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

Jessica Wood's picture

ACM

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?
Thanks,
Gillian

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 it.am 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 much...as 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.

Cheers,

Marlene's picture

surgery in Ohio or Pa

Anyone have surgery at the Cleveland Clinic or UPMC for Arnold Chiari?

buddy fed's picture

UPMC

Had CM1 operation at presby hospital in Pittsburgh in Aug of 09,, two weeks later developed menitigitis,, spinal fluid coming out of my neck, had revision surgery two days later, has never been right since,, now losing control over everything,, cant walk, serious problems when standingup,, I give up,, I let these basterds cut me up, now I am not takken seriously with all my symptoms

tina's picture

I had surgery in 2002 at

I had surgery in 2002 at Hillcrest hospital. Surgeon was Theresa Ruch. Amazing doctor.

Lisa hasenflu's picture

OHIO or PA

I had surgery at the Cleveland clinic in 1984 and they were amazing.. The only hospital that correctly diagnosed me.

Serendip Visitor's picture

type 1 arnold chiari malformation

Six days ago I was sitting in my car waiting on my kids to come out the house so I could take them to get something to eat. As I sat there I felt my whole left side of my body go numb and feel kind of heavy. My speech started slurring and I couldn't remember certain things. I went to the hospital and they ran all kinds of test, at first they thought I had a stroke so they kept me in the hospital for two days. Just as I was about to be released a doctor came in and told me I had type 1 arnold chiari malformation and to look up the information online at medical websites. Well that really scared me what I had read. I not sure will I have to live in pain for the rest of my life or the scary surgery would help. Will I be able to work and take care of my kids? Will I be on medication for the rest of my life. Are there a lot of doctors around that have treated this situation and know what I am going through with the pain because the doctors where I live at don't understand. I feel like they think the pain is all made up in my head.

Monika's picture

I was diagnosed with an ACM

I was diagnosed with an ACM in 2002. I had been going to the doctor for years begging for help with my "weird" headaches. I was about to go on a trip with a coworker, when he refused until I went to the dr because I was losing my mortor skills. Oddly, I went to an internal medicine dr, referred by a friend, that was extremley worried about my headaches. I told him they were really no big deal because I had been living with them as long as I could remember, I was 31. He had me in an MRI the next day, I was called into a neurologist office and told my brain was falling out of my head. My symptoms were severe; constant ringing in the ears, memory loss, loss of balance, loss of motor skills, floaters in my vision, etc. I was so use to living with all this I really paid no attention to any of it. They wanted to operate immediatly but I wanted to wait till after the hloidays, I mean really, I had it since I was born, what was another 3 months. I was really never worried, I had a awesome team of surgeons at the Semmes- Murphy clinic here in Memphis that made me feel comfortable. But I will not lie, I said many times during my recovery I would never do it again, but now that I have healed i would do it all over again.They cut out a 4x6 inch piece of my skull replacing it with the muscle of a cows heart and removed the C1-C3 crossbones in my neck. Recovery was slow, 6 months off work, no driving for 4 months, lots of stipulations, but the alternative was to be a quadrapalegic. I have not regained my lost memories, my friends joke about it and I developed migraines, which are miserable, but I would still go through the surgery again. I will tell you that acupuncture has also been a tremendous help, I know a lot of people may think that is crazy, but it has worked for me.I do not take any meds, and I function normally. I resumed evertything I did before; hiking, canoeing, whatever. I don't know if I helped any or not. I just know it helps to talk to someone that understands the pain. Find a doctor that understands!! like I said, memory loss is a big part of it and I cannot for the life of me remember my drs name, but a good place to start is Semmes_ Murphy.....good luck

Julia's picture

Hi Monika, Do you remember

Hi Monika,

Do you remember how many millameters your cerebellum was out of your skull? Just wondering how your Chiari compared to mine.

Julia

Monika's picture

9mm

9mm. I'm under the care of a neurologist who has referred me to a specialist in my area.

Emma Raffell's picture

Chari-after surgery???

Hi my daughter was diagnosed with Chari 2.5yrs ago and had surgery 3 wks after mri scan showed it..she was very poorly couldnt walk, eat,ect she was 12yrs old at the time,however since the surgery she still has probs with her legs/back and neck some days her speech is even slurrred shes 15 now but sometimes really struggles, we have seen a dr but just keep getting told theres nothing they can do or may be she has knock knee ect but just wondered if anyone has any advice or nos why she feels like this?? should we push it further or has she just got to live with this??? thanks

Kristina's picture

Undecided

So , thought I was having a stroke and went to ER. Diagnosis "possible" TIA (stroke). Biggest surprise was result of MRI...ACM1 with 15mm herniation. Went to Neurosurgeon and yes, surgery is recommended. He also recommended I see a Rheumatologist ( I also have Arthritis and Fibromyolagia ) Together they felt it was in my best interest to start physical therapy prior to surgery. It makes sense to strengthen muscles in advance and work on co-ordination. So far sound advice. Now the decision...to have or not to have the surgery. Lots of symptoms ( that like many others were attributed to problems not related to ACM1 because we [me and doctors] did not know about it, not unusual).So at just shy of 60 years young I am still undecided. Thankfully there is no pressure from my surgeon, he has left it up to me to decide when. As he aptly stated..."you were born with this and have lived with it for 59+ years, so unless there is a drastic change, the choice is yours." .........So far I have used very little pain meds. over the years but I can detect there are changes. In the not to distant future I will in all likely-hood need to quit being stubborn and take the meds. So I pose this question to you, What are the benefits to the surgery and in your heart of hearts do you feel it was worth the risk, would you do it again ??

Serendip Visitor's picture

To Kristina 15mm, ACM

Hello, how has everything been going? Did you get the surgery? My 15yo son was diagnosed yesterday. They said he was born with it. He has 10.8mm. He has NO SYMPTOMS. He got a mild concussion from football and they discovered the Arnold Chiari from there. I dont want to do the surgery , especially since he has NO symptoms. I am scared. Looking for advice. Thank you.

Christy Seawell's picture

Tendonitis symptoms

My daughter had surgery for ACM in Jan. 2010. 13mm herniation and syrinx from her c-1 to c-5 & T-1 to L-5. She also has a wing scapula on her right side and since surgery her left shoulder is growing into a wing scapula. She has not gotten any better except for her headaches are down to 2-3 a week. She has a Basillar Impression??? Constant neck and back pain. Trouble swallowing, forgetful, arm and hand pain, along with leg and ankle pain. She seen the doctor on 5-13-11 and he told me she is not growing right and has tendonitis in both ankles...this child is not active and when she does try to take walks she pays for it dearly. The doctor told me there is nothing they can do...I will not accept that and would like to know if anyone out there has any advice for me or if you have the same symptoms. I have a facebook page "Christy Seawell" West End NC. Please help! Please help! I know God is in control, but I truly believe he wants me to stand up and fight for her. She is only 12 years old and a shining light on this world. Please email me at . Thank you, Christy

Julia 's picture

Hi Christy, I wrote a reply,

Hi Christy,

I wrote a reply, but it disappeared from my screen so I am not sure if it was sent or not, so if you get 2 responses from me, apologies.... What I said though, is...you may need to get more opinions from other neurosurgeons who are very knowledgable in Chiari which could mean traveling more. There are Chiari Clinics in New York, Milwaukee, WI- Dr. Heffez, and in Denver, CO -Dr. Oro. You may also find other Dr.s on chiari websites like this one or www.conquerchiari.org. I have Chiari and traveled over 2000 miles to see Dr. Oro and other Dr.s in my area as well. The good thing though is that your daughter is still very young and the success rates are much better for young people than older people in their mid 40's and up like me... I have not had surgery yet due to that 'iffy' statistic.
God Bless your daughter and you too for your quest in her good health.

Sincerely,
Julia R.

Serendip Visitor's picture

Oh Christy, it breaks my

Oh Christy, it breaks my heart to hear of such a young girl not able to enjoy her life like she should. I do pray for your daughter to find the right doctor who can help her. I was just diagnosed with Chiari. I have excruciating headaches and tingling and numbness in my arms and fingers. Your daughter has a much worse case than I do. My advice is to not ever give up. Continue to fight for her and keep searching for a doctor that can help her. Don't ever believe that there is nothing else they can do. There is a Chiari Institute in Greatneck, NY. Their website is www.chiariinstitute.com. They have alot of good information there. I would get as much information from any source you can and follow up with any of them that may lead to a cure for her. My prayers go out to you and your daughter. I pray you find someone to help her real soon and she is healed. We need more shining lights in this world.

Diane

Kimberly Bastianelli's picture

Parent of siblings with Chiari and Syrnix

Both of my children my son who was 8 at the time had a 10 mm herniation. My daughter was 10 and had a 16mm herination and a large syrnix. I was wondering if there were any genetic studies that are being done to siblings with this disorder. My doctor said he had done many chiari surgeries but only 2 on sibling sets. Both are many years post-ob and basically free of all their symtoms, which make very happy but would like the name of some research studies. Thanks

Serendip Visitor's picture

Duke University

Duke is running a genetic study.

Julia 's picture

genetic study

There is a study going on in North Carolina I believe on siblings who both have Chiari. I forgot which school, not sure if it is Duke...? If I find which school is doing the study I will reply back again. I found this out last year on the Conquer Chiari website. You could look there for updated studies as well.

Julia

Serendip Visitor's picture

Chiari One Malformation

I was just diagnosed with Chiari Malformation. While mine is only 2mm, I am experiencing many, many symtoms. My Neurologist tells me it is nothing to worry about. He too is puzzled why I am experiencing so many symptoms. I believe that Chiari is very much misunderstood by many Doctors out there. My Doctor dismisses my symptoms and says something else is causing them. I have daily migraines with occasional auras, daily nerve pain headaches (different from migraines), electrical pain that shoots up the head when I sneeze, cough, laugh, or bend down. Dizziness to the point of almost passing out. I have sleep apnea, sinus congestion without having any other symptoms of a cold or allergy. My spinal cord is also compressed in the C5-6 area. Please reply and let me know if anyone has found a Doctor that understands Chiari and has been treated. Does anyone know if there is financial help for those who can't afford the surgery or treatment?

Serendip Visitor's picture

There is help - and educated specialists!

Hi! Do not fret. You are not alone and there are many doctors that are qualified and specialize in the treatment and successful surgical rehabilitation of people sufferring as you are. I'm not sure where you are or your situation (as you alude to affording surgery and treatment), but The Chiari Institute and Dr. Poalo Bolognese is a good place to start. They have a website that you can google and an information packet for folks seeking consultation. It could be that you actually have compounded problems - not just Chiari. There are many other doctors (neurologisits as well as neurosurgeons) that others may suggest, I just have experience with TCM as does my sister and trust their physicians.

I've also been seeking other doctors, so I'm interested to see who answers you!

Good luck!

Serendip Visitor's picture

Help for Chiari

Thank you so much for replying. I am in Las Vegas. I haven't found alot of doctors that know too much about Chiari here. But I do agree with you, my symptoms may be compounded by other problems. I have settled a bit (mentally) since I first got the diagnosis. At first I was very distraught, thinking I needed to have surgery right away. But now I am thinking of just treating the symptoms instead of pursueing surgery. I will continue to educate myself and keep aware of others with Chiari and their outcome. I'm going to a Pain Management doctor who is going to put an injection in my head for the nerve pain. So hopefully that will help. I do have a question for anyone who might know...Does Chiari ever get worse? Mine is a 2mm right now. In time, if not treated, is this something that will grow or get worse? Many people have asked me that question, and I don't know the answer. THANKS!!

Serendip Visitor Susan's picture

Can Symptoms return

Hi, my name is Susan and I had my first surgery for ACM in 1988. I am so thankful that I had 15 years that were great. My symptoms have returned and have actually added a few more. I read an article on one of the Chiari sites that stated that they thought around 20% of Chiari patients have had symptoms return. The odds are in your favor that they won't. The journey down the Chiari path is one with many many turns. If you don't have a Dr. that you are comfortable with, keep making appointments and seeking out new Dr's. It is very important that you have a good relationship with whomever is treating you. Even though I have some pretty bad days, I have more Good Ones. I think those of us that have been choosen to have ACM must be very special people. I have learned a lot and have become a better person as I have ventured down the "Chiari Road". Good Luck and I will say a prayer for you............

Julia 's picture

Hi, I have a 6mm herniation

Hi,

I have a 6mm herniation and also have herniated discs around the same area as you. I got a cortisone shot (block) that helped with the pain. The Dr.s wanted to wait about surgery and see how this helped. It might help you to see if the pain is coming from the compressed discs or from chiari. Insurance covers the cortisone shot, at least mine did.

adama's picture

complication of csf leak

Had a pfd for c1m and did find until a year later; complications are set in; swelling lump in back of head and neck with severe headaches and cannot move my head backward or look up; limb weakness, and pain doing anything.

Sherry 's picture

swelling lump in head and neck after cm1 surgery

Hi Adama, did you have surgery for your Chiari Malformation? if so did you ever find out what caused the sweling in the back of your head and neck?

No Surgery's picture

I was told I have Chiari in

I was told I have Chiari in 2009. The symptoms was textbook and some more. After being told that I had no other option than to operate I went for a more alternative treatment. I dont know if this could possibly help anyone else but since I started avoiding Sugar and MSG I dont get sick. I follow the bloodgroup diet and go for regular Biofeedback sessions. No more opthalmic migraines. My vision is improving(I have macular degeneration). I can stand up without falling. Swallowing problems is history. Verigo is gone. No more ringing in ears. I go to gym and is regaining my strenth in my arms and legs. I can climb steps without difficulty. For the first time in a very long time I live like a normal person and no one will even know that I have Chiari unless I tell them.

Kathy Filippelli's picture

Chiari I

Hi,
I just read your comment on the serendip.byrnmawr.edu site. I have a Chiari I malformation and they are going to do further MRI's to see what is going on with it. My main symptom now is almost daily headaches. I, too, am very interested in alternative treatments. Surgery, I pray, will not be happening with me. If possible, can you e-mail me back and let me know how you are doing and what alternate treatments worked best for you.
Thanks so much.
Kathy
Long Island, NY

Serendip Visitor's picture

Up untill today I am still

Up untill today I am still healthy as a horse... No symptoms. I must admit it is not easy to stick to the diet but the alternative is much worse and I keep on reminding myself everyday. I am still on the bloodgroup diet and go for regular biofeedback sessions. Avoid sugar and msg as far as possible and then a possitive attitude helps with the rest.

Hope it helps!

Toya's picture

Drop attacks

In 2005, a few months after having my baby, I started having these weird falls. My child was waking about 6 times during the night every night. I just figured I was falling due to exhaustion. Then my mother saw me fall one day and was very alarmed. We scheduled an appointment with my doctor who ordered and MRI. The MRI revealed Chiari malformation with a 6mm herniation and a tiny syrinx in my spine, scoliosis and an angioma in the thalamus.
The neurologist did not think this was causing my falls. I had other symptoms; headaches, burning and tingling sensations in my arms and legs, dizziness, memory problems and weakness in my hands.
After a few years, the falls tapered off to about once a week. Then, I slipped on ice and hit my head a couple weeks ago and the falls have increased to two or more times a day.
Does anybody here have drop attacks with their cm or syringomyelia? Does anybody know why this happens? Have you had the decompression surgery and did it make the drop attacks go away?
My family freaks out over these falls. My five year-old worries. I want to find a specialist and get this taken care of because it's freaking me out too.

Serendip Visitor's picture

Drop Attacks

I am getting ready for Chiari surgery for my 15 mm herniation. I had been having classic chiari symptoms and recently have been having brain stem compression symptoms. Drop attacks can be one of the symptoms of brain stem compression. There are other reasons for drop attacks, but since you have the other Chiari symptoms, I would tend to think they are being caused by the Chiari.

A MRI w/contrast and a MRI cine study would be helpful. We were told my herniation was 7 mm and after those two scans we found out my herniation is 15 mm. I think you need to see a Neurosurgeon, it will eliminate many months of frustration. I hope this helps.

niki's picture

chiari malformation type 1

my daughter is 4 years old and was diagnosed in october 2010 with chiari malformation type 1 she had been having symptoms for 3 years but they were put down to growing pains in turn's out that she has a cerreblar tonsil herniation of 17.5 mm!!!! and a syrinx (swelling of the spinal cord) from t1-t8. she hasn't been offered any surgery as of yet and were told to just monitor her symptoms for now but as each days goe's by a new sympton seems to arrouse. I currently feel let down by the NHS service for leaving my daughter in this discomfort for so long and wish they would do something to help her we haven't even been offered any medication other than calpol which she has now become immune to...am i right to be feeling let down or am i being over anquish?????

Ms. Lee's picture

Chiari

Go see more than one doctor before getting discourage. Neurologist preferably!!

 Visitor Quotes's picture

It Goes to Show

It goes to show that their are many conditions that are not even known to your ordinary doctor. He would probably prescribe some pain killers of sort. If you feel not right. Get it checked properly. Do not let anyone tell you that nothing wrong with you when you feel clearly something is wrong.

lisa's picture

Newly Diagnosed by MRI

Hello, I recently had an MRI done after years of migraines, and chronic pain. I've been diagnosed previously with Scheurmanns disease, fibromyalgia, osteoporosis, 3 herniated discs in neck, kidney failure, and I have 3 different blood clotting factors(which put me at a HUGE risk of blood clots). I have my MRI report and it reads...The cerebellar tonsils appear nearly 8mm below the foramen magnum suggesting Chiari 1 malformation. The posterior fossa also appears small. There is a mild elevation of the tentorium. There is a questionable tectal beaking. Due to association of Chiari 1 malformation and Syrngomelia, contrast enhanced cervical spine MRI suggested. My consultation with a neurosurgeon was cancelled today because he was called in for an emergency surgery. I am terrified to hear what this all means. I don't see too many people having an 8mm. Also does this sound like I also have the syrngomelia or are they just ruling it out?

kati's picture

chiari

My daughter was diagnosed with ACM2 when she was 3. SHe had a haed time with headaches and seizures fort a few years. Then we went in for a routine apt, and they said she was fine. That there were no signs of ACM. She is now 15 and having terrible headaches and always has the taste of metal in her mouth when she gets them. Can it come back?

angie's picture

the taste in her mouth and

the taste in her mouth and headaches sounds like seizure activity that I have and i have never heard of acm disappearing - i would take her for a second opinion if it were me! i could be wrong but it wouldnt hurt.

Serendip Visitor's picture

It sounds like a CSF leak

It sounds like a CSF leak which is a common side effect of brain surgery. I would have your daughter checked out and have imaging studies done to make sure there isn't a leak. Also see if her pain gets better with caffeine and laying down. A positional headache is often a sign of a csf leak. good luck

stephanie mims's picture

thank you julia for answering

thank you julia for answering all of my questions. i am just waiting to see the outcome of this whole ordeal. i have been very weak in the arms, and my head has been pounding for 3 hours now, and low percocet is not working anymore, so i have a neurologist appt on nov 15, then dr oro on dec 3. so hopefully this will be a good consultation meeting, and i have a few questions to ask. i take cymbalta and it makes me tired and sweattie, and i don't like that feeling. i'm sorry to hear that you came to your meeting by yourself. 2000 miles, wow, you must be somewhere in the east coast. yes i am happy that i live in the same town as the doctor, because if things fail, i can call his house. i was looking on the website and see that they can correct this without surgery, somewhere in dallas www.drmccarty.com,so i am going to look that up and see whats that about, i never heard of that, but i always like to investigate.
stephanie

stephanie mims's picture

Denver, Colorado

OKAY, SO IF THE PAPERWORK SHOWS THAT YOU ARE SLIGHTLY BELOW 5MM, DOES THAT MEAN THAT THEY WILL NOT DO SURGERY? I HAVE BEEN IN PAIN EVERY SINGLE DAY, AND CANNOT TAKE THIS ANYMORE. I HATE POPPING PILLS, AND I DON'T WANT TO LIVE ON DAILY PILLS, ANY SUGGESTIONS? I AM SEEING DOCTOR JOHN ORO ON DEC 3 2010....
STEPHANIE

Duann's picture

Dr. Oro

I had this Dr/ do my decompression surgery 5 months ago. A lot of the symptoms are much better. No more balance issues or scalp numbness, trouble finding words improved, ringing in ears improved, pain in neck improved but I am still having pain in right shoulder blade area.
I loved Dr. Oro! He truly cares about people. I am still fatigued but he told me recovery is 6 mon. to 1 yr.

Robin Neddermeyer's picture

Dr. Oro

I also had Dr. Oro as a surgeon. I really liked him. Where is he located now? I've been having more problems and would be great to see him if he's still in practice. Any help would be greatly appreciated.

Julia's picture

Hi Robin, Dr. Oro is in

Hi Robin,

Dr. Oro is in Denver Colorado, at the Aurora Medical Center area. I believe you can look him up online.

Take care,
Julia

Serendip Visitor's picture

5mm Herniation

My scans showed a 5mm herniation with full blown Chiari symptoms. I had surgery in 2005. While operating, another 6mm herniation was found that didn't show up prior to surgery. My neurosurgeon firmly believes that size DOES NOT matter.

stephanie mims's picture

chiari

does anyone know what the degree your herniation is suppose to be?
i was diagnoised with acm in sept 2010, andwill be seeing doctor john oro in colorado, and my paperwork shows slightly below 5mm...anyone with any info that can help i would appreciate it. thanks
stephanie

Julia's picture

Dr. Oro

Hi Stephanie,
I saw Dr. Oro last year and I have a herniation of 5-6mm. I am partially blocked according to Dr. Oro though other surgeons say I am almost completely blocked in the foramen magnum...
I have some pain too in my legs and arms. I am in my 40's and suggested I wait on surgery and that there were millions of people with my degree of herniation and living with it.
He also pointed out that I have herniated cervical disc and said that my pain in my neck and arms is probably from that. Did you have a cervical MRI too? I am having an epidural tomorrow to see if that will eleviate some pain. It will be interesting to see what pain disappears and which pain stays. I have leg pain and cannot figure if that is also from the Chiari...
Dr.Oro's office asst's are very nice. Don't forget to write down your questions and ask, ask , ask!! The appt. goes quickly.
Sincerely,
Julia R.

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