Your post 11/2/15

God bless your incredible courage!

Have found Vitamn D daily (from the sun), IP-6 Gold, and French Grape Seed Extract "Terry Naturally" Superior Vina-100
very helpful along with moderate exercise when able. Lots of rest and low key lifestyle. No surgery for me as well
now going on almost 8 yrs diagnosed Chiari I Malformation 6 mm no syrinx.

Serendip Visitor's picture

chiari recurrence

I had my first decompression surgery in 2010. 2 1/2 years later symptoms returned 10 fold. I was unable to care for my self. Finding my prior surgeion had retired I found the help of the dr resopnsible for the training of the first wave of surgeions able to perform this surgery.
when the second dr went in he found that the first surgery was simply to conservative and that not all of the brain restricting my brainstem had been removed.
The second surgery was a success. This does not mean all my symptoms stopped. The majority of the symptoms stopping me from leading a normal life were however gone.
I have heard from my surgeon that yes, in rare cases the brain can continue to grow and create more problems later. Again it is not very common.
You should have a CINE MRI done at your 1 year mark.
I am currently starting to suffer from the nausea that was once a symptom. I keeping an eye on that but if it continues or other symptoms return I will see my surgeon again.
I hope this helps.

Serendip Visitor's picture

Natural alternatives to surgery

I applaud your courage for going the natural
route as I have done the same. My herniation
not as deep as yours.

You're doing the right things with antioxidants.
Also a simple $5 magnetic bracelet (or even two
if you have to) worn on the side of the herniation
helps keep down inflammation and pain. I buy
this a Walmart in the Jewelry Department.

Also IP-6 Gold very helpful.

I hope this is of some help. Try to keep the stress
down and keep standing to a minimum.

mk's picture

chiari 10mm.

I have been diagnosed with chiari at 10mm. I am not sure about surgery at this point so i am trying different things to get by. I use an icepack everyday so I won't have to take meds. I started juicing with a nutriullet, Ginger and turmeric included with my mixture and now walking/bicycling everyday at a gym. Would like to know if anyone out there has more natural suggestions? I would like to try natural ways as long as I can because my doctor says u would be out 8 weeks to 3 months. I really can't afford this since I have no income to cover while out and am trying to get my son thru college. I have heard to see a Japanese acupuncturist only? Don't understand that? Is there anyone out trying a different method to cope other than surgery? My doctor was honest and told me he can relieve the pressure but not any pain and more than likely it will come back. Would love to her from fellow Christians. Mk

Serendip Visitor's picture

Alt to surgery

I've been avoiding surgery 2 yrs and at 10mm. I take topamax 200mg for migraines as daily preventatives, try yoga without too much bending over, don't light more than 10 lbs., try not to cough, sneeze, strain, jog and all those restrictions. I'm supposed to walk and do a few arm exercises in the pool that gently strengthen my shoulders and neck without straining them or making it worse. Swimming would be better, they said. My neuro had me going to physical therapy where there's a pool for walking for balance issues. It totally helps. It's very difficult at first. Then, I ordered the yogaish version of a theracane off amazon to massage huge knots off wherever hurts, but not too hard. That's very, very bad.
My dietician has me on tiny meals every 2 hrs or less so my blood sugar has no chance of starting a headache- nothing white that turns straight into a sugar, no juice, except when I get a headache, I like kale, turmeric, a green apple, pineapple, wheatgrass, ginger, and spinach in a juicer. If that doesn't help, 2 alleve. After that, the whole other regime.
I use a lot of essential oils.
*10, not 2




kathy's picture

neck pain

Hi im kathy and going to be 25 this month I have Arnold chiari type 1 and had the surgery when I was 10 and for the last week I been having neck pain and its been getting worse and I have tryed streching it out and using different pillows and nothings worked and im not sure if should schedule an appt with my neurologist

Serendip Visitor's picture

questions - chiara

My son is 13 years old and has Chiara - we have struggled for 4 years not knowing what he had.
His only major symptom is the squeezing of the throat - which all the doctors thought was panic attacks.
We see the neurosurgeon this Wednesday - we stay in South Africa - not much is known here about it - the surgeon we are seeing hasn't ever operated on Chiara - we are in no hurry to do anything
The main reason I am mailing you - what was your behaviour like at 10 - did you have behaviour issues?
I am struggling to work out with my son if he is just naughty and doesn't listen or is this one of the symptoms of Chiara
About every 3 weeks - he will just lose it, it his brother irritates him or I say one thing wrong. He also has a weight issue - is this also a symptom?
thanks worried mommy Vanessa

chiari pretoria's picture

Behavior, mood issues for children in pain

Hi Vanessa, I know you said that his only symptoms was the squeezing throuth but I think he must be in some pain. Cause chronic pain via headaches and even the glaring sun made me moody as a child. Just every now and then I was not as to cope with the chronic pain and I would be irritated and snap at family.

Serendip Visitor's picture

Reply to worried mommy Vanessa

Hi Vanessa,

I want to tell you to try not to worry too much. I think that your son has an advantage in that he has a diagnoses and therefore recognition that it is NOT something he is doing on purpose. He is not lazy, or stupid or innately bad. Yes, in my case it did screw up my emotions. It still does. I get very down and I cry. But I am a good person. He just needs to understand his condition, and to know that he will always have people who understand to go to. People who will help him if he needs help. Then maybe he will not have the anxiety I had.

That was a major issue for me. Not having my problem acknowledged ruined my self-esteem and my sense of security. It was terrifying! I sensed from an early age that my life was going to be difficult, that I would not be able to handle the stress of being an adult.

My instincts were right. At sixty years old I am desperately poor because I had to quit so many good jobs. My fear of having to support myself with the debilitating symptoms, and lack of parental support, made me rush into the wrong marriage with a wonderful, understanding human being who, for his own reasons, is terrible with money! No matter how much effort I put into getting ahead, it did not work out. And I am still getting no help or understanding. My family thinks I'm a failure. If I divorced my husband and got disability I would have to live on under $1100/month. I have extreme chemical sensitivities. Try to find a place without mold or cigarette smoke for that much.

But it does NOT have to be that way for your son. He needs your help and support, which it is obvious you are willing to give him by your being here asking questions. I got none of that, so don't compare my situation. You can help him big time.

I still struggle to explain to friends and family that my kind of fatigue is not something you suck up and push yourself harder to overcome. It does not work that way when your brain is not being bathed in cerebral fluid or you have swelling in your head. You can feel the pressure. The pounding pain. You can't concentrate in a way that is frightening. Even though you know that you are an intelligent person, you sometimes look really stupid. It hurts a lot. Please do not let his happen to your son.

I failed grade nine. Went to summer school and still failed. But my parents didn't get me tutors. They implied that it was all my fault, that I wasn't trying. Nothing was further from the truth. Eventually I got a university degree, because my symptoms got much better than in high school. I am a very ambitious person and would have been a doctor or something if I could think straight and had energy.

That said, I had many years when I did manage to keep a job and work hard to raise my kids. My daughter resents me for not handling the stress of it too well. I have always had mood shifts and being exhausted does not help the situation. But I think she is beginning to understand better now that we know I have a Chiari. My son does not think I was as horrible as she does.

It is now that I am older that my symptoms have made it impossible to go back to work. I am not in terrible pain, just bad headaches that don't last more than a week. But when you have many things going on, hashimotos, fatigue etc. they add up.

It is probably not going to be as bad for your son if he gets the right help now. Does he have crying spells when he loses it? I would try to sit down with him and get him to express what he is feeling while he is still upset. It will be comforting for him to know you care and are there for him to help him sort it out. Get him a tutor if school is a problem. And if you can a GOOD counselor or therapist who also understands Chiari well--even if you have to educate them. Please don't put him on drugs. Antidepressants, anti-anxiety, Ritalin. NO no no! He will end up worse. He has to learn to deal with it in other ways.

Don't let him feel sorry for himself either. There is a fine balance between supporting him and enabling him to be a victim. That will not help. Enable him to learn better and he will stop feeling so helpless, frustrated and anxious. Maybe start a savings account for him and guide him with his money so that he can invest in a house so he is able to retire one day. He is disabled, but he deserves to feel secure.

As for surgery, be very cautious. I would only let someone with a lot of experience touch him and then only if his issues were very bad. Remember, they can be bad and get better over time like mine did. Encourage a healthy diet and lifestyle for him. Losing weight and exercising helped me tremendously.

If you need any more help please don't hesitate to reply. I am not sure how I can privately give you my email address.

Also, I did have a bit of a weight issue. I was overweight but not obese. I ate the same as my siblings but they were skinny. I had no energy though. So I didn't move around as much as them. I also suspect I had a thyroid problem and a very slow metabolism as a kid. I had all the symptoms and now I have been diagnosed with Hashimotos. The regular treatment did not help. I had to research it myself and found the right medication for me. Being too thin could be an over-active thyroid. It does that when it is about to get crash. An over-active thyroid will make you crazy.

Good luck. You can make a huge difference.

Serendip Visitor's picture



Thank you for taking the time out to reply - what a lovely informative reply.
I find myself so lost and your reply helped so much
Tanner is a lovely boy has such good qualities but to get him to do things, is so hard
You have to beg all the time
So it is hard to work out what is Chiara and what is bad behaviour -also is he lazy - does he forget things because he could not care or is it Chiara
We see the neurosurgeon on Wed - not for surgery but just to chat.

Any advice is welcome - especially how you were as a child then I can guide Tanner - because sometimes all I am doing is shouting at him and he his brother doesn't even want to come home sometimes

Lita Tomas's picture

Botox as temp relief?

My daughter gets Botox injections every 3 months for the severe migraines from the trauma induced Chiari. The relief is 40% or so for about 2 months. Then as we are entering the third month, weeks from more Botox the pain starts getting unbearable. Others with this?

Lpulido's picture

Botox for pain relief

Hi my husband has chiari and he was going to try Botox so my question is, how many cc does your daughter get and where exactly are they injected? Her forehead and neck area? Thanks in advance,

Serendip Visitor's picture

Replying tyo younique4u post

I'm sorry to learn of your challenges. I
also work with Chiari I. I understand.

Maybe this would help you and others.

I just learned that Dr. Paolo Bolognese is leaving
The Chiari Institute and starting his own center
September 1st. Here is his contact information:

Chiari Neurosurgical Center at NSPC

Email address:

younique4u's picture


I had surgery done in 2010 with a 17mm herniation. Felt better immediately after. 4 yrs later im suffering again however mri shows normal. Ive changed jobs from physical to desk. Im in pain daily but dont take painpills cuz id have to overdose for them to work... Many days i cry not wanting to continue living everyday of my life this way. Even getting ready for work is quite painful. I get off work and am immediately hitting the couch to rest my heavy head neck n shoulders. So tired of not being able to live a normal life anymore. So many things i can no longer do. Wanting to live pain free again. How can i make this possible... Regret another surgery since i remember all too well what its about, but willing to do so if it will help again. Surely cant keep this trend up. Please help and any other sufferers as well.

Serendip Visitor's picture

Neck pain

A magnetic bracelet from Wal-Mart ($5.00) worn
on the wrist on the side the neck or body in pain greatly
helps. Also, a silk or similar feeling fabric
around the neck instantly relieves pain.
NO KIDDING. Drink a lot of water that also helps
with pain.

Serendip Visitor's picture

Two comments: Please remove

Two comments:

Please remove my recommendation of Dr. Michael Munz in
Jacksonville, Florida. Very Important!

To the woman about to commit suicide, please don't.
Keep searching for answers. The Internet will help greatly.
No matter how long it takes keep looking.

God loves you............

Serendip Visitor's picture

I'm done.

I give up. If I don't hear something promising soon, I'm committing suicide. I'm about to turn 30. I'm not spending my life like this. I'd rather not have one. What's the point? Pain, possible paralysis, misery, unable to do anything with my life other than hang around and wait for death anyway.

Serendip Visitor's picture

hang in there. My life has

hang in there. My life has been shitty as well health wise dealing with chiari, cranial distortions, sleep apnea, scoliosis, chronic back pain. I just say that so hopefully you can have someone to relate to. I understand you may in the biggest of ruts and so am I. I feel the same way you do. Hopefully youre still fighting and alive to see this message. Somehow some way, we got to find a way to survive and find happiness. Happiness is very elusive for us because there is just too much shit going on, but we'll find it somehow someway.

Serendip Visitor's picture


Thank you! I'm not even sure what I posted it's been a while...but your words are golden and timely... today is better because of your kindness :)

Serendip Visitor's picture

Do Not Comment Suicide Please....

My son was 27....when he got a tick bite....thought spider bite...with in 24 hours his heart was beating out of his chest...and blood pressure through roof.....he was deadly put him on an antibiotic which did nothing. Did not know it was a tick bite.....tell you how I found. Aetna Insurance cancelled him....and after $30,000 in medical debt and being turned over to collections by the doctors for slow son had colon I went back with his release got those surgery records...and the pathology report. I have medical terms I did not know I plugged into came up lyme disease...then I read about people everywhere what they were going son was having some problems. can't get meds or treatment without said no lyme in Utah...bullshit....I took son to natural doctor....she did two blood test each one came back chronic lyme. You know where are these old time doctors...that figure out what an illness is on a they just take the money...and refer over to Dr. Bob....and take more money...and the patient run game goes on and on....until insurance cancels....medical bills ....pile up...cant work ...too ill...all over a tiny small tick. Lord help us with the US medical system. my son went to grad school just to get health insurance. Now...he has been treated on going since 2009 for lyme. But he came home said, "Mom I have two days of work left when I get back to DC....but the week after is a full week...and I am trying to figure out how I am going to physically make it." I said ok...get in the car...were going to ER. Get up there and get a PA....he does exam...and prescribes an injection for pain...I don't want pain meds for my son...I want to know why his head is about to blow off. So....we are in the ER for 5 son is getting nervous pushing sheets around his feet...asking me for help...and here we are in the ER. I went out to the main desk...where there were about 5 nurses and this PA....I said, "Look my son is ill....he use to run 16 miles in one you understand me? If he is going to stay in here and suffer...I can take him home. Are you going to do a CT or MRI on his head or what? Where are the blood test results?" He ordered a CT scan. Thirty minutes later my son has CT. PA comes back says sinus infection...prescribes no antibiotic at all...tells us to get Flonase over the counter. What a bunch of crap...that ER visit cost over $3,000 plus the CT scan. I did not care...all I wanted to do is get my son back in 3 days and pick up that CT report and disk. Get the report says whole right side of max sinus blocked. Some vein in brain blocked....and the PA sent us to the drug store to get Flonase. So I arrange for my son to see DC. I fly there. Doc looks at report says ...sinus infection...probably need antibiotic. I had already taken him to quick clinic....told them he was blowing green ...infection...need antibiotic...was $65...and we were out of there in 30 minutes. So....I told the doc ....if you look at # so and so image you will see the max blockage on the right side....also deviated septum. Doc's face goes white. I been down this road many times my self with tumors I discovered in my own sinuses....after 3 years of lying doctors. I started going to medical libray....reading ENT journals....looking at xray journals...taught myself how to read xrays....I don't have any problems with docs over the xrays any longer...I learned their system. So...the doc orders MRI....son has with and without contrast...7mm Chiara I malformation. He had sinus surgery and open his sinus...and doc did good job...he can breathe fine now. But....his headaches are not from the lyme...but from the Chiara I. Now...listen you talk about suicide....I know this mess is a lot to deal with...but you take some of this info here and use it. I had a tumor in the abdomen...two in the left lung...mass under right arm....and I am only getting started. I have pain....but I got a son ..that is dealing with a whole lot I have to be strong and keep help make his life better somehow. So...son ...please don't take your life...please. You do everything you can for yourself...and ask others for help. I will be praying for you because I know illness is hard. Please email me and I will give you ask much information as I can and things we are doing to try and help. l. Woods

Serendip Visitor's picture

Sometimes it gets better on it's own.

To the people who are feeling hopeless about this condition, please know that the symptoms can get better on their own. I am a sixty year old woman who was diagnosed ten years ago, but my worst symptoms were during my childhood and especially my high school years. The doctor thought it was migraines and I don't think my parents ever believed how bad I felt.

For many years I had the classic Chiari headache pounding at the back of my head like I'd been hit with a baseball bat. Walking up the stairs would make it unbearably worse. I would have to come home from school and go to bed and I failed grade nine because of this and cognitive problems. My eyesight would dim and it was impossible to think clearly, very frightening, and embarrassing, when your doctors say you are fine. I would tell my mom it felt like my brain was swollen. I even passed out once. Looking back I wonder if I had hydrocephalus. I wonder if I have it now sometimes because of brain fog, but I also have Hashimoto's which is much more under control due to a change in my meds and my diet.

Those headaches completely stopped in my late twenties. I have no idea why. I was able to get a university degree, raise two children and work on and off. I have always had very low energy though, and symptoms which may or may not be related to Chiari. But I made it this far, am now retired with two wonderful grown kids. I am glad I did not give up.

Ernest's picture

What's the point

Suicide doesn't solve anything, and many people who try don't succeed and end up maimed and even severely disabled the rest of their lives. I have a 15mm herniation, which caused pain in my arms and legs that, the doctors said were growing pains. Then onceI was over 21, 5hey said it was serum negative arthritis. It wasn't till my 30's when the vertigo and mind grains started, along with the pain in my extremities becoming pins and needles, like after your leg falls asleep. It took a couple of doctor visits, but I was finally sent to a neurologist who put on Topiramate, which stopped the vertigo and headaches, and he put me on Gabapentin , which has greatly reduced my pain in my extremities. My biggest issues are restless legs at night, and insomnia. I get mild aches and pains, but nothing I can't deal with. I will be talking to my doctor to see if medical Marjawana can help with the insomnia and restless legs. I'm going to be 49 in December, and even though there is pressure on my optic nerves which causes stigmas, which simply means there is a delay in the movement of my eyes when the doctor does the follow my finger test. There is no sign I will experience blindness, paralysis, etc, even though I have mild scoliosis in 4 spots in addition to my Arnold Chiari. So, don't let the fear of what could happen get you depressed, there is a lot they can do with meds, and many people have experienced successful results from surgery. Even though my herniation is 15mm, my neurologist says, there is no need for me to have surgery at this point, because medicine is managing my symptoms and I'm doing rather well. I know some people have it vary bad, but don't let that scare you and make you depressed. I was in a suicidal depression at 19, and had I done myself in, I would have lost out on so many things in my life. Call suicide prevention, go to a local clinic which should have therapy on a sliding scale, and possibly even free, and find yourself a local Arnold Chiari Malformation support group t hat can help you feel less alone.

avner888's picture

Hey, Chiari sucks like

Hey, Chiari sucks like nothing else, but suicide is not even a descent alternative. I came on here to research for my daughter, who is 23, and started having symptoms again. From what I have learned online this far is that for the majority, first time surgery does eliminate the symptoms, and for about 25% of patients the symptoms do return and a second surgery is necessary. So what I would say for you, anyone, and my daughter is do your research for your area of neurosurgeons and find one that is very familiar and experienced with Chiari; its hideous that doctors, etc. who aren't familiar with Chiari often treat their patients like their having some phantom medical issue. Find a good doctor and do it quickly, if surgery is needed then do it as soon as possible; learn from others who have Chiari and have created a healthy lifestyle. Talk to people who have lived with this medical condition; create a diet that encourages healthy brain and nervous system function. Giving up is not the solution - I know that is such a typical thing to say, but it is actually extremely true. The solution for Chiari comes in several different forms, you need to be connected - with other people who are dealing with it as well, and with a neurosurgeon with a plan.

Diane S's picture

My Friend Whitney who has Chiari Malformation type 1

How can I get a fund raiser going for a friend who is 28 years old just went thru surgery at Mayo in Rochester MN has an 8 month old ... no insurance..can anyone help .. money could b sent directly to the doctors offices and St Mary's hospital in her name....this so sad...and so rare...want to help very badly.

Cindy 's picture

Arnold Chiari

What doctor did ur friend go to at Mayos in Rochester Mn? Does ur friend have a email address ? I would like to communicate with her.

Serendip Visitor's picture

You would have to look into

You would have to look into fundraising elsewhere. Everyone on this forum probably needs money badly. THere are lots of way.s

Katie's picture

Morning headsche

Diagnosed 1.5 years ago with 26 mm Chiari. New symptom, morning headache. Wake up to it. Trunking to figure out if this is a bad sign.

Serendip Visitor's picture

Over it

I'm sorry for your pain. I sure understand.
I live in St. Augustine. It's so hard to find a NS that understands
Chiari in this area.
I finally found one who is compassionate and understanding to monitor my situation.
He is in Jacksonville on University next to the hospital.
His name is : Dr. Michael Munz
There are no Chiari NS experts in the area.
The only accredited Chiari expert in Florida is Barth Green at the University of

If you can go gluten free and keep all starches to a minimum it should help.

I hope this helps you :)

Serendip Visitor's picture

chiari crazy symptons after 5years

I am 35 female and I really have not read anything like my symptoms I can not laugh cough or sneeze if I do I have to jerk my head back and wait about 30 sec for this painful unbearable pressure to stop ..I feel like I cant smell anymore and I get headaches all the time its so weird but it showed up when I turned 30 .I am over weight I am hoping that if I lose weight it will help .Coughing scares me the most the pressure I feel is like someone putting my head under the tire of a suv .I live in Jacksonville FL and I basically had to tell the doctors wait it was they had no clue .I had no insurance for the longest time so I have not keep up with it I just deal I take lortab and every over the counter med on a regular basis im killing my liver .I will have insurance in April and really don't know where to go no body understands everyone keeps saying its stress .I am lost and in pain can u get rid of it by losing weight if anyone can lead me in the right direction I would be grateful .Thanks so much

Over it

Serendip Visitor's picture

Serendip Visitor

I had these same symptoms for years. The doctors here in Anniston, AL would just say "it's just a little headache." I knew it wasn't normal. It got worst where I was almost blacking out and I could tell it had something to do with the blood flow. When I would start getting over the pain I could feel the blood start flowing back into my head. At the age of 48 I started having real bad headaches only on the left side of my head including my face. I thought it was my sinuses so I went to my ENT doctor and he did a sinus x-ray and it wasn't sinuses and he made me an appointment with a neurologist. She said it was hormones due to my age and gave me prescriptions. Well my balance started getting bad, headaches worst, extreme fatigue, then I was in church and all the sudden one Sunday I couldn't read the words in the hymn book and my hearing in the left ear wasn't as good. Also my left eye wasn't as open as the right eye. My husband and I finally decided to just tell the neurologist "listen, I have a brain tumor or something, but I am getting worse by the day and it is not hormones." She scheduled an MRI and the next morning her nurse called name on my Dell phone as I was driving to work and said I needed to come in that afternoon, but couldn't tell me why. When I went in she told me I had Chiari Malformation and I had no clue what that was and she explained it and went ahead and scheduled an appointment with a neurosurgeon in Birmingham for me to meet with to schedule the surgery. It sounds like you have the same symptoms with the coughing which is caused by compression and you need to have surgery as soon as you can before it gets as bad as mine did. Dr. Zeiger said mine was one of the worst cases he had ever seen. My brain extended of course down in my neck and was wrapped around the spinal cord. Good luck and God Bless You!!?

Carla's picture

Thank you for this site

This site is a blessing for all of us who have been diagnosed with this, but dismissed by the very doctors who are supposed to help us. My herniation is 4-5 mm on MRI and symptoms are escalating, but the neurosurgeon I have never met reviewed my file and his office said, " he doesn't need to see me because I don't need surgery". The cervical surgeon is the one who diagnosed this after physically looking at the MRI and he referred me to the neurosurgeon. Of course, I don't "want" brain surgery, but I would like to actually meet with a doctor that has some knowledge about this condition.

My PCP is pretty clueless and when I told him about the Chiari diagnosis, he said "Oh, be glad it isn't something really serious". I think my mouth just dropped open in disbelief. He then muttered under his breath a few minutes later, "I hope you don't need brain surgery, because that is a really scary surgery". Needless to say, I will be changing PCP's. I live near Sacramento in CA and am wondering if anyone in this area has found a decent doctor to work with. You get to the point where you just want some validation from a competent medical professional.

Thank you, again, for this site!

Serendip Visitor's picture

living with chiari

I too suffer from chiari.I had decompression surgery in 1998 a disaster and then again in 2000 by Dr Jon Weingart at John Hopkins.There is no cure and my symptoms have also returned.Some days are just nightmares.It's good to have a place to vent with others who understand your suffering.

Serendip Visitor's picture

Be encouraged! The fact that you have a diagnosis is a huge help

I was a nurse in FL & had never heard of Chiari. I read, researched & sought specialists for 2 years before finding someone I trusted with my brain. I had doctors tell me that they didn't believe Chiari (13mm brain herniation) was what was causing my headaches & symptoms. That's crazy, of course it was.

I don't know how to best explain this at the moment but you can Google & see what I mean. Neurosurgeons are good to see for Chiari management whether you have surgery or not. That being said, I only wanted a neurosurgeon who had done Chiari surgeries & their patients did ok, to do my surgery. It's my brain & it's special, it's ok to be picky. A USF neurosurgeon ordered all the right tests for me but he was all wrong for me as my brain surgeon. God looked out for me. I went to Cleveland CLinic & thankfully got jerked around there because that was the wrong place. I ended up sending everything to Chiari Center in Wisconsin to Dr. Heffez. His clinical secretary spent an hour talking to me, she understood all the crazy Chiari symptons & what a difficult time we have finding help. She told me about Kathy's Place in Milwaukee where patients & families can stay. It was like night & day compared to Cleveland Clinic & everywhere else I had been. I understand how hopeless this seems at times but there's help & people that understand. If a doctor is crappy, find another one. It's not just all in your head, it's in mine too & many many others. OK, I do have a ridiculous headache at the moment but I just wanted to say hang in there, we have big brains & are special peeps. Kimba

Debra Wolf's picture

Milwaukee Chiari Institute

My daughter was at the MKE Chiari Institute yesterday. She is 29 and has been living in pain most of her life with mis diagnosis and unsucessful attempts at correcting some of the pain.

Your post is most comforting to me - I am on the Serendip site just looking for some comfort & I found it in you! What was your recovery like? How long were you down & out? How large was your incision?



Shanda Killen's picture

Chiari Malformation

Hi Kimba and all of the patients that have been doomed with ACM Type I or II. It took two years before I was diagnosed with ACM Type I. The process of finding out what I had was horrible, I was miss diagnosed many times, I was told I was crazy it was all in my head, I had seen many doctors, many different test, exams, medications and Then I was seen by a neurosurgeon Dr. Schneider who instantly told me what I had. He also told me if I was not treated it was possible I would be paralyzed from the waste down. I had falls, loss of balance,numbness, tingling,no control over my lower limbs, I had burned my right leg and could not feel it, on top of that it affected me mentally. I cried a lot, I was depressed and was very anxious. I had two surgeries the first one was not a success. I was told that it would not come back. However, now I am experiencing new symptoms such as, now I am getting shooting pains in my head the right side top and sometimes the pain is constant especially when the weather is too cold, too hot and/or rainy; I never had those pains in my head before, my right side of my body has a great sensation oppose to my left side. It is starting all over again, the test nothing is found, the medications,no control of my right leg at times, and left leg and foot swells. My neurosurgeon has since moved to the west coast and I have tried to locate him with no success. In reading about the the Chiari Center in Wisconsin it seems that maybe that is the place for most of the patients that are experiencing symptoms of Chiari. Good luck to all of us. By the way I recommend going to chiropractor, staying fit, reduce stress, mediation,Tia chi and prayer to your higher being. Shanda killen

Serendip Visitor's picture

Five years after Chiari diagnosis - Still no surgery

Hi Everyone,

As you know from previous posts, I have been determined
not to have surgery. Here's what is helping me:

* Minimal exercise when I'm feeling up to it. At least 20 minutes almost everyday.
* Paleo Diet
* Also using the principles of the "Eat Right 4Your Blood Type" by Dr. Peter D'Adamo with reference only
to incorporating the "beneficial" and "avoid foods" for my blood type.
* Also following the basic principles of the "Water Cure" by Dr. F. Batmanghelidj

I hope this helps someone else. It's taken me a long time to find. A very very long time.

Lynn M.
Chiari I Malformation, 5-6 mm, no syrinx

Serendip Visitor's picture


Hi Lynn just wondering how you are going I noticed you were doing blood type diet and watercure
Have you still managed to avoid surgery?

Kristina 's picture

response to mothers question regarding 15 year old son

I have no idea how to respond to you directly but did receive your question. My surgery will be two years in Jan. it went very well . I interviewed several neurosurgeons before selecting one. My recovery went extremely well. In fact my surgery was on a Monday morning and I was home by Wednesday afternoon. Usual time in hospital is 7-10 days. But I was up and moving by the afternoon of the second day.
As far as whether your son should have surgery or not, that's a tough call. If he has no issues I would say no. I was not diagnosed until I was 59. Led a very active life. Yes, I have since learned and realized issues I had in the past were related to this. Mine was 18 mm . Pretty darn large when ones figures that many times surgery is performed with 5 mm intrusion.
Personally I would say learn as much as you can, stay aware of your sons issues if any . Make sure he fully understands it too ( and dependent on his ability to understand and comprehend) sometimes it's just TMI. This is not a life threatening condition, annoying at times yes. But as is the case with any condition each person and how they are affected is unique .
I had a great doctor, highly recommend if in Texas.
Wish I could reach you more directly but this forum is restrictive in that aspect. Which is not a bad thing.

Serendip Visitor kathy's picture


I'm in Texas. Who was your doctor in Texas? Thanks

Kristina's picture

Texas doctor

Just got your request. I live just north of San Antonio. My doctor was Dr.Vardiman. I know several folks who have traveled to Houston from all over Texas to see Dr. Kim ( I think that is his name) would have to go back and look. I was willing to travel anywhere in the US but Dr. V posed a very good question to me after I had interviewed him twice........ if you go out of state or to far away who will do your post op care ?? He made it clear that as a general rule most surgeons are NOT going to take care of another doctors post op and for good reasons.

Where are you located ?? If you have not already done so ask to join Life With Arnold Chiari Malformation on FB. Gidget Michele is the Administrator. It has a pic of three blue jets soaring that say Chiari Warriors.

Many helpful people on there and then I would be able to have a more private conversation with you. I will post a status saying Kathy I am near San Antonio.

Serendip Visitor's picture

Kim, I am very sorry for what


I am very sorry for what you have been through.
My path has been different than yours as I have
sought to avoid surgery. Try the Paelo Diet
(just don't eat grains), it helps greatly with
symptom relief.

Me, Chiari I no syrinx, no surgery

Serendip Visitor's picture

Any Chiarians out there from Southwestern Ontario. Canada?

Any chiari people out there that have been to Chiari specialists at St. Mike's Toronto Canada