Serendip is an independent site partnering with faculty at multiple colleges and universities around the world. Happy exploring!

The Complexity of Arnold-Chiari Malformation

SerendipUpdate's picture

Biology 202
1999 Second Web Reports
On Serendip

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


Serendip Visitor's picture


Thanks Lynn for your reply... In my situation however, the MRI does show chosen and I do have symptoms.however a nystagmus test and balance tests prove negative. have some individuals experienced the same results with tests? It seems that doctors farewell, art least with certain neurologists that as long a there is enough CDs fluid and certain nystagmus tests prove negative, a certain amount of doctors feel that the condition did not become symptomatic after the accident. again my question is, can people suffer from these conditions even though balance and nystagmus tests prove
s negative.

Lynn M.'s picture

P.S. To my last post. I

P.S. To my last post. I have the exact situation you describe
re Chiari made symptomatic.

Lynn M.'s picture

Yes, you can be symptomatic

Yes, you can be symptomatic and it does not show
up on an MRI. I was in a car accident which made
it symptomatic.

Serendip Visitor's picture


Can someone with chiari who is symptomatic still suffer from symptoms even though mri shows no cfs block or syrinxs.
Thank you.

Ashley H's picture

Delivery after having decompression surgery?


I was diagnosed as having a Chairi I Malformation in 2005 and had a cerebral decompression soon after. I am now 8 months pregnant and hoping to have a normal delivery but no one can give me an answer to whether or not that would be a good idea. So I'm just wondering if anyone has had a baby via vaginal delivery after having a decompression and if there were any complications?

Many Thanks, Ashley

Julia's picture

Chiari and pregnancy

Hi Ashley,

I would get a C-section. I did not know I had Chiari until after I had my children. After my first child, I had so many problems with my rt. hand that I had to go to physical therapy to use it again...and other things felt funny with my head, neck and spine.
Then after my second child....I was in labor until I got up to 8 cm's dilated...stupid nurse had no clue...and I almost had my child naturally, though I signed for an epidural!! I had back to back contractions and felt a ton of pressure on my head and lost my vision during then...and almost lost my mind from so much pain. I was shaking out of control from the pain when the antes. finally tried to put the epidural in my spine. My husband had to hold me tight.
I truly believe that experienced worsened my situation with Chiari...all that pressure and my heart beating so fast. It took 7 years for me to get my Dr. to give me an MRI...due to constant complaining about the back of my head and headaches to him, plus just many diff. neurologic issues that seemed weird. I was diagnosed with Chiari and have a 6-7mm herniation.
When I told my Ob/Gyn about it, she said if they had known about the Chiari and I, they would have done a C-section in both of my deliveries.....I don't know, I'm not a Dr., but I do know that labor can put alot of strain on a woman with Chiari....and even after surgery, I would be really afraid to let my body undergo such stress.


Serendip Visitor's picture


I agree with Julia. I was diagnosed with ACM 15 years ago, and was told by my most recent neurologist that I should not have anymore babies, especially naturally. She explained that it puts too much pressure on the body, including the herniation. Interestingly enough, I was also told that if I can make it through menopause without having surgery I may never need it. She explained that with age, our tissues and bone mass shrink, and that will leave extra room. I have been to 5 different neurologists, and have never been told that before.


Lynn M.'s picture

Dolres, I understand how you


I understand how you feel. In the beginning its very overwhelming.
No Chiari I does not turn into Chiari II. Surgery not always necessary
but its important to see a NS experienced in these surgeries.
For a starter, see and search Chiari
Malformation for a good overview. Also google: World Arnold
Chiari Association for an accredited Chiari doctor in your area.
You and your daughter are in my prayers,

Lynn M.'s picture

Chiari I Malformation

I live in Northern Florida and was wondering if anyone has found
a competent neurosurgeon in Jacksonville, Florida that has
done their decompression surgery and they had great success.

I have gone the natural route in treating symptoms and share
with you what has allleviated the situation:

* Drinking water - Can help circulate CSF
* If you have to eat close to bedtime, take acidopholis. You
won't feel terrible when you wake up.
* Vitamin C also helps for the above situation when taken
before bed.
* For pain - Feldenkrais foot exercises. No effort and can
be done laying or sitting down. See book RELAXERCISE
by Dr. Moshe Feldernkrais
* Classical music by Beethoven. Google Beethoven classical
music on youtube. This alleviates stress.

Hope this helps someone out there who wants to take no meds.

Mary Jo Pickett's picture

arnold chiari

Lynn M,
I had surgery at Mayo Clinic Jacksonville. It is important to have surgery to stop the progression
of the symptoms. The surgery went well.

Mary Jo

Amanda's picture

chiari 1 doctor

Hi Mary Jo-

I am currently using Mayo for my Chiari 1 however, the doctors that they currently have me seeing are more vascular specialists and are trying to tell me that my Chiari is asymptomatic even though I have almost all the classic symptoms of symptomatic including seizures, tremors, sleeplessness, pain in joints and muscles, hyperflexibility, severe migraines, vision issues, etc. Who was your doctor and how big was your herniation?



Paula's picture

chiari 1 malformation

I went to my local er on january 12th. I was hallucinating, colors and flashy black spots, so severe it scared me to death! My neck, shoulders and head hurt so bad...I have an extremely high pain tolerance by the way. They took an ray and saw that I had a slight herniation in my cervical spine. But couldn't tell me anything else. Hospital gave me Valium and ultram. I followed up with my family doctor two days later and immediately schedule MRI of my neck and brain. A previous MRI, bout a yr ago, revealed a n adeoma on my pituitary gland...these mri's that were performed recently didn't have contrast. But they revealed 5mm brain herniation from cerebellar tonsil right side, with a lesion as well. The neck MRI stated the same and also showed a lesion on my thyroid. So I have a lesion on pituitary, brain, and thyroid! What is goin on!? My family doctor s GD awful and has been no help. He completely omitted the chiari results to me, thank god I ask for copies of long have I been walking around like this? I have had such a laundry list of symptoms for years...
I have a spine specialist appointment tomorrow and an endocrinologist on Wednesday.
My biggest complaint would have to be the extreme dizziness, numbness thru out my body, constipation, dry mouth, sensitivity to temperatures, head pressure, headaches or migraines, my right eye feels droopy, I constantly squint, my ears always ring n constantly feel full! Insomnia s a problem too!
Tired of feeling like poopy!

Wish me luck...willing to accept any feedback.

Shannon12012's picture

Paula :) Luv hang in there

Paula :)
Luv hang in there don’t stop until you get the answers that you need.... I'm just back to work today and although I still have no "real" answers I am hopeful thanks to this form and my friends and fam... I will keep you in my prayers and you will get the answers you need


Dolres Ensinia's picture

my daughter.

i just found out my 14 year old daughter has type 1 arnold chiari, donthave any real answers yet , can this turn into different stages?? does she absolutely need surgery?? i couldnt sleep laST NIGHT JUST THINKING ABOUT ALL THIS, IS THIS COMMON IN CHILDREN AS WELL? WE DONT HAVE OUR FOLLOW UP TILL NEXT WEEK.. SO I FEEL SO LOST PLEASE KEEP US IN YOUR PRAYERS. AND GOD BLESS ALL THOSE WHO SUFFER FROM THIS DISEASE.

Serendip Visitor Sonya's picture

Hopefully, by now u have some

Hopefully, by now u have some answers, but just in case don't worry. Chiari 1 doesn't turn into the other types. I'm 41 & been having issues because of this almost my whole life but just diagnosed this last year. I recommend research. Educate yourself so u can be her advocate. I wish u & your daughter the best.

Shannon12012's picture

New to this and scared

I have read may of the post on here and thanks for making me feel that I am NOT alone! In May of 2011 I was at work when I had what I thought to be a stroke turns out it was a TIA (I lost the use of my left side and my speech) after the battery of test CT blood test ect. the Dr told me they didn't know what was wrong ask me about stress the "go to" when doctors can't find a answer. I went hm still frustrated and undiagnosed saw my dr who put me on blood pressure meds. Fast forward to last Friday 1/20/12 once again I was at work and fell succumb to a TIA (same as before lost left side functions and speech) the EMT's came to find me with a BP of 175/189 I'm taken to the hospital where I'm admitted and retested CT, blood work and MRI to be told nope not a stroke (btw thank you God!) ok after 3 days in the hospital (thinking am I crazy?!) my strenght was slowly returning along with my speech and as I sat in the hospital room I had ANOTHER! TIA!? more blood work CT and moved to ICU for two days... I have seen every Neurologist in that hospital... they sent the Pysch Dr they ALL said "I don't know"... We have learned what it is NOT just not what it is! So I laid in my third hospital bed in 5days I prayed and ask God to show us what this is and I found this site.

Does anyone else feel the onset of the TIA?... it feels like someone "unplugged" my nervous system or my brain and it starts like the left side of my face is touching a old tube tv after it's turned off that static moves down my left side until it is "powerless"

Any feedback is appreciated thank you and God bless


Julia's picture

What is TIA mean? Do you have

What is TIA mean? Do you have Chiari and if so, how many mm's is your herniation? How is your spinal cord?

Shannon12012's picture

Transient Ischemic Attack

Transient Ischemic Attack (TIA or Mini-Stroke) I dont know my mm nor the conditon of my spinal cord I only found out what ACM was this week

Cassandra B.'s picture

can someone help??

Hello, I was diagnosed with Arnold Chiari brain malformation syndrome april of 2010. The doctors said it was pretty Benin. After being put in the hospital for a week for severe headaches. I have had headaches as long as I could remember. When I would get home from school my mom would put a cool rag on the back of my neck and rub my temples. I suffer from blurry vision, ringing ears, and I get numb on the left side. I have had extreme pressure pain in the back of my neck head area for the past few days and I feel like I am going to lose it. I moved from Portland t Oo Chicago and transfered to the Native clinic here. The doctor is rude, won't help me and her nurse acts and seems like she is on meth. Im am lost and don't know what to do anymore. When I take asprin, ibprophen or tylenol it makes my stomach hurt and doesnt help with the headaches. I have two small children that don't understand why mommy doesn't want to play. What do I do?? Thank-you for reading, your time aand responses!

Serendip Visitor's picture

Doctor who can move the herniation back

Dear Cassandra,

I have a doctor of osteopath who through OMM can move the herniation back into the skull. He has successfully treated two other ACM patients besides myself. I have yet to hear of any other doctors in the world with such success (with such low risks involved).

Email me your number if you would like more information.

(: Jenn

Serendip Visitor's picture

who through OMM can move the herniation back into the skull. He

where is he located and how many treatments did it take?

Ana 's picture

chiari malformation -osteopathy

Hello, my name is Ana. I am 37 years old. A month ago Ive been diagnosed with CM . Ive read about Chiari and it sounds so horrible. Ive red also about Chiari osteopatic treatments in other forums too, but none of them says what is this exactly and where I can find doctors. Please, tell smth about your case and the name of the doctor . Thank you .


Serendip Visitor's picture


My daughter has recently been diagnosed with ACM. Can you email me information about the doctor who
can do this?


Serendip Visitor Maggie 's picture

Omm? Dr moving herniations back? Please Respond

Hi, I. Read your post of Dr, moving herniations back? Please email me with any information , how to contact? this possible? My life is basically over, very tired...any hope is a blessing..please contact me with anything to help find this Dr..

ANN DWINELL's picture



Lynda, Serendip Visitor's picture


Will you please share

information as to the osteopath's contact information.
Has this treatment relieved all symptoms?

Many thanks!

Amysue Taylor 's picture


My daughter in law is learning OMM in med school. My hubby has ACM. Who is the dr usingOMM for ACM?
Thank you so much, this sounds terrific.

Donna Mace's picture

Please send me any

Please send me any information. I am researching. Also, do you have mri scans for before and after?

Donna Mace's picture

moving herniation back into the skull

My phone number is I would love to hear about this procedure, how you are doing and of course the doctor and anything else you can think of to tell me. Thank you for posting and giving new hope. Donna

Lynn M.'s picture

Please advise what city/state

Please advise what city/state your
osteopath doctor is in. I live in North Florida.
If he is in my area, please advise his name.
Thank you,

Serendip Visitor Cindy's picture

Doctor who can move the herniation back


I saw your post on this forum. Can you please email me the name of this doctor, where he is and how to reach him? My son's ACM symptoms are getting worse and I am terrified of the surgery.


Julia's picture


Hi Jenn,

What exactly is OMM. Could you please explain it and what is the name of the Dr. who performed this procedure? Where is his practice?

Julia R.

Serendip Visitor's picture


As I was reading your post, I felt like I was reading my own story. I was diagnosed 1 year ago. The Doctor told me it was nothing to worry about because it was only a 2mm. But yet, I was experiencing practically ALL the symptoms of Chiari1 Malformation. I have done alot of research and get different opinions from different Doctors. Some will say that it is nothing to worry about unless it is over 5mm, where other Doctors will say it does not matter the size, you can experience symptoms no matter what mm you have. I have also had severe headaches pretty much all my life. But a year ago, it came to it's peak. I saw a neurologist (headache specialist) who put me on several medications. I just could not tolorate the side effects, I am not a pill taker. So I discontinued and refused to take them. The headaches continued with a vengence. It got so bad that I had stroke like symptoms and was rushed to the hospital on 4 occasions. With each ER visit, I was kept in the hospital for a week at a time. They ran every test imaniginable. I truly thought it was the end of my life. I was getting these terrible episodes where I thought I was dying. Along with all the other symptoms (migraines, dizzy, ringing in the ears, numbness, pain in my neck and head, pressure in my head-I thought my head was going to explode, and just a feeling that I was going to die). I had MRI's, CT scans, heart tests, you name it. Finally, the neurosurgeon I was seeing suggested I go to a psychiatrist. I thought, there you go...they think I'm crazy! I left his office thinking that no one understands what I'm going through. It was hard for me to fathom going to a psychiatrist. I have always been in control and level headed. It finally got so bad, and I was feeling like I didn't want to live like this anymore. I decided to get evaluated through my insurance at a mental health facility. While I was in the waiting room, I experienced the worst feeling I've ever had. By the time I got in the back for my (they call it intake review) I was crying and in so much pain in my head. I told him of my not wanting to live like this anymore. They sent me for a nights stay in a mental hospital. It was the worst night of my life. I knew I did not belong there. The next morning they called me into the office where there was a medical doctor (she was fantastic!) and the psychiatrist. After examining me and asking ALOT of questions, they determined I was having panic attacks! Before this visit, I had 6 doctors and none of them told me it may be panic attacks. Panic attacks are a very common symptom of Chiari. I have found this out by doing alot of research and listening to other Chiari patients. They put me on Klonopin. I was afraid to take it at first. They prescribed me 2mg at night disolved under the tongue. I cut them into 4, so I only take 1/4. I have not had a panic attack or a migraine in 6 months. They don't make you feel weird or anything. They do help me to sleep the whole night through. I have no other side effects. Since I am taking such a low dose, I do not worry about getting addicted to them. If I do get a migraine, I take Imitrex. They take the headache away immediately without side effects like aspirin, motrin, or any other narcotic (which never work for me anyway). I'm telling you this because you mentioned you felt like you were losing it. That is exactly how I felt. My suggestion is to try Imitrex for your migraines and a small dose of Klonopin at night and see how you feel. It wouldn't hurt to try this. I feel your pain, believe me. I hope this helps you....


D'Aireus Of Arizona's picture

Chiari 1/2/3 Malformation & Decompression Surgery

I was diagnosed with Chiari 1 back in 2003 I had, had bad migraines since grade school however my nurse then told me it was normal for an active kid my age to have them... Long story short not until my sophomore year during football games and track events did anyone find anything out, when I would pass out and be out for hours on hand (shortest time 1hr 30 mins) did someone who worked in the health field with my mother notice the Chiari. I would have headaches so bad I would be bed stricken for days, I was on ever migraine and seizure medication possibly know or FDA approved and nothing worked. On July 10, 2009 I was hit by a drunk driver pulled from my car drug into the middle of the highway and left for dead, I was then bumped to Chiari 2 and paralyzed from the waist down after several moths of ICU and CCU I was then sent for emergency decompression surgery because my pressures were so I the doctors didn't under stand how I could see, and thought it had a part in my paralysis because I had no spinal fractures or injuries other than narrowing. After my surgery for 1 day I had no problems then my headaches gradually got worse and worse all over again after 6 more moths of rehab I was finally released to go home from the hospital after my accident. Til this day I have gotten only one diagnosis which was that I had a spinal stroke. My headaches are getting worse day by day I have days I feel like im having a stroke I have the 7-10+ on the pain level headaches everyday. My neurologist have put me on Oxycontin, Oxycodone, Hydrocodone, Tanzinidines, Topamax, all at max mg and amount a day and many more however none of the medications work please I JUST WANT THE PAIN TO GO AWAY! If anyone knows of anything please let me know... Im at a stand still at this point in my life I am only 22 and I just want to be able to have a day with out any pain or headaches.

John's picture

Chiari type 1

I have suffered with headaches from I was a child,treated as migraines.In 1985 I was diagnosed with having Pseudo Tumour Ceribri which caused severe intense pain, excruciating giving me a Dr Heckle and a Mr.Hyde personality.This was accompanied with intermittent blindness and swelling of my optical disc a condition called papiladema which can lead to blindness.Lumbard Puncture(draining of C.S.F Fluids) was used as a method of treatment as my medications Diamox along with anabolic steriods didnt help at times.Within 2-3 weeks the intra-cranial pressure would return which made me a chronic case .My Drs were very confused they wanted me to put a shunt in however I decided against this as I wanted to explore all possibilities available to me.After seeing lots of Doctors I ended up at the Montreal Neurological Hospital in 2004 where I was seen by a Dr.Liam Durcan wonderful man a keen listener and very calm,it is very important to relate easily to anyone who treats you.I was diagnosed with Chiari Type 1 Malformation,this I was told is a textbook case.Both illness had similarities Pain, Obstruction in vision ,Blockage of C.S.F Fluid.The latter contributed tremendously to the former diagnoses.I have had consultations re: decompressions,however I am been monitored by my Drs as im told this does not require surgery at this present moment.I have the symptoms of hoarseness,pain on sneezing,lifting heavy things and I have the other illness to deal with.I believe in alternative medicine and take my overall health very serious,remember the body functions as a whole and if one part is out of sync it can affect other parts.Weight management and eating healthy helps, tremendously. I take supplements which helps me remarkably,Fish Oil,Magnesium,Co-Enzyme Q10,Selenium and lots more.Most importantly no matter how much pain I may feel my FAITH supersedes my pain.Having a positive attitude is one of the best medications to take as worrying destroys your immune system and throws your body out of wack .It blows away any benefits of your Medication and or supplements.If I dont tell you im sick you would never know.You have to maintain a positive attitude and P.U.S.H (Pray until something happens,always works just believe).

Serendip Visitor's picture

help please.

hi. my partner had decompression surgery just over a week ago and he is suffering from 'migrane' headaches almost all of the time. is this normal and all part of the healing process or does this mean it has not worked? please help i am so worries and paranoid. Thanks

Monika's picture


I had awful pain..called dr and they gave me some super duper steroids that tweaked me out for some days but finally ended the is a hard and long healing process..but should get better slowly...watched for fluid build-up below occiptical bone, not good, call dr immediatly..good with anymore questions or just for support

Rhys's picture

ACM & Mental Health

I was diagnosed just over 10 years ago - I was 15 years old and had been suffering undiagnosed for a year. I suffered the most painful headaches imaginable and my neck was constantly stiff, I would choke when I drank water and sneezing became a major issue. I was also diagnosed with Hydrocephalus. I can only describe the first year as hell. Not one person believed that I was ill and consultants were ready to write me off.

I have had two operations (a Shunt and a decompression), and have been given the all clear. I live a very normal life now (apart from a severe distrust of Dr's).

One thing that I've noticed however, is a growing obsessions. I have obsessive thoughts, which I never used to have and I wonder if this is related.

I do not know anyone else with ACM (my uncle had Hydrocephalus for different reasons). Does anyone know of a relationship between ACM and Mental Health?

Monika's picture

I was obsessive before my

I was obsessive before my surgery, after not such much bc I figured "don't sweat the little things!" I've never heard any studies on a relation between mental health and acm

Dr. David Sewell AP's picture

Patients should try hypnosis

As an acupuncture physician who is also a clinical hypnotherapist I would like to suggest to patients who are suffering from the complications associated with Chiari to try hypnosis. Western medical science has been studying hypnosis for over a century. It's utility for pain management is well established in the medical community. Less known, but even more intriguing, is the effects of hypnosis on the brain's neuroplastcity. Emerging science indicates that hypnotherapy can achieve remarkable effects in helping the brain to rewire itself after strokes/CVAs. Chiari patients should seriously consider working with a hypnotherapist to not only help their physical discomfort, but with other symptoms as well.

stephanie mims's picture

where is Doctor Oro?

Hi Robin, I am not going to tell you to " look him up" I think that is soooo rude. Doctor Oro is located at The Neurodurgery Center of Colorado and the Chiari Care Center. 1444 South Potamac Street Suite 170 Aurora, Coloraod 80012 303-481-0035 and faxline is 303-752-5240....Any questions, hit me on facebook....(stephanie mims)

Serendip Visitor's picture

chiari 1 malformation

Hi Stephanie,
I was just diagnosed with chiari 1 malformation last month. My symptoms consist of severe neck pain and throbbing in the back of my head and tingling in my face. I have also developed essential head tremors. Are you aware of essential tremors stemming from the Chiari? Did you have Dr. Oro operate on you?

Serendip Visitor's picture

Dr. Oro in my eyes, saved my

Dr. Oro in my eyes, saved my life. I am 16 years old and have been suffering from headaches since I was 8. However, they increased in the last 3 months so tremendously that I was in so much pain...all I could do was try to stay in one position day and night:( school was in no way an option because the only thing I was able to focus on was the headaches. Without my mom's pressuring, the doctor would never have done the CT and later MRI to find out I had a 25 mm Chiair Malformation! Again, my mom saved me by not listening to all of the neurologist and neurosurgeons who didn't even know of the thing and said surgery wouldn't work and only handed me some pills, by taking me to Dr. Oro. It has only been 3 weeks and 5 days since my surgery...and I am doing better than I had been for the past 8 years:) also, Dr. Oro is amazing at only shaving a small amount of hair off, and already my scar is barely visible! If you need surgery, I would highly recommend him! I hope all goes well with you!

Julia's picture

What are essential head

What are essential head tremors....what do they feel like?

Jessica Wood's picture


I was diagnosed with ACM about a week ago after seeing multiple doctors who dismissed my symptoms (one Doctor even pointed at his forehead as to indicate that the symptoms were psychosomatic.) Here is something I found that I hope may be of help to some of you that are desperate for alternative options:

and here is my webpage

linda's picture

chiari help

the web page you posted is blank,ive been thriough all the same buul as everyone else 8 mm herniation ,all the saymptoms they can name i have i wok in a nursing home and had these symptoms arise after a realy bad week ,the worker comp doc the symptoms arent chiari the few sympoms they look for i didnt have so he said,,but he disregards the 30 others.he said you just have to deal with it. you dont want to loose your job now do you....what the hell is with this jerk...i will probably loose it antway if i go back feeling like thisheadaches are so bad,dizzy,memory loss,blurred vision,clumbsiness,weakness in my arm and leg ect.... love to see that page thanks linda

Mrs. Emily's picture

Arnold Chiari Physician

My Daughter was diagnosed with Arnold Chiari Malformation at 15 due to having persistent chronic headaches since she was very young and idiopathic Scoliosis (no family history of scoliosis). At that time the pediatrican at Rush Medical Center in Chicago informed me that 1=3% of cases of Idiopathic Scoliosis was due to Arnold Chiari malformation. Well she was in that percentage group! She was diagnosed, bracing was already initiated, and surgery was done due to fluid collecting in her spinal column due to the pressure building up. Well she was referred to neurosurgeon Dr. Lorenzo Munoz at Rush Medical Center in Chicago. He ws absolutely wonderful, and my daughter has been wonderful ever since. I'd highly recommend him! So competent!!! Give him a call for evaluation. You won't be disappointed. He was life changing, especially when I think of ll of the things that could have gone wrong. Hope this helps!

Serendip Visitor's picture

your daughter/neurosurgery

Hi Mrs. Emily, I cam across your comment from last fall regarding your daughter and her care at Rush. I live in Chicago and have some questions. Could you email me?

Tammy 's picture

Chiari Malformation

Hello everyone...My name is Tammy I live in Calgary Alberta Canada I have 3 children one which lives with me. I am so glad im not alone... I was diagnosed with Chiari 1 about 2 months ago. well from all my reading and talking to the surgeon it seems to be worse.... I can barely stand this any more the pain is unbearable.. and percocet does not work worth a beans..I have what i call episodes daily .. mostly from laughing sneezing yawning.. I also found out from the neurosurgeon here i have pockets of fluid build up going down my spine.. which is affecting my walking.. I can barely do anything any more without pain.. the surgeon figures i have had this for ten years or more.. which would explain alot. The symptoms are really bad now.. I have watched you tube videos and read lots... the one symptom i have i am not sure how to deal with hoping i can get some answers here. I am newly claustrophobic and can not handle the MRI machine.. I am due to go for another MRI Oct 11th. they are giving me atavan but not sure its going to help i have panic and anxiety attacks now.. which is really odd for me.. I do have the decompression surgery mid to end of Nov.After reading all these stories.... I do understand .. If there is anyone in Calgary please feel free to Email me.. I would like to organize a fund raiser when I have recovered from surgery.So anything i need to know before my surgery would be wonderful too ..thank you . If anyone knows how I can get some phamphlets also.. i will bring awareness to Calgary... No one knows the pain we deal with daily , they can try and understand but they dont know. ...please email me or comment and let me know ... thank you so much .. hugs and loves and prayers to all of you. And if I have seemed in anyway cranky at all I am sorry.

Serendip Visitor's picture

Calgary Chiari

Hello! I am so happy to find someone who has been diagnosed and lives in Canada. I found out in August and have had 3 MRI's done to confirm all tests...type 1 Chiari. I am waiting a neurosurgeon and was told it will take 18-24 months to even see one?!? I can't wait that long and put my life on hold from the neck pain, headaches and other symptoms. I would love to meet up and see how your surgery went, who your NS was in Calgary and see how you are now.

Please contact me as I would love to speak with you, and also get more awareness for others in this situation who arent diagnosed properly. I have fought with doctors for years.