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 ago....it 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

Comments

Serendip Visitor's picture

Over it

Hi,
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
904-296-2522
There are no Chiari NS experts in the area.
The only accredited Chiari expert in Florida is Barth Green at the University of
Miami.

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

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

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

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's picture

Kim, I am very sorry for what

Kim,

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

Sue Martin's picture

Chiari at St. Mikes

I had a decompression surgery at St. Mikes after having being diagnosed with chiari and a syrinx. That was just more than 10 years ago although Dr. Cusimano who was on the neurosurgery team is still there and is very highly regarded. I am visiting my neurologist tomorrow because of an increase in symptoms that are likely associated with this condition. The hospital is well placed for this surgery and only one of a couple of hospitals that I would even consider going to. For pediatric cases I would suggest Sick Kids Hospital in Toronto. If I can help or support you please let me know.

Serendip Visitor's picture

Nec k Manipulation

Be very careful about anyone touching your neck with
this condition. On two occasions, a massage therapist
and someone that does cranial sacral (sp?) work
made me worse temporarily but it was memorable.

Find other natural means. Google: WACM alleviation
methods, Vitamin C and by all means avoid gluten.
Try gluten free breads. An ice pack relieves
stress, inflammation.

Serendip Visitor's picture

I have been diagnosed with

I have been diagnosed with chiari and I had been seeing a chiropractor 3 days a week . my symptoms are horrible and I hav e anxiety problems which I have never had before. any suggestions

Serendip Visitor's picture

Chiropractor

I don't recommend chiropractors at all. Please be careful!

Venisha's picture

Reoccurance of Symptoms

After 4-5 years of headaches, muscle weakness, vertigo, dizziness, stiffness in neck, sensitivity to light, etc., my doctor finally sent me to get an MRI on January 15, 2009 and two days later I recieved a diagnosis of Chiari Malformation. The report stated that low lying cerebellar tonsils extending approximately 18-20 mm below a somewhat stenotic foramen magnum. On May 14, 2009, I had posterior fossa decompression surgery and have been symptom free until recently (last 3 months). Now, I am having some of the symptoms. Has anyone else had reoccurance of symptoms after surgery? Please share!

Venisha

Serendip Visitor's picture

I had surgery back on 8/2006

I had surgery back on 8/2006 for few years i been better but not 100% not is getting worse my right knee can keep balance I'm using knee bracelet to keep balance headaches never leaved me but getting worse the ringing in my ears is like everyday I'm getting worse. Anyone is having this problems .....HELP !!!

Lourdes's picture

Reoccurance

Hi Venisha, hope you're feeling better. It's only been 3 months since my posterior fossa decompression and have been experiencing most of the same symptoms from before the surgery. The headaches are a lot less painful but I still have muscle weakness, stiff neck and pain which radiates to my shoulders and down my arms. I would feel dizzy before the surgery but it's worse now. I get dizzy when I get up and start walking, when I turn my head while sitting, and even when I'm laying down. My doctor says it's not connected to the surgery and believes it may be an inner ear infection. My primary doctor diagnosed me with benign positional vertigo but I feel it's related to the CSF. I feel extremely frustrated I can't seem to get a straight answer. I know it's only been 3 months and I haven't healed completely but I need to go back to work and have no idea how I'm going to manage working when I don't have the energy to make it through a few hours of running errands. I get tired very easily and by the time I get home I'm in pain from the neck down. Have your symptoms gotten better and if so what helped?

Lourdes

Serendip Visitor's picture

Melissa, I am very sorry for

Melissa,
I am very sorry for your complications and know them only too well.
For immediate relief try a grainfree diet for just one day to see
improvement in pain.
For further reference go to Dr.Jack Kruse's website and search
Chiari I Malformation and it will take you to "Do you have a grain
brain"
Dr. Kruse is a neurosurgeon who thinks outside the box.
Good luck............

Serendip Visitor's picture

Grain free diet

I have found a grain free diet helps with
managing symptoms of Chiari I
Malformation without being on
narcotic type pain killers.

Serendip Visitor's picture

Grain Free Diet

Hi Everyone,
I don't know if this will help you but I've found I can relieve
the symptoms of Chiari I via natural means without heavy
duty pain killers.

First I went gluten free but that was not enough. Going
grain free does alleviate symptoms. I must admit I do
have some corn and potatoes.

There is a book that gives bakery recipes using nut flours
called "Breaking the Viscious Cycle" by Elaine Gottshall.
Gut health directly related to brain health.

I hope this helps someone else,
Lynn M.

heidi hale's picture

I wanted to know if chiari

I wanted to know if chiari type 1 can be caused from trauma like 2 car accidents for I never had pain like this before till I was in 2 car accidents. Now recent mri after all mri's being clean following accidents show 7mm and now this diagnosis. Can they be related or is this something that was going to happen to me regardless?

Serendip Visitor's picture

Arachnoiditis from trama or ANY invasion of the spine(dura)

My name is Tahnee I have Chiari found out this year, but I also have Arachnoiditis from an epidural during a c-section for child birth in 2009. It took me 3 years for my pain to get worse and worse. Was lied to and told pain after the epidural would go away in a year, it only got worse. I have since meant 10,000's of people that have Arachnoiditis a undocumented, unrecognized serious medical condition caused by a vase array from natural to man made side effects from procedures, 90% of people that have Arachnoiditis have it from medical procedures many are made worse with more invasions of the spinal cord (i.e epidurals, nerve blocks and surgeries). How can one get ARC/ARAC (arachnoiditis), from trauma to the spine, epidurals, spinal blood patches, meningitis, spinal surgery's, spinal stenosis, nerve blocks, Multiple lumbar punctures, subarachnoid hemorrhage and more. Any invasion to the spine can cause arachnoiditis. Thats right ANY.
The symptoms of Arachnoiditis are pain, mild to severe headaches, numbness, tingling, vision disturbances, dizziness, nausea, vomiting, weakness, paralysis, loss of sensation in legs, loss of leg movement, muscle wasting, bladder, bowel and sexual dysfunction and uncontrollable twitching. Arachnoiditis Syndrome Sufferers may present with various combinations of back, buttock and leg pain, numbness, muscle weakness and often widespread “Dysaesthaesia”. This takes the form of diffuse often intense pain across the back, spreading up to the thoracic spine, down to involve the sacrum and coccyx, deeply in to the pelvis or perineum and extensively down one or both legs. The symptoms may present as pins and needles, cold or scalding water or a sense of ants crawling up and down the body in these territories.
Okay, arachnoiditis is bad—but what exactly is it?

Caused by foreign substances (blood is foreign to the spinal canal) entering, or damage to, the spinal canal, arachnoiditis starts as a massive inflammation of nerve roots and the arachnoid, one of the three meninges (membranes) that surround the central nervous system. This is where the disease's funny name comes from: arachnoid for the name of the membrane initially inflamed and -itis for "inflammation of". The inflammation is chronic. It literally never ends and produces constant burning pain in the spine. This, though, is only a partial description of the damage done.

Scar tissue grows in the cerebrospinal fluid, which then impinges on nerves, even choking them completely. It pushes nerve roots aside and can ultimately fill an entire area of the spinal canal. This causes a multitude of symptoms, which can affect any area of the body. Any organ can be affected. If the nerve root that supplies an organ is damaged, then that organ malfunctions.
What are the odds of getting arachnoiditis? That's a very good question. It seems that no one keeps records on it. Doctors avoid diagnosing it, often using clever terms, like Failed Back Surgery Syndrome, Nerve root damage, Clumped nerve roots, which gives the impression that the surgery simply wasn't successful. This often hides the fact that the patient was left with a completely new and incurable condition.

Diagnosis, which can usually be done quite easily via MRI, is often evaded with terms that describe the disease, such as fibrosis or nerve root clumping, but fail to use the term arachnoiditis itself.

There are no statistics on arachnoiditis patients. Those with the disease often feel like they are the medical system's deepest, darkest secret. All too often, they are treated accordingly. A look at some online support groups will quickly show the utter lack of support that many, if not most, of these patients receive, from evasiveness to outright lies about whether they have the condition. They are often not told for years, if at all, that they have the disease.
The majority of cases today appear to be caused by spine surgeries and epidurals. According to a report in PubMed, as many as 40% of all back surgeries result in Failed Back Surgery Syndrome. Different reports from the medical system offer numbers ranging from 10% to 40%. How many of these cases are actually arachnoiditis is unknown, but that is only because the medical system does not keep records. They appear to avoid knowing. One brave doctor, Antonio Aldrete, who has dedicated his practice to victims of arachnoiditis, estimates that up to 25% of back surgeries result in Failed Back Surgery Syndrome.

Even if the number is the lowest estimated, it means that well over 50,000 cases of Failed Back Surgery Syndrome are created every year: 10% of more than half a million back surgeries, as reported by the American Association of Neurological Surgeons in 2002.
Is this an extreme case? Who knows? The medical system refuses to do studies or cooperate in any way with finding out the extent of the disease—though doctors continue to say that it's so rare, it's not worth considering. But what are they basing this statement on?
http://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis?page=0,1

Serendip Visitor's picture

chiari mallformation and car accidents

Can you tell me the status of where you are on this? I know someone with a similar experience.

Millie's picture

Chiari malformation

My status is still the same. Medication not working for me . My doctor keep telling me its chronic migraine.

Tammy Montgomery's picture

Chiari I and back surgery?

Hello, I have been diagnosed for 10 years . My herniation is near the c1 level. I also have a severe disc herniation at the c4 level, a bulging disk at c5 and 6 and three bulging discs at s1, L4-5. I need surgery for my neck and was wondering if anyone has had any experience with Chiari and spinal surgery? Thank you so much.

Kim's picture

Chiari 1 malformations with spinal degeneration and syrinx

Hi I so not know if you have already had surgery I have recently undergone a craniotomy or foramen magnum decompression surgery. I had a 9mm herniation and a thoracic syrinx. My op was to prevent paralysis and I was not guaranteed a relief from the symptoms. The symptoms are hard enough and vary depending on the day I'm having but I struggle on and I still work full time.

The surgery now this is the difficult bit I was very calm and collected and ready for what lay ahead I very much believe in what's meant to be is meant to be I woke up from surgery in severe pain the ICU nurse kindly kept injecting morphine which provided no relief. I was taken to my room and tried to eat I was sick. I asked family to take me for a cigarette in a wheelchair before leaving me to sleep. The morning after the real pain kicked in I couldn't move my neck or head and again was given morphine an hour after it was given I was in the worst pain id ever felt beware of that drug it's side effects are increased cranial pressure and headaches !!! I was then left only with paracetamol and codeine 3 days without sleep I was given diazepam and discharged home 3 days post op. Although the pain was extremely bad I was walking around the day after surgery. Two weeks post op now and the pain has eased massively the sickness hurts as the heaving motion hurts like hell so does sneezing I actually screamed when I sneezed.

I had part of my skull removed I also had my C1 vertebrae removed and the dura was also removed an replaced with a patch. Post op the patch leaked and small amounts of spinal fluid was leaking from the incision. I went back to the hospital who threatened a 2nd op although I managed to convince them not to I had extra stitches put in to try and hold it in. It's not over though eventually the patch will fail and the fluid will build up. But I've survived this once and I will do it again.

My advice to anyone having to undergo this surgery accept what is to come before you go in mentally prepare for what the outcome may be and stay strong only sheer strength and determination will pull you through and finally be prepared for the help you will need with the little things like showering getting in and out of the bath even putting underwear and socks on was an issue for me. My symptoms are not cured some have worsened I had some problems swallowing but that is now worse. Balance is also more of an issue now but I dot care as long as I can walk I'm happy.

Good luck to everyone having this operation

Serendip Visitor's picture

chiari surgery

Hi,
Hope you frgeoneel better soon. I had surgery in 2010 for Chiari type 1/2. My symptoms pre op were awful. Most people thought that I was suffering from depressio, attention grabbing......you name it, I had it, until I was diagnosed by RMI. The surgery was very uncomfortable and a bit scary but the hospital staff were great. It took me a few months to recover completely and I still have minor symptoms such as loss of sensation in my hands and feet but I function normally. I no longer have the crippling headaches, dizziness, difficulty swallowing and other hanicapping symptoms.
Since surgery my life has changed. I feel GOOOOOD for the first time in 20 years. If you have a good surgeon in who you feel confident I would say go for it. Chiari is so badly understood by society and if you have the oppurtunity to have a pain free life then you should really consider having surgery.
I hope it goes as well for you as it has for me but there is no reason why it wouldnt.
Good luck, Kate

Lynn M.'s picture

Kelly, I am very sorry to

Kelly,
I am very sorry to learn of your complications and know only
too well your symptoms. I "manage" my symptoms through
natural means. Here they are:
* Be sure to drink plenty of water
* Physical therapy can alleviate pain and balance
problems, IF you are stable.
* A massage type pad (you can purchase) and put on a chair
alleviates pain/stiffness.
* Some type of limited mild physical exercises alleviates symptoms.
I only do when I have enough energy for 15-20 minutes.

I hope this helps you, Kelly.

Lynn M.

Kristin soto's picture

Acm

I woke up paralyzed from the t4 down in jan 2010 .. I had a syringomyelie on my t4 with a syrinx.after two years of pt I can walk again and after a multitude of tests they finally found a 5mm protrusion leading to my pos.diagnosis of acm 1. I am now pregnant and terrified of the complications Might face. I can't function without pain meds and although the docs try to reassure me that they are safer for the baby then the high blood pressure assc with my extreme pain I'm still scared. I had two children prior about ten years ago without comp. the drs want to do a csection which also scares me because they will put me completely under due to my spinal cord injury. I'm scared and worried is there anyone out there who can offer sum encouragement or experience? I have not had the corrective surgery yet.

Amba harry's picture

Hi I was just reading your

Hi I was just reading your post I have just had a baby under general anesaestic I have acm1 and have not yet had decompression surgery I was diagnosed on 2010 and have had severe symptoms ever since,I've just had an appointment through to meet with my surgeon again which I'm terrified about,I've been through so much the past 9 months through the pregnancy and trying to cope with my chiari aswell it was really hard but my baby was born healthy at 38 weeks, which is a blessing as I took loads of medication for my head throughout the pregnancy I'm finding it hard now that I have a newborn and I have two other children and I'm trying to deal with my head so things aren't easy but I had a healthy baby and being put under wasn't as bad as I was expecting!

Kevin mason's picture

Chiari one

About a year ago I started getting bad headaches off and on. This continued thru the summer and I had talked to my Dr and they said possibly it was work related stress. I didn't agree with this. In late Nov. I went back to the Dr. and told them I felt like I was falling apart. During the last 5 or 6 months I also felt totally drained after my work schedule, which was 2 weeks of 12 hr shifts @ a remote site, then 2 weeks off. In Dec I got a chest cold while @ work and when I would cough it felt like the top of my head was going to blow off. In Jan I went to Emerg for hrs and wasn't leaving until I got a catscan. After the scan the hospital called me to have 2 follow up MRIs and Chiari one was diagnosed with 19mm. I also had balance issues, hoarsness, trouble breathing, swallowing issues with everything,as well as many other ones. In May/12 I've had my surgery with the removal of a piece of the base of my skull as well as removal of my C1 vertabrate. It has been a couple of trying weeks but I believe that some of my symptoms are subsiding. Having the surgery or not is an individuals choice. Being informed and having a knowledeable Neurosurgeon has well as the support of family and friends is very important. Good luck to all that face this. Stay Strong!!!!!!!!

Serendip Visitor's picture

Surgical Procedures

Many thanks for your indepth reply.
I will definitely keep this for future reference.

The trick is avoiding surgery if at all possible.
Too many complications.

Thank you,
Lynn

Jimmie O. Conover's picture

It depends which procedure

It depends which procedure you are having. There is a minimally invasive endoscopic transnasal procedure that can be done in some cases.

Posterior fossa decompression surgery is performed on adults with CM to create more space for the cerebellum and to relieve pressure on the spinal column. Surgery involves making an incision at the back of the head and removing a small portion of the bottom of the skull (and sometimes part of the spinal column) to correct the irregular bony structure. The neurosurgeon may use a procedure called electrocautery to shrink the cerebellar tonsils. This surgical technique involves destroying tissue with high-frequency electrical currents.

A related procedure, called a spinal laminectomy, involves the surgical removal of part of the arched, bony roof of the spinal canal (the lamina) to increase the size of the spinal canal and relieve pressure on the spinal cord and nerve roots.

The surgeon may also make an incision in the dura (the covering of the brain) to examine the brain and spinal cord. Additional tissue may be added to the dura to create more space for the flow of CSF.

Regards,
Jimmie O. Conover
Tampa personal injury lawyer

Serendip Visitor's picture

Ouch Dura No NO zone!

My name is Tahnee I have Chiari found out this year, but I also have Arachnoiditis from an epidural during a c-section for child birth in 2009, diagnosed in 2012. That is why, I will not allow decompression unless life or death. It took me 3 years for my pain to get worse and worse after epidural. Was lied to and told pain after the epidural would go away in a year, it only got worse. Even moving 300 miles away back home my MRI was doctored to hide ARC. My entire medical record for anesthesiology is "Missing", after they poked me over 25 times. I have since meant 10,000's of people that have Arachnoiditis a undocumented, unrecognized serious medical condition caused by a vase array from natural to man made side effects from procedures, 90% of people that have Arachnoiditis have it from medical procedures many are made worse with more invasions of the spinal cord (i.e epidurals, nerve blocks and surgeries). How can one get ARC/ARAC (arachnoiditis), from trauma to the spine, epidurals, spinal blood patches, meningitis, spinal surgery's, spinal stenosis, nerve blocks, Multiple lumbar punctures, subarachnoid hemorrhage and more. Any invasion to the spine can cause arachnoiditis. Thats right ANY.
The symptoms of Arachnoiditis are pain, mild to severe headaches, numbness, tingling, vision disturbances, dizziness, nausea, vomiting, weakness, paralysis, loss of sensation in legs, loss of leg movement, muscle wasting, bladder, bowel and sexual dysfunction and uncontrollable twitching. Arachnoiditis Syndrome Sufferers may present with various combinations of back, buttock and leg pain, numbness, muscle weakness and often widespread “Dysaesthaesia”. This takes the form of diffuse often intense pain across the back, spreading up to the thoracic spine, down to involve the sacrum and coccyx, deeply in to the pelvis or perineum and extensively down one or both legs. The symptoms may present as pins and needles, cold or scalding water or a sense of ants crawling up and down the body in these territories.
Okay, arachnoiditis is bad—but what exactly is it?

Caused by foreign substances (blood is foreign to the spinal canal) entering, or damage to, the spinal canal, arachnoiditis starts as a massive inflammation of nerve roots and the arachnoid, one of the three meninges (membranes) that surround the central nervous system. This is where the disease's funny name comes from: arachnoid for the name of the membrane initially inflamed and -itis for "inflammation of". The inflammation is chronic. It literally never ends and produces constant burning pain in the spine. This, though, is only a partial description of the damage done.

Scar tissue grows in the cerebrospinal fluid, which then impinges on nerves, even choking them completely.(for many can years to slowly progress, leaving doctors not linking cause and effect) It pushes nerve roots aside and can ultimately fill an entire area of the spinal canal. This causes a multitude of symptoms, which can affect any area of the body. Any organ can be affected. If the nerve root that supplies an organ is damaged, then that organ malfunctions.
What are the odds of getting arachnoiditis? That's a very good question. It seems that NO ONE keeps records on it. Doctors avoid diagnosing it, often using clever terms, like Failed Back Surgery Syndrome, Nerve root damage, Clumped nerve roots, which gives the impression that the surgery simply wasn't successful. This often hides the fact that the patient was left with a completely new and incurable condition.

Diagnosis, which can usually be done quite easily via MRI, is often evaded with terms that describe the disease, such as fibrosis or nerve root clumping, but fail to use the term arachnoiditis itself. Diagnosis can ultimately be mislead or missed for fear of repercussions or lack of training to recognize.

There are no statistics on arachnoiditis patients. Those with the disease often feel like they are the medical system's deepest, darkest secret. All too often, they are treated accordingly. A look at some online support groups will quickly show the utter lack of support that many, if not most, of these patients receive, from evasiveness to outright lies about whether they have the condition. They are often not told for years, if at all, that they have the disease.
The majority of cases today appear to be caused by spine surgeries and epidurals. According to a report in PubMed, as many as 40% of all back surgeries result in Failed Back Surgery Syndrome. Different reports from the medical system offer numbers ranging from 10% to 40%. How many of these cases are actually arachnoiditis is unknown, but that is only because the medical system does not keep records. They appear to avoid knowing. One brave doctor, Antonio Aldrete, who has dedicated his practice to victims of arachnoiditis, estimates that up to 25% of back surgeries result in Failed Back Surgery Syndrome.

Even if the number is the lowest estimated, it means that well over 50,000 cases of Failed Back Surgery Syndrome are created every year: 10% of more than half a million back surgeries, as reported by the American Association of Neurological Surgeons in 2002.
Is this an extreme case? Who knows? The medical system refuses to do studies or cooperate in any way with finding out the extent of the disease—though doctors continue to say that it's so rare, it's not worth considering. But what are they basing this statement on?
http://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis?page=0,1

Lisa 's picture

Return of symptoms and Chiari

Hi. My name is Lisa and I was diagnosed with Chiari 1 in 1998, after the birth of my second son. By 2003 it had grown to 8mm, on St. Patrick's Day of that year I was rushed to the hospital because I was walking into walls and was seeing double, mind you I had a 3rd son by now who was 2 years old. I was very sick had decompression surgery, had spinal meningitis a week after I was home, very sick again, and for the following year I was miserable, headaches Pain meds, dr's though I was crazy. I have been okay for 9 years, the symptoms started again. It worse, double vision
Vertigo headaches migraines, losing feeling in Arms and hands, incontiinence, I had an MRI and it said that I have a 3mm Chiari ectopia. I live in Chicago and I am seeing a Neurosurgeon at Rush tomorrow, I'm just trying to find ANYBODY who has been thru this or something similar or has had multiple surgeries, I also have bulging disc's right below the decompression. I just turned 42, I want to be a mom again not so
Someone who is always sick and on meds - just wanted to see if any of you had this happen to you- thanks so much. Lisa

Hi my name is kelly's picture

had acm surgery 9 years ago also

I had surgery 9 years ago as well. My sysmtom are worst then before really bad vision, balance (i use to beable to flip and do cheerleading and gymnastics) my headache are worst than ever before, walking into walls, hard time seeing when driving, reading, and many other sysmptoms like memory and aving a hard time coming up with the right words to say or stopping in middle of sentence or starting in the middle of sentences. I have been going for oppciptal, neck and spinal c1 and c2-3 blocks at fist work for a few weeks now not working at all. I do get my children everywhere they need to go 13yrs and 15 yrs but at the end, once home that is all i can stand. i dont like taking pain medication due to addcition of alcohol in my family(i do not drink at all) i never thought it could come back, but heading to my neurosuregon again to have mri with cine to fnd out whats going on. Put I feel for you and know how yo feel when they say its all in your head there is nothing wrong (including my husband). If you have any suggestions for me please write back. I will be prayin for you.

Serendip Visitor's picture

Canadian Dr's

This is at Jacquie from Calgary. Dr Kassam is a brilliant Neurosurgeon in Ottawa, Canada. Just wanted to let you know.

Cheryl's picture

Hi Jacquie, I was just dx in

Hi Jacquie, I was just dx in June and live in Calgary and waiting to see neurosurgeon. Did you see any in Calgary or did they refer you to Ottawa? I'm curious what your experience has been here and how you're doing after seeing dr in Ottawa

Serendip Visitor's picture

Calgary

Hi Jacquie and Cheryl. I was diagnosed with ACM I and have had three surgeries. I had two with dr Hamilton in Calgary and he is at the foothills medical centre. I can't say I am perfect, I am still having symptoms....headaches, dizziness, numbness and such, but despite this, I had lived the best years of my 45 yrs between 2003 and 2010 ( after first decompression). I would take that any day. Chiari is very complex and the brain is the least understood part of our bodies...until they find a good "cure" for us Chiarians, well, I will keep on trying to look for remedies to alleviate my symptoms. :) have a great day

Leland Brown's picture

What's normal now?

I had Surgery in 2010 for a Chari 1 malformation. Recovery was okay and i'm alright now... but i do have a question: sometimes when i move neck it cracks and grates, like something grinding against the bones. And recently, like right before i typed this up, i had a crack in my neck, then pain shoot through the left side of my head. I don't know if that's normal or not, and i just wanted to know if anyone has any idea as to what is normal after the surgery... thanks.
Leland

melissa's picture

I have been diagnosed for 20

I have been diagnosed for 20 years n had the surgery 2 1/2 years ago followed by an infection followed by the surgery again. I was never better till I fell 40 ft. (Classic cartoon fall) n landed right on my head. My symptoms returned with a vengeance!!! I have been treated Luke I'm nuts n kicked while down by dr's so much I refuse. To c a Dr. I have complications from scar tissue, bone fragments, n spinal fluid leaks to an aneurysm! I live each n every day in massive pain with nothing more than over the counter aide! I do this because if go to the Dr. 1 more time n get no results I'll need the nut house!! LOL wow that really got away from me. Yes I to have that pop followed by burning stabbing pain.its terrible, crippling pain!

Serendip Visitor   michelle's picture

is it back?

I first would like to say this blog came as a god send to me .I have a 16 yr daughter that was dx with ACM1 at 14 after having a seizure "out of the blue "She then had decompression within a few months of dx.For awhile she seemed to be doing better then the "episodes" started .typically early morning we would find her face down on the floor ,unable to wake her .she would sleep for hours and then have no recollection of the event.Our neurologist felt they were seizure activity ,even though EEG was inconclusive.,so every time it happenend her Topamax was increased.We finally took her off Topamax because it wasnt working ,and we felt like she was in a constant daze !the drop attacks stopped ,and basically her daily headaches were managable at a 4-5.Within the last 2 weeks she has experienced her anterior thighs going numb.She reports not being able to feel her legs and that the muscles feel like they are being pulled tight.when the numbness goes away they feel like jello and she struggles to walk.Prior to this she was having severe abd pain ,which of course several trips to the ED found nothing,until finally we took her to an OBGYN who did laproscopic surgery finding ALLEN MASTERS SYNDROME. She cried the other night stating "i just want to be normal I am tired of feeling sick" I HAVE TO FIND HER THE HELP SHE NEEDS, She dosent believe Dr can help her anymore,and I am frustrated when they tell me "the decompression is fixed so it cant be the Chiari " Well then what the hell is it ? As I read this blog I see so many of you with similar symptoms ,who all have ACM, surgery or not .My daughter is an athelete that I am slowly watching dwindle away.I have not taken her to the chiari institute yet ,but feel like that is my next step.I also want her to be able to talk to someone her own age who understands . .Thankyou for sharing this part of your life .I am so sorry for all of you who live with this pain daily .ACM SURVIVORS YOU ARE MY HERO AS YOU ENDURE TO THE END .....

Serendip Visitor's picture

13 year old daughter

Hi Serendip,

Sure hope your still here, my daughter was just diagnosed and feels so alone...i feel alone and scared for her...we would like to talk to you and your daughter if you want

Serendip Visitor's picture

northeast dr recommendation

Hi. I would like to recommend a doctor in Central New Jersey. Hs name is Dr. Steineke, and he works out of The Neuroscience Institute at John F Keneedy Medical Center in Edison, NJ. My daughter had her decompression surgery during the summer of 2012. We had seen 3 neurosurgeons, and found Dr. Steineke to have the most experience and a very nice bedside manner, which is so important when you are so nervous about what is happeneing to your child (or yourself). She is not even a year post decompression, so I can't say what she will be like in terms of any return of symptoms. What I can say is that the doctor is very knowledgable in Chiari and was able to answer all of my questions. It makes me feel so bad to read how doctors are ignoring your symptoms. After my daughter's surgery, she was such a different child! She is happier and has a freedom of movement that she never had before. All we can think about was how bad she must have felt before surgery, and how it had affected somany areas of her life that none of us, including my daughter, had realized.
I wish you all well. Please consider calling Dr. Steineke. Even if he is not that close to where you are, it may be worth a trip. When my daughter was first diagnosed, we always thought that we would have to travel to Chicago or Long Island for her surgery. I believe that, if you can mangae the time and cost, it will be worth the trip to New Jersey to see him.

Millie's picture

Acm1

Hello I two had surgery Sept 19 2008, Dr. Steineke also did my surgery, he is a great NS and great bedside manner. I had seen other NS but like Dr. Steineke better. But right after recovery my symptoms return, headache, vision, balance, numbness in arm, neck pain and stiffness, I past out without warning. I been told by Dr. Steineke and other dr. The surgery been a success nothing is wrong. MRI ans EEG come back normal. All these dr. wants is to put me on medication that knock me out or don't work. When med don't work my dr. Tells me it works on my other patience. I tell him so what it don't work for me. I been living with chronic pain and its nothing these dr. Are able to do for me.

Tyler 's picture

dear Michelle

Hey Michelle I am a 14 year old who was just diagnosed with acm I I was looking all over Google to see if I was going to be alright I was scared out of my mind and im really nervous about this aswell

Sherri 's picture

to Michelle

I am so sorry to hear your daughter is going through this - it is horrible to see your child in pain, or watch as the activity they have a passion for slip away.
My son is now 18, had decompression of 17 mm ACM at age 15. Initially he seemed to do well, the neurosurgeon assured us it was "fixed". He also said this to our primary doctor - my son was a wrestler at the time he was diagnosed and had to end his season. We were told he could return to it after the surgery. Despite my apprehensions, the doctors said it was fixed so I let him wrestle again. He went to a 3 day camp - he didn't make it through the first day. He was having shock like numbness and tingling, and a bad headache. There went the season. He had a spinal to check pressure, but they didn't have lay flat long enough and he developed a horrific headache every time he was upright for more than 10 minutes. He tried to go school but was vomitting from the pain. Children's ER sent him home saying it was a "migraine". Put him on a Topamax cocktail - which helped at first. His symptoms were better for awhile,but off and on problems. Again, every single time we took it to the doctors, it was "not from the chiari, that was fixed". We were basically looked at as hypochondriacs at times with no improvement, other than his symptoms fluctuating. Last month, he was at work and called me to come pick him up, he had recently been having problems with severe pressure in the back of his neck and head, balance problems, but at this point it grew worse. When I picked him up, he was having trouble finding words, slow responses to questions, speech was very slow, "out of it", felt like he wasn't walking right etc.... took him to what is considered one of the best hospitals in the area, teaching hospital etc.. they said "migraines" and sent us home with Topamax prescription which I tossed out. They could not even SPELL Chiari, did not really know what it was. I started the neurosurgeon search again - THANKFULLY we have answers, although we could have hoped for better news. What we have is a failed Chiari surgery. We KNEW it was Chiari - the neuro specializes in Chiari and belives it may be scar tissue from the original surgery. He will be doing full head and neck MRI soon, is wearing a cervical collar starting tomorrow 24/7. To determine, after scan, if it is scar tissue, they will have to re operate to try to remove it. He is currently a weightlifter and cannot lift until this is resolved.
I hate it when doctors assume it has been "FIXED" - they rule it out automatically without considering it even. Or label it something else. KEEP SEARCHING AND PUSHING FOR ANSWERS - it is a long battel, but worth it in the end. It is my understanding that Chiari institute (NY) doesn't bill your insurance company - so definately check that, although I could be misunderstanding that. There are many other specialists in this area, you may want to try tome of the university hospitals or teaching hospitals, pediatric specialists etc, whatever you have access to. I know this is long, but my heart goes out to you and your daughter. Especially when they are athletes and can no longer participate - or any activities that are so important to children. Good luck to you!

Lynn M.'s picture

I am sorry to hear of your

I am sorry to hear of your son's difficulties.
I do believe there is a link between food sensitivities
and aggravation of acm. It appears to cause more
inflammation and that's what we are trying to keep
to a minimum.

Lynn

natasha's picture

gluten free

Sorry forgot to say is there a known link between acm and celiac disease

natasha's picture

my son diagnoised at 2 years old

Hi my son has acm and was operated on at 2 1/2 to remove tumors from his spine. He suffers what he calls funny eye and pins and needles in his wrist. He is now 8 yrs oldand recently had another tumor removed from his head. No known link 2 his tumors or his acm. My question is he has now been diagnosed with lactose and fructose intolerence. Is there a known link between this and the acm. Also my brother has always had an odd shaped; bone structure; head and he has scoliosis. Do u think my brother and son have a hereditry link. Thanks in advance 4 your opinions. Tash and her son :-)

Lynn M.'s picture

Anti-inflammation Diet

There seems to be a connection between
inflammation and Chiari. Follow an
anti-inflammation diet, ie lots of fruits and
veges to keep down inflammation.

Lynn

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