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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


marc's picture

some nuerosurgeons full of bs

Hello my name is marc a 36 yr old male,5 years ago i started having severe headaches!went to er twice only for them to give me a shot and a ct scan and send me home.after having same headache for 3 weeks i went to my reg doctor who told me i probably had a virus since er ct came back clear and sent me home with vicodin!after three 3 more weeks of severe neck and head pain off to nueroligist and diagnosed with cluster migrans.After trying migrane meds my ins did not cover at between 100 and 200 a piece we settled on more vicodin!started to have severe pain in different parts of my body,which changed all the time!was refered to pain management clinic where they began injections in spine and lower back which all 5 attempts were failed attempts!then in nov-07 sent to nuerosurgeon who sent me for a mri of head!Told me i had chiari malformation that was only 3.5 mm down onto and around my spine.that was not enough to cause my symptoms and sent me back to pain clinic for a nerve block to the head!i called my reg doctor told him to find me someone that could help me.He referred me to Loyola medical university in Chicago!I took him the copy of that same mri,he asked me if it was ok to dictate while his nurse was there to!He pointed out the chiari explained it and told me his nurse would schedule craniatomy decompression surgury!my surgury was on 2-28-08,it lasted 4 hours and my spinal fluid was almost 100% blocked! i came home on3-4-08 and already feel better than before i went in!I still have quite abit of recovery.I will not lie to anyone,the first night and first day after are very tough i mean very painfull!However each day after that becomes better and better!mostly to get home to your own bed and home!sorry to bore u but thats my story!so my advice is go to a university hospital early on and save yourself the 3-5 years of bullsh**!and according to my surgeon you can be severly blocked at 1 or 2 mm.god bless to all and there is hope its just getting there thats tough!

Lita Tomas's picture

Neurosurgeons lack of understanding

I totally agree with you Mark! My daughter was injured during her Officer Basic Course, the Neurosurg at the VA hospital refuse to admit there is still a problem, we are getting 2 outside opinions to bring as evidence to get the Govt to pay for the needed surgery. It's almost a crime.

Anonymous's picture


what university hosital?what was your surgeons name?i am 27 years old and i need help

mom of injury activated chiari daughter's picture

Agree with Universities as the best way to seek treatment

My daughter was a 30 yr old gung-ho Army Officer injured in a training accident (fell on her head & neck) Instantly she had every typical chiari symptom, but no one recognized it at first. It took a MD at the Uof Chicago Hospital to get her into surgery. The results haven't been as dramatic as we would have liked, but she did get some relief, is continuing to get therapy at Hines VA (right next door to Loyola!) If you need a penpal to discuss scars & aches, she's in your neighborhood, feel free to drop a line!

Best of luck to you...

Anonymous's picture

Chiari in the Military

I was wondering if your daughter had surgery or stayed in the Military. I too am an officer in the Army. I began experiencing a wide variety of severe symptoms following a short 4mile ruck run. I was diagnosed with a 13 mm herniation about 2 months later. The army doctors have told me a variety of things ranging from "it is no big deal", "chiari doesn't cause symptoms", to "you need surgery", and "it is a simple surgery" and "you will be back to full duty in 1 month" Can your experience with your daughter allow you to address any of this? My gut says that I need surgery because they symptoms are terrible but my brain says these army doctors just want to notch their belt with an unusual surgery despite their clear lack of knowledge. Unfortunately, I'm being told I must have a military surgeon perform this surgery since I am still on active duty.

Visitor's picture

I was doing a bit of googling

I was doing a bit of googling and was surprised to find other Army officers who have dealt with this! I feel like I'm lucky because I was diagnosed right away after my symptoms started to appear (which was also soon after a training accident where I fell on my head, in full battle rattle). It was very obvious on my MRI.

I'm having decompression surgery in a few weeks at Ft. Sam Houston. The neurosurgeon there actually trained with one of the top chiari specialists, so I'm pretty comfortable with him. Still really scared, though.

From the other military officers who have dealt with this, did you manage to stay in? If so, what kind of limitations did you have?

Lita Tomas's picture

don't let them tell you "chiari doesn't cause those symptoms"

Hi! Please drop us an email through aol...or call? We would be glad to discuss the 9 years of trials getting the Armed Services and now the VA to work with Jean on her Chiari (no symptoms before the training accident).

Look forward to sharing any and all info we have

Lita Tomas

Anonymous's picture

chiari malformation

I read your story and was touched. Can you please give me the name of your doctor from Loyola University?
Recently, I was diagnosed with Chiari Malformation and I feel alone in this journey because nobody seems to know enough about this condition. The doctors I've dealt with are not giving me the answers I need to understand this condition.
Therefore, I spend time online to make sense of what I'm going through.

Thank You.

Landeez's picture

chiari Malformation

Please, Please , don"t feel alone! I did at one point myself,feel alone, but with these web-sites, and surgery, I have done so much better! I had My surgery in 2006 and was at first very scared about the outcome. but with time and patience, I Have been doing 100% better! Family and friends Have been the most postive influence in my life, and my faith in God. The Neuerosurgeon I went to is doctor Morgan At Renown Medical Center In Reno, Nevada. Please have faith, and you will get through this, We DO know what you are going through! take care and good luck, and God bless you!

Anonymous's picture

Arnold Chiari Malformation

I am about to have the surgery for this and my Dr. Morgan I have to admit I am a little scared to have it done but not wanting the migranes I will be having mine done @ Renown Medical in Reno as well any helpful thoughts?? I do put my faith in God's hands but this surgery has me a little on the edge of anxiety. So any helpful thoughts would be grateful.

Melissa's picture

Loyola Dr.

I see Dr. Anderson at Loyola University. He is wonderful! after dozens of doctors with no answers who just kept drugging me up on barbituates, he diagnosed the chiari. it's been under control with diamox and getting off depo provera, but returned three weeks ago after a fall with a serious injury to my eye. he is doing another mri in 4 weeks with another consult and talked to me today about the real possibility of the decompression surgery if the meds can't get it under control again this time. i am herniated just 5mm.

bobbie's picture


Did you have the surgery? If so which dr?

Lynne's picture


Boy, are you ever right, about going to not only university hospitals, but also to neurosurgeons who have had university experience, as we did !!!
Our surgery went wonderfully ...
Take care,