The Complexity of Arnold-Chiari Malformation
Submitted by SerendipUpdate on Mon, 01/14/2008 - 10:47am.
Biology 202
1999 Second Web Reports
On Serendip
The Complexity of Arnold-Chiari Malformation
Nicki Lynn Pollock
To the medical doctor, Arnold-Chiari Malformation, which may have a genetic link, is characterized by a small or misshapen posterior fossa (the depression in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal resulting in a multitude of sensory-motor problems and even some autonomous malfunctions (1). These many symptoms can come in a variety of forms which often makes a clinical diagnosis difficult. To the patient this disorder can present not only physical difficulties but also mental distress. Treatment options and their success rates vary widely, and proponents of the cause are demanding more recognition, research, and success. The study of Arnold-Chiari malformations can lead to additional questions and new understandings about the I-function, sensory-motor input/output paths and the general make-up of the brain and nervous system, but a complete understanding of the disorder may be a long time coming.Impairment and sometimes loss of motor control of the body and its extremities is one of the many effects of this disorder. Patients may complain of headaches, neck pain, coughing, sneezing, dizziness, vertigo, disequilibrium, muscle weakness, balance problems, and loss of fine motor control (1). The senses (hearing, sight, smell etc.) may also be affected in deleterious ways. On can have blurred vision, decreased sensation of limbs, unable to locate them without looking, decreased sense of taste, ringing of the ears etc. (2).
Two ideas about the nervous system that can be better understood from these observations are the concepts of having and locating the I-function. It seems that the I-function here is very often affected in terms of voluntary movement. A person with Arnold-Chiari malformation who has lost the feeling in and control of his arm for example will not be able to move it even upon someone's request and his or her own desire to do so. Some use of the I-function is definitely impaired. However, these observations do not seem to necessarily imply that some part of the I-function was damaged, because it may very well be located elsewhere- connections may have simply been lost. A person with Arnold-Chiari can still think and have a sense of self, but somehow can not connect with the various body parts that can be affected. Some uses and pathways of the I-function can be understood, but the exact location of it remains vague.
A lack of sensory input can also provide clues about pathways within the nervous system. Depending on the severity and specific location of the Chiari malformation different senses may be affected. Again, the location of where this information is processed can not be determined for sure from these observations alone. It is obvious that the pathway needed for sensory information to travel is indeed affected but not the ultimate processing center itself.
Recently, diagnosing this disorder has become relatively easier with the advent of the MRI (magnetic resonance imaging) so that doctors and patients no longer have to rely on a symptom-based diagnosis which was troublesome for both (3). The symptoms vary widely and encompass many parts of the body. Many deemed Arnold-Chiari sufferers the victims of some psychosomatic disease before the biological nature of the disorder was understood (5). Now, with the possibility of having a genetic predisposition for Chiari and the early detection devices available, one can more easily be diagnosed properly (2).
There are both medical and non-medical ways to treat Arnold-Chiari malformations. When symptoms develop, patients should seek a doctor's advice to consider a posterior fossa and upper cervical decompression. This procedure can provide more room around the lower brainstem and promotes improved neurologic functioning, though it is not a guaranteed solution (3). Patients may also benefit from various and symptom appropriate forms of physical and occupational therapy. Some patients also explore non-traditional options such as herbal therapy, acupuncture and others (5).
The symptomology of Arnold-Chiari malformations can lead to many useful observations of the pathways used by the nervous system to maintain control and awareness of the body in terms of the I-function and sensory-motor abilities. However, due to this large range of symptoms and the fact that current attempts to treat them all are not always successful, there may be other things going on in other areas of the nervous system which contribute to the overall effect of Chiari. The situation at the base of the skull, where the malformations are readily noticeable and are thought to be the cause, may be more complicated then believed or known at the time. As always, a better understanding of what is actually happening in patients with Arnold-Chiari malformation is needed.
WWW Sources
1)American Syringomyelia Alliance Project Inc.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
|
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.
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.
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.
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
Chiari doctors in Canada
I live in Alberta, Canada. I have struggled with a variety of symptoms for many years. I was recently sent for an MRI to check for MS and a 5 mm Chiari herniation was found. I have been warned by a neurologist that I will not be able to get the surgery done, as the herniation is too small, there is no syrinx and his assessment was that the spinal flow was 'adequate.' Yet I have extreme occipital headaches, muscle spasms, bouts of paralysis, dizziness, swallowing problems, and cognitive issues. I am looking first for a neurosurgeon in Canada who operates on sympotomic patients with smaller herniations... Are there any Canadians out there who have found a great neurosurgeon.
ACM
I had surgery July 1991,no problems until Jan 2008 ,I had shingles and after that I developed severe pain all over my body. I went to Dr.and was told my bloodwork was positive for Rheumatoid arthritis but that I don't have it at this time, he told me to take Tylenol. The other Dr. I saw said Fibromyalgia but I am highly allergic to most meds and I did not want to take drugs that might cause an allergic reaction.This was in Oct.2008 and I have gotten worse since then I have headaches like I did before the surgery but now have vertgo when I stand up or lie down.If I lean my head back or forward I fall and I hold on to walls and doorways when I walk now. My neurosurgeron in 1991 was Dr. John Oro but he was at the Univ.of Missouri at that time. I saw on this site that he is in Aurora,Colorado now and I am going to contact him as I do not trust any Drs, here,now. I feel he gave me 18 years pain free and he can do it again hopefully. After reading how fast every thing came back to most of you I really have been lucky for 18 years .just wanted to share this info and who did my surgery. Good luck everyone.
ACM
I was diagnosed with A.C.M a couple of years ago. What I want to know is, does anyone have these absolutely horrific headaches in the back of your head and neck and sometimes it is so bad that it makes you vomit? No pain medication can take it away! I am just looking for others like me and I am wondering what others have done to relieve these symptoms? Please help, I really don't want brain surgery but I am desperate for help. I live near Tampa and was wondering if anyone knows any doctors in that area?
The only medication that has
The only medication that has helped with my headaches and especially neck pain is Toradol.
headaches
Hi TR,
I am having the same symptoms as you, started on 5/26/09. I am in the process of being diagnosed with ACM, which may have a connection with your headaches. I also cannot find relieve with over the counter stuff. Continued strong headache in the back. Do you have headaches in your temporal region? I have those, so they are trying to rule out any other stuff. All I can say is that I dont want surgery either especially since I've been reading about symptoms coming back. Ive read that excedrin with caffeine may help, accupunture, direutics, to name a few. I dont know of a Dr. in the Tampa area, but you must go to someone that has a lot of experience in this field of neurology.
Hope this helps
Chiari Info
CMF 1. I had my decompression surgery in January 2008. One of the bad things about Chiari repair is that this surgery is not guaranteed at all. I must say my symptoms went away almost immediately but now they are back. I will be having another MRI in a week and I am quite sure I will have to have another surgery. Make sure you really shop around for a great surgeon who is patient and who is willing to really map out a course of care for you. I was scared but I weighed my options. If you are able to afford it, get some info from John Hopkins in Baltimore or NIH (National Institutes of Health Hospital) in Bethesda, Maryland. These are wonderful research hospitals and they are ranked top in the nation. I have the names of a few other people and I know a neuro-radiologist who works at NIH and he knows hundreds of neurosurgeons in the U.S.
CMF 1
I am seeking advice, I have a 9mm deformation due to Chiari. I also have fibromyalgia, anemia, and disc herinations in my lower back which I had surgery for. I saw a neuro surgeon who wants to perform surgery but cannot gaurantee a 100% results. I do not know what to do and If I do nothing I am afraid of what can happen. I have alot of pain and I fall, I am on so many medications I am only 37 and am afraid of the future. Can anyone help with advice or suggestions? I would really love some help.
My view on it is that
My view on it is that without the surgery I am guaranteed to have these problems forever, but at least having the surgery will give me a chance to hopefully live a normal life
Chiari
Well I am almost 3 weeks post op for decompression. I had my first doc. Apt yesterday. It seems like most of u know that it isn't 100percent. But out of the 80 symptoms I had at least 50. I would list them but it would take way to long. So needless to say I'm 25 and have a 6 year old. I work at a school which let me tell u can bring a ton of stress and headaches. I went to the neurosurgen knowing I was not going to have surgery, I felt I learned to deal with it and it was scary to think about it. He did test and asked me if I noticed anything about my legs being weak, which I have but I thought it was because I needed better shoes from working all day. He told me it was just going to continue until I can no longer walk. So I had a cange of heart about the surgury.so fir those who haven't had it make sure you not at the risk of being parilized. At the doc yesterday he told me the strength in my legs r so much better, he first think we will have to do another one which is great. My nystagmus did not improve which is one of the things that bothered me the most but I have no back pain and I'll be able to walk!!! As soon as I recover I plan on making up for lost time with my daughter and husband. Everyone experience is differnt but to be honest I am really hurting and have spinal headaches. So it does hurt but mine was at 15mm and impacting my whole life. I 4got about telling how I found out and my neurologist experimce. But if u wanna know more just reply.
Questions
Hello...i was just recently diagnosed...for the past three months i have had horrible migraines, keep losing feeling of my arm and side of my face, and pins and needles in my feet...my doctor says it has nothing to do with the Chiari...should i go see someone else???
Injections for Chiari?
I have Chiari and a tether cord, my brain stem is so short that everything in there is all twisted, so this has affected my whole spinal cord, I have extreme pain in my back, mostly waist down, it can not be touched, over the years I've had cortisone shots and they helped for awhile, that was before I found out about having Chiari, I was also told I was born with Spina Bifida, have had leg pains since I was a child, and many other problems throughout my life, now at the age of 70, I just find all this out.
I've seen two NS and both said they wouldn't touch me, because of the mess in my neck area, and can't do the tether cord, because if they did this, the cord may snap and the results of that could be major.
At this point of life I live an active life, have my own business, and keep busy, but my back is the biggest problem, I see a pain management doc next week and from what I read if you have Chiari, you should not have injections in the neck or back area, and I don't know how well he knows Chiari and if he recommends more cortisone what should I do, would it be safe?
I can't use a tens unit, allergic to the tape, blister up from it. What can be done for this pain, that is safe? I really need help with this, the pain is slowing me down and it's hard to some of my work.
I am in Balance PT right now, using the new balance maching, just started last week and hope it helps, I now use a cane to keep from falling.
Any insight on this would be so helpful, thank you in advance.
chiari at 70
It is wonderful that you have remained so active. This is probably what has helped you the most. Keeping the muscles strong is great. I am sorry to hear about your suffering though. I am 45 years old and have had several surgeries on my brainstem and back. I am unable to work or do most of the activities that I once enjoyed. If your quality of life is acceptable, given your condition, I would encourage you to continue to do what you are doing, of course make sure a doctor agrees. I wish you the best of health and happiness. I do get cortisone injections and they are helpful.
arnold chiari maldformation 1
i am a 22 year old male from massachusetts, i have just been diagnosed with this disease, i have been having many of the symptons, i am finally seeing a neuro surgeon to get surgery, to what i wear i will recover 100 percent and i will be a whole new person finally, i can't wait to getall the pressure off my spine and not be in severe pain any way
Chiari Surgery
I was 18 years old when I first started getting headaches. (Mind you I am now 32) so for 14 years I was sent to different doctors stating that I suffer from migraines and sent me home on pain medicine. All my CT scans kept coming back as normal. Finally in April of 2008 a neurologist saw the CT scan and said that they saw something. (14 years later) So they sent me for an MRI. They found what was causing my headaches. It is what in the "medical field" as Arnold-Chiari type 1. Of course I didn't know what it was, and the neurologist at a "basic" hospital didn't have much information to provide me, so they sent me home with pain medicine and that's it. From april-dec 2008 I was in and out of the hospitals with severe headaches that were so powerful that it even hurt to breathe. Finally a lady at my church referred me to a neurosurgeon in Chicago at Northwestern Memorial Hospital. Dr. Levy is his name. So I did some research on him and he was the #1 neurosurgeon in Chicago, not only that, but he is the #1 neurosurgeon that does Arnold-Chiari surgery. So I made an appt. to see um in Dec. Unfortunatly I was in the hospital the day of my appt. and could not make it. Yes I was in the hospital due to my headaches. So I finally got an appt. in Feb 2009. It was Feb 5, 2009. I was scheduled for surgery on the 27th. The surgery went GREAT! I was in alot of pain afterwards, but it was worth it. The doctor told me that my blockage was 10x's worse then what the MRI showed (that wasn't very comforting) It is now 3 weeks post-op and I know that I will have some pain, but I am having REALLY bad pain on the right side of my head that is getting unbearable....of course CT scans have come back normal. I can't wait another 14 years to find out what is going on now. I will not. You go to hospital's and they give you medicine, you go back for the same complaint, they think your addicted to the medicines and just want more. I can care less about the medications, I want to know what's wrong with me. Has anyone had any medical problems AFTER the surgery that is now where the surgical sight?
Anything advice would help. I do love my neurosurgeon Dr. Robert Levy at Northwestern Memorial Hospital in Chicago. and I would recommend him to anyone with Arnold-Chiari malformation.
But wonder if anyone has had any pains not near the surgical sight, that wasn't there before surgery?
Chiari surgery set back
Just wanted to see if anyone has experienced what is happening to me. I had decompression surgery Jan 14, 2009 and just started my fast walking again 2-3 miles a day. 3 days into my routine, I started having ringing in the ears again, wicked headaches, tightness in the jaw area and throat area and neck became stiffer and shoulders very sore and stiff also. These symptoms had all gone away 4 weeks after my surgery and now have returned. I called my neurosurgeon and he told me to stop doing the speed walking and wait till I am done with PT and once released from that I can try speed walking again. It seems if I try an exercise, treadmill, bike etc. Symptoms start coming back. Has anyone else experienced this. I want to stay in shape and not gain weight because that can make things worse also. I am a bit discouraged as I was just starting to feel back to myself. I am also on muscle relaxer at bed time because my neck and shoulder muscles never relax and I take a low dose of ultrset for the headaches.
Please write back if you have had this experience.
decompression sugery
i dont know if i can help, but i had decompession surgery in june 2006, Recently i have started to feel better, and wanted to get back into an excesize program I started going to a gym. Don't get me wrong I was walking yto keep fit on a regular basis. Now I have severe pain in my right arm. Could not move it.... Went to emegency room to be tol take these pain pills (vicodin) and you have
busitis. I went to Dr. who ordered mri, and it seems as if my syrinx has grown and i have protruding disk at c7. refered me back to neruerosurgern, where do i go from here .I'm sorry about your pain, but maybe you got into excercise to quickly.
Doctor Info
I used neurosurgeon Dr Ghassan Bejjani from the University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania. He is THE BEST.
Best of luck to you all
Heather
Side Effects from the surgery
I was diagnosed in 2007, surgery was in aug 01 2007; as of 2009 i suffer pain on my left shoulder and back of my neck. Now because of hard times, I am now on pain pills and muscle relaxation meds. I dont know what do because the doctor correct the problem, so what about the cont pain
My husband was also
My husband was also diagnosed in Aug 07 had surgery Oct 07. Nov 07 had meningitis. Dec 07 had surgery to install a shunt due to hydrocephalisis. He also has syringomyelia the length of his spine. He did good after surgery, his symptoms were alot better. Then after the meningitis it seemed to slowly come back. He has just been diagnosed with TOS (thorasic outlet syndrome). They believe this is causing the pain in his neck,shoulder and arm (left side). He is taking physical therapy. He too stays in constant pain. In the morning it is a dull pain and depending on the day he has it gets up to a 8 on the pain scale. We are waiting on results of MRI now. This doesn't seem to be something that can be corrected 100%. The results from surgeries done are different for everybody. Some good, some bad and some stay the same. I think the Chiari Institute in Great Neck, NY is where all Chiari patients need to go. It is just not always in the budget to get there.
I have been suffering from a
I have been suffering from a feeling of being high for 7 years. I also have been suffering with extreme arm pain for 2 1/2 years. I mean excruciating pain that feels like my bones are ready to explode. This pain usually happens on my left side. I have recently been told that I have Arnold Chiari Malformation I. I have read the symptoms and I have found that many things I have going on since I was a kid that I thought were normal can in fact be this condition. The only thing is, the information you read on Chiari does not go into detail about arm pain. Does anyone have this type of symptom with their Chiari? Also, there is nothing in the symptoms about the high feeling. Does anyone have that going on? I am so terrified!!!!! Even though I have been living with this for a long time, I am afraid of now having it. I am also afraid of the surgery and how painful it will be. I have recently started school to further my education and worry if this will effect my abilities in school? How about my ability to take care of my children? I am very scared. Anyone with info, please contact me
arm pain
I read your listing above and I too have BAD arm pain. Everything I have is on my left side and I am left handed. I carry my 2 babies on my left sid and have trouble writing now. It is very paunful. I have been told that I have a 9mm herniation and am seeing a nuerosurgeon in 2 days. Not sure of my treatment at this point but I need some help. On top of my arm I have leg, nec and eyeball pain that is very painful. My base of my skull pain is enough to make me want to lay down all day eeryday! I hope you are well. did you end up having the surger? Please let me know What state was yoru dr in?
chiari
I was diagnosed with chiari I in 12/07 decompression in 2/08.symptoms my whole life. Lucky to be alive. Gods not done with me I guess.
I had arm pain with mine. The high feeling I'm not sure about. I did have some dizziness and some of the feeling like just before you puke when you are drunk if you know what that feels like.
I also know what being scared as hell of the surgery feels like and i'm not going to bs you it is painful. My surgeon said mine was more painful than usual because I had a disc fused at the same time. Two separate surgeries but it was definitely worth what I went through.
I had a herniation of 11 mm and a 6mm syrinx.
chiari
hello to All,
I have had the Surgey 19 yrs ago and I still suffer from the Pain. I was told by the Doctor that the pain would go away.... I was 18 yrs old and was pretty scared at knowing that i had to have the surgey....
Chiari 1 Malformation 6mm no syrinx
I have the above condition. I am no candidate for surgery.
Have been looking on the internet (and doctors) for alternatives
for months with no success.
Is there anything naturally out there to keep this situation
from progressing. I am dealing with the symptoms with no meds
the best I can.
Your reply would be most appreciated.
I have only a 5mm chiari
I have only a 5mm chiari with no syrinx -- my surgery date is January 7th.
I also visited several doctors before finding the right one...
All of my symptoms came immediately after my car accident in August of this year. I have never heard of ACM, didn't know I had it -- they contribute mine to the car accident - where I had severe neck injuries....
I know its frustrating going from doctor to doctor --- but My primary doctor put things in perspective for me in a way...he said "your life is worth pissing a few people off - so find the help - demand the help!" He is such a nice old goat with such a way with words.....hang in and fight...
Lisa in Boston
I noticed you are from
I noticed you are from boston I am recently diagnosed (yesterday) and I am looking for the best neurosurgeon. I am from CT so Boston is a great option for me. If you don't mnd telling who s your DR. It is all very stressful and overwhelming especially to here that many people go through the surgery and still have the symptoms.
ACM
My sister-in-law was diagnosed with ACM Type-1 around 5 years ago.She is 35 years now. She had 2 surgeries. They put a stunt from the neck to stomach. He situation is that her right side of the body has no sensation.She is unable to walk without support. Also, she is not in this country now.I am trying to find out from the doctors if there is any further treatment available here in US and what is the approx cost ( she wont be covered by insurance).I would really appreciate any ideas anyone can suggest.
Thank you.
ACM 1
My husband was diagnosed with ACM 1 in May 2007. He had been diagnosed as having epilepsy since he was 6 months old. He was seizure free from age 15 to 34. He had a massive seizure Memorial day 2007. An MRI revealed he has ACM 1. That explains all the syptoms he had been having most of his life. His neurologist just told him to take Lamictal to control seizures, and that was it. Should we find another neurologist? His headaches are becoming more frequent and more severe. I am very worried about him. Thank you in advance for any responses.
I would find another doctor.
I would find another doctor. I was having SEVERE headaches since I was 18, I am now 32. doctors like to tell me to take this take that, and nothing worked. Headaches got more and more severe. I wasn't diagnosed until april of 2008 (when I was 31) and of course NO DOCTOR new what the heck Arnold-Chiari was. So again it was take this take that....and then I was looked at as a pain medicine addict because nothing helped the headaches. I knew I wasn't an addict, but also knew that I couldn't keep living like this. I have 3 little girls. FINALLY I had a referral from a lovely woman at my church to a neurosurgeon in Chicago. His name is Dr. Robert Levy at Northwestern Memorial Hospital. He took one look at my MRI and said "you need surgery" I am so glad I went there because when he went in and did the surgery and said "this was 10 x's worse then what the MRI showed.
I would definatly find another neuro, but would really suggest a neurosurgeon. Take the MRI to a neurosurgeon and tell them what has been going on. I think that would be your best and safest bet.
Hope this helped and I wish you and your husband good luck!
Kim
Would suggest you see the
Would suggest you see the doctor list on www.wacma.com for
a doctor in your area.
chiari 1
may 16,06 I had surgery for chiari malformation decompression with reconstruction and through the surgery i end up with bacterial mengitis and sept mengitis and renal failure.god healed me and i thank god.I still has headache and i have blure vision all the time.i still have alot of problems now. i know if god brought me out then and healed than.i know he will do it again.you see he's my strength,and god is my great phyisian he's my present help an the time of need.that means he will never leave me.and by his strip i'm heal and i speak healing all over my body.
14 year old daughter has Chiari
Hello Everyone,
My 14 year old daughter was just diagnosed with Arnold Chiari 1, and the often accompanying Scoliosis (no one here has mentioned scoliosis, so I wonder do you know to have your doctors check for that?) Anyways does ANYONE on this site know if there is ANYONE who has , had the de compression surgery and remained fine ? and not had symptom reoccurence or worsening ? She is only 14, I hate to think she is doomed for life with this condition that has no hope of betterment... have any of you been permanently helped/healed/releived ?????
Thank You !!
Surgery
Hello,
I hope your daughter is doing ok. I was diagnosed with AC1 when I was 15 and was scheduled for the decompression surgery 3 days after my diagnosis. I was having severe headaches almost every day before the surgery and from what my Mom says I was having the headaches ever since I could tell her my head hurt.
Of course it took the docs 15 yrs to actually do an MRI and find out the problem.
I can honestly say the surgery was very painfull to recover from. I was on moraphine after the surgery and was still in a lot of pain. I was out of school for about a month and a half, but it really takes a lot longer to recover and gain full movement of the neck back. I can say(thankfully) that it did relieve the horrible headaches. I still get them every couple of months and when I'm lucky sometimes 4-5 months apart. They are not totally gone but easier to have a normal life when they aren't every day. When I do get them they are still as bad as before though. I turn 30 in a few months and have lived a pretty normal life since the surgery. I dont have a lot of symptoms of AC, mostly just the horrible mind exploding headaches, dizzyness, not very coordinated, etc... nothing too bad like I've read here.
MC info
Thank you for giving us hope... my wife is 32 and was just diagnosed today. All I could read anywhere in these blogs is that the pain returns and is sometimes worse. We now have hope of some kind of semi-perament relief to the pain and a normal life. Thank you
I was diagnoised with chiari
I was diagnoised with chiari type 1 malformation in March 2008 after 5 long yrs. of pain and misdiogiseing. I was told that I had CMF 5yrs ago but that this was not the cause of my problems. I sent my MRI to a wonderful neurosurgion in Aurora Colorado Dr. John Oro he as written books and articles on chiari trying to inform more doctors about this condition.His web site is www.chiaricare.com
He looked at my MRI and called me for a visit to his clinic. He said the tonsils did not look that bad but did a CINE flow study. That is what everyone with chiari should have. My cerebellum was blocking my spinal fluid completely. It was just dripping back down. I had decompression surgery June 3 2008. When he got in there he noticed one tonsil was herneated at 4mm and the other was 6mm, and my brain stem was enlongated. This did not show on the MRI or the CINE flow study. The surgery went well I felt great for about two months expect I now have Occipital nerve damage on the left side of my head and have been doing steriod shots. I have not been to work since January. I was wondering if anyone else has had Occipital nerve damage and if it will go away? My doctor really seems to care and is trying to help me, but I guess only time will tell.
Arnold-Chiari-post surgery affects: blurry vision
Hi-
My son is 14 years old and had decompression brain surgery for Arnold-Chiari. The procedure involved having a craniectomy and a shunt was placed in his 4th ventricle to drain and assist the flow of cerebral spinal fluid on August 7, 2008. He has never had any vision problems prior to the surgery. Two weeks after the surgery he had intermittent episodes of blurry vision from 5,10,15, 20, 30, 120 minutes including 6 and 7 hours of blurry vision. The optometrist found nothing wrong with his vision and a CT scan revealed nothing.
Has anyone had the same symtoms and if so what was the outcome? My question is what could be causing the blurry vision and what procedure or outcome if any have been done?
I would appreciate any support on this and an email would be very much appreciated.
symptoms coming back after decompression surgery
i have been reading the comments on here. i am like some on here that have left comments. i had the decompression surgery in august of 2006. then i had what was a called a cervical lamenectomy in june of 2007. now back in august of 2008 my symptoms have seem to come back. i am having the headaches in the back of the head. my balance is starting to be off now. i lose my balance a lot of the time now. i have very bad pain up and down my back. im havin blurred vision now which i didnt have before. i havent been able to work for over a year now due to pain ive been having so that means no insurance. i dont have the finances to get insurance on my own. i have filed for disability but that is a hassle in itself. i wish someone could help me find out if there any resources out there to help me out with the finacial problems due to me not being able to work and not being able to afford going to the doctor. im gonna probably have to go to the ER tomorrow if i feel any worse but not sure if they will even take me in. if anyone knows any resources that may help me i would very much appreciate it. May God Bless everyone that is going through the same things i am going through. it is nice to have websites like this one where you can post comments or chat with people that are going through the same thing i am. if anyone needs to talk or just have someone that is having a tough time going through this and needs a friend please dont hesitate to email me.
What should I do???
I have been mildly sick all my life but in 2004, I became so sick that I almost died. I have been given the run around from pcp's, pain management docs, and other professionals. I live in a rural area and am running out of options. I haven't been diagnosed with ACM but I have two MRI's sitting here, one from 2004, and one from 2005 that is most definitely ACM and would also explain why I have symptoms all over the place. I have been tested for MS, lupus and a bunch of other stuff. Most doctors just think it is caused from depression and I am sick of it. I was in college, raising 3 girls and working when I first got sick and depression had nothing to do with it! Any suggestions on where to go from here, please email me? I just want to give my babies a normal life again. Thanks everyone!
Response to Andi Nichol (Sept 2007)
I was diagnosed with ACM 7 years ago because I suddenly started suffering from severe headaches that would often times block my vision. Thankfully, my PCP was very proactive.. she did a CT Scan and MRI right away and identified the malformation. I've been fine ever since... I've had 2 pregnancies and cesearian births (they recommended that I not have a vaginal delivery due to the build up of inter-cranial pressure, which could cause problems). Within the past couple weeks, though, I, too, am suffering from quick, piercing pains in the back of my head on the left side. It's a short-lived pain, but sometimes there's a dull ache that's not really painful so much as a little uncomfortable. It happens 2-7 times per day. I've contacted my PCP and we're going to do another MRI of my brain this summer when I'm back in the US to see if there have been any changes. (My husband is fulfilling a work assignment outside of the US and I can't get good access to care before we return to the states for the summer.) Andi, did you go see a doctor and find out if your headaches were related to the ACM?
symptoms and treatment
hi
i had the decompression surgery in 2000 it helped some but for the last 3-4 years
my symptoms have increased. some mornings i my eye sight is so blurred that i
barely can read without straining mind you i already wear glasses. i also have
more severity of pain on my whole right and left side. it even hurts to hold a
pencil or pen to try to write. for the last 4 months i have begun to have this
weird feeling in both legs. my medical physician seems to not have a clue as
to chiari syndrome every time i see her she just refers me to another physician
i already have a neurosurgeon that follows me on the regular. i have a hard time
at work because they don't understand. i work in the a hospital in the infectious
disease clinic which consists of typing most of my eight hours sometimes more.
i am constantly in the emergency room for migraines. what can i do to have some
of the people whom don't seem to understand chiari to understand.
I also had decompression in
I also had decompression in 2002. It's been 5yrs and im 37 yrs old three childern who lost their father in may 2007. Im getting worse and i feel that i wont make it to see them all through school. the doctors look at me and say oh ur ok its just in your head. Im like yea but they think im crazy! If you get awencers please let me know. I can't work anymore but cant get help! Please keep looking for info!
Shannon
I don't know what to tell
I don't know what to tell you to do, I can only tell you what I have had to do. I had my surgery in 1988 followed by another surgery for hydrocephlys. I have had a headache ever since. In the past 6-8 yrs. my symptoms have all come back and more. I have little or no balance (I now use a cane and a walker) and the pain and burning in my arms, back of head, neck and back us horrible. I see a nuerologist on a regular basis and he tells me that there is nothing that can be done about anything but maybe the pain. I have been to 2 pain clinics, had physical therapy, counseling, etc. Most people including doctors and the social security board don't get it at all. Life is certainly not what I would wish on anyone else. I was recently refered to a new pain clinic and praise the Lord, they have offered me hope for the pain. I am awaiting a call for an appointment to have a neuro stimulator surgically implanted. My hopes are high that this will help, they seemed to know what I was going thru and willing to try to help. Maybe you should check this out. It won't help with the balance issues, weakness in my arms, etc. but to be pain free would be great. Susan
Chiari 2 & 3 TCI & syringeomelia with an aneurysm
I had a serious work related injury am being treated by the Chiari Institute of America in New York, that said I recently had a blood clot putting me on cumadin. If I don't have surgery soon I shall perish.
MY NAME IS GRISELDA I WAS
MY NAME IS GRISELDA I WAS DIAGNOSE WITH ACM IN 2005 AND HAD SURGERY IN DECEMBER. SINCE THEN I FELT FINE UNTIL A YEAR LATER THAT I STARTED WORKING AND ALL THE SYMPTOMS STARTED TO COME BACK SINCE THEN I HAVE HAD TWO KIDS AND I FEEL ALL THE SYMPTOMS AGIAN I CANT AFFORT TO SEE A DOCTOR CAUSE I DONT HAVE THE MEDICAL ASSESTANCE OR MEDICAL INSURANCE TO HELP IM A SINGLE MOM AND AM TRYIING TO GET MY HUSBAND BACK FROM MEXICO CAUSE HE DOESNT HAVE LEGAL RESIDENCE I SUFFER FROM PAIN EVEN WHEN I COUGH,OR YAWN AND I KNOW THAT CANT BE NORMAL I NEED HELP I AM ONLY 21 AND HAVE A 10 OLD AND A 2 YEAR OLD IF YOU KNOW WHO COULD HELP LET ME KNOW
ACM 1
My daughter who is 14 was diagnosed today as having acm1 we have yet to
see a neuro surgeon, we have an appt 2 weeks from today My question is
is acm 1 something you are born with or does this happen from maybe a fall etc?
I TOTALLY AGREE!!!
MY DAUGHTER WHO IS 6YRS OLD HAS JUST BEEN DIAGNOSED. WE HAVE SEEN THE FIRST OF GOD NOWS HOW MANY SURGEONS THAT DONT GIVE YOU THE ANSWERS YOU NEED TO UNDERSTAND THIS MALFORMATION. I PRAY WE FIND ANSWERS QUICKLY. TO MY UNDERSTANDING THIS IS SOMETHING YOU ARE BORN WITH.WE WERE RECENTLY INVOLVED IN A CAR ACCIDENT WHICH BROUGHT ON THE BAD HEADACHES HER PEDIATRICIAN HAD A CT SCAN DONE THAT IS WHEN THEY SUSPECED THE ACM1, THEN CAME AN MRI AND THATS WHEN IT WAS CONFIRMED. WE SCHEDULED APT WITH NEUROSURGEON WHICH HAPPENS TO BE 1 OF THE 2 THERE IS IN OUR TOWN WHO HAS EVER HEARD AND DONE SURGERY ON THIS MALFORMATION.NOW WE ARE AT A DEAD END SEARCHING FOR THE BEST SURGEON AROUND HOPEFULLY IN ALBURQURQUE. WE NEED ANSWERS FAST SHE IS AT 21MM NOW. ANYONE WHO KNOWS OF A GOOD DOCTOR IN THE NEW MEXICO AND TEXAS AREA PLEASE HELP WITH SOME INFO.
My husband and his twin
My husband and his twin brother both have ACM 1 along with syringomyelia. They have both had surgery (decompression, shaved C1 vertabrae, and installed a patch). My husband was doing better after his surgery and then got meningitis which led to having surgery for a shunt. After all this his symptoms seemed to slowly return. He now has been diagnosed with TOS (thorasic outlet syndrome). He has received his treatment at Vanderbilt in Nashville,
TN. His twin brother had surgery in Memphis, TN and the doctor there did the wrong procedure on him. Needless to say he started having trouble again soon. The doctor told him it was in his head and said he couldn't help him anymore. Since then he also went to Vanderbilt and had scar tissue removed. He also got meningitis and had to have a shunt installed. He also had a CSF leak. His symptoms have continued to get worse. He has been diagnosed with arachnoiditis and is to a point where he can no longer work and needs a wheel chair. He was told he is a rare case.
I'm telling you this because it is so important to go to a doctor that handles this. Don't let just anyone that is a neurosurgeon do the surgery. I believe the doctors at Vanderbilt are very good. But if at all possible I would go to the Chiari Institute in Great Neck, NY. They specialize in this and do these surgeries all the time. They are concidered ELITE neurosurgeons and their CSF leakage rate is minimal compared to the other doctors. We weren't able to go to NY due to expenses but I now know and see that it is very important to go to a doctor knowledgable about this disease. It definatly can effect your way of life.
I hope this quick info was helpful and not too late. As with everything there are good stories and bad. Stay positive and Pray, God can get you through anything and even heal you. I pray everything works out for you and your daughter.
who was the dr in memphis
who was the dr in memphis that told you he could no longer help you?
Chiari Neurosurgeon
You want to contact Dr. John Oro in Aurora, CO. I do not know if he performs surgery on children or not, but he is very well respected. If you call his office (just google for the phone number) they can let you know if he sees children and if not he may be able to recommend someone. Hope this helps.
linda
some nuerosurgeons full of bs
Hello my name is marc a 36 yr old male,5 years ago i started having severe headaches!went to er twice only for them to give me a shot and a ct scan and send me home.after having same headache for 3 weeks i went to my reg doctor who told me i probably had a virus since er ct came back clear and sent me home with vicodin!after three 3 more weeks of severe neck and head pain off to nueroligist and diagnosed with cluster migrans.After trying migrane meds my ins did not cover at between 100 and 200 a piece we settled on more vicodin!started to have severe pain in different parts of my body,which changed all the time!was refered to pain management clinic where they began injections in spine and lower back which all 5 attempts were failed attempts!then in nov-07 sent to nuerosurgeon who sent me for a mri of head!Told me i had chiari malformation that was only 3.5 mm down onto and around my spine.that was not enough to cause my symptoms and sent me back to pain clinic for a nerve block to the head!i called my reg doctor told him to find me someone that could help me.He referred me to Loyola medical university in Chicago!I took him the copy of that same mri,he asked me if it was ok to dictate while his nurse was there to!He pointed out the chiari explained it and told me his nurse would schedule craniatomy decompression surgury!my surgury was on 2-28-08,it lasted 4 hours and my spinal fluid was almost 100% blocked! i came home on3-4-08 and already feel better than before i went in!I still have quite abit of recovery.I will not lie to anyone,the first night and first day after are very tough i mean very painfull!However each day after that becomes better and better!mostly to get home to your own bed and home!sorry to bore u but thats my story!so my advice is go to a university hospital early on and save yourself the 3-5 years of bullsh**!and according to my surgeon you can be severly blocked at 1 or 2 mm.god bless to all and there is hope its just getting there thats tough!
Neurosurgeons lack of understanding
I totally agree with you Mark! My daughter was injured during her Officer Basic Course, the Neurosurg at the VA hospital refuse to admit there is still a problem, we are getting 2 outside opinions to bring as evidence to get the Govt to pay for the needed surgery. It's almost a crime.
hello
what university hosital?what was your surgeons name?i am 27 years old and i need help
Agree with Universities as the best way to seek treatment
My daughter was a 30 yr old gung-ho Army Officer injured in a training accident (fell on her head & neck) Instantly she had every typical chiari symptom, but no one recognized it at first. It took a MD at the Uof Chicago Hospital to get her into surgery. The results haven't been as dramatic as we would have liked, but she did get some relief, is continuing to get therapy at Hines VA (right next door to Loyola!) If you need a penpal to discuss scars & aches, she's in your neighborhood, feel free to drop a line!
Best of luck to you...
Chiari in the Military
Hi,
I was wondering if your daughter had surgery or stayed in the Military. I too am an officer in the Army. I began experiencing a wide variety of severe symptoms following a short 4mile ruck run. I was diagnosed with a 13 mm herniation about 2 months later. The army doctors have told me a variety of things ranging from "it is no big deal", "chiari doesn't cause symptoms", to "you need surgery", and "it is a simple surgery" and "you will be back to full duty in 1 month" Can your experience with your daughter allow you to address any of this? My gut says that I need surgery because they symptoms are terrible but my brain says these army doctors just want to notch their belt with an unusual surgery despite their clear lack of knowledge. Unfortunately, I'm being told I must have a military surgeon perform this surgery since I am still on active duty.
Thanks
don't let them tell you "chiari doesn't cause those symptoms"
Hi! Please drop us an email through aol...or call? We would be glad to discuss the 9 years of trials getting the Armed Services and now the VA to work with Jean on her Chiari (no symptoms before the training accident).
Look forward to sharing any and all info we have
Lita Tomas
708.426.4092 majorltomas@aol.com
chiari malformation
I read your story and was touched. Can you please give me the name of your doctor from Loyola University?
Recently, I was diagnosed with Chiari Malformation and I feel alone in this journey because nobody seems to know enough about this condition. The doctors I've dealt with are not giving me the answers I need to understand this condition.
Therefore, I spend time online to make sense of what I'm going through.
Thank You.
chiari Malformation
Please, Please , don"t feel alone! I did at one point myself,feel alone, but with these web-sites, and surgery, I have done so much better! I had My surgery in 2006 and was at first very scared about the outcome. but with time and patience, I Have been doing 100% better! Family and friends Have been the most postive influence in my life, and my faith in God. The Neuerosurgeon I went to is doctor Morgan At Renown Medical Center In Reno, Nevada. Please have faith, and you will get through this, We DO know what you are going through! take care and good luck, and God bless you!
Arnold Chiari Malformation
I am about to have the surgery for this and my Dr. Morgan I have to admit I am a little scared to have it done but not wanting the migranes I will be having mine done @ Renown Medical in Reno as well any helpful thoughts?? I do put my faith in God's hands but this surgery has me a little on the edge of anxiety. So any helpful thoughts would be grateful.
Loyola Dr.
I see Dr. Anderson at Loyola University. He is wonderful! after dozens of doctors with no answers who just kept drugging me up on barbituates, he diagnosed the chiari. it's been under control with diamox and getting off depo provera, but returned three weeks ago after a fall with a serious injury to my eye. he is doing another mri in 4 weeks with another consult and talked to me today about the real possibility of the decompression surgery if the meds can't get it under control again this time. i am herniated just 5mm.
melissa
Chiari
Boy, are you ever right, about going to not only university hospitals, but also to neurosurgeons who have had university experience, as we did !!!
Our surgery went wonderfully ...
Take care,
Lynne
Post new comment