The Complexity of Arnold-Chiari Malformation
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
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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. |
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
Reoccurance of Symptoms
After 4-5 years of headaches, muscle weakness, vertigo, dizziness, stiffness in neck, sensitivity to light, etc., my doctor finally sent me to get an MRI on January 15, 2009 and two days later I recieved a diagnosis of Chiari Malformation. The report stated that low lying cerebellar tonsils extending approximately 18-20 mm below a somewhat stenotic foramen magnum. On May 14, 2009, I had posterior fossa decompression surgery and have been symptom free until recently (last 3 months). Now, I am having some of the symptoms. Has anyone else had reoccurance of symptoms after surgery? Please share!
Venisha
Melissa, I am very sorry for
Melissa,
I am very sorry for your complications and know them only too well.
For immediate relief try a grainfree diet for just one day to see
improvement in pain.
For further reference go to Dr.Jack Kruse's website and search
Chiari I Malformation and it will take you to "Do you have a grain
brain"
Dr. Kruse is a neurosurgeon who thinks outside the box.
Good luck............
Grain free diet
I have found a grain free diet helps with
managing symptoms of Chiari I
Malformation without being on
narcotic type pain killers.
Grain Free Diet
Hi Everyone,
I don't know if this will help you but I've found I can relieve
the symptoms of Chiari I via natural means without heavy
duty pain killers.
First I went gluten free but that was not enough. Going
grain free does alleviate symptoms. I must admit I do
have some corn and potatoes.
There is a book that gives bakery recipes using nut flours
called "Breaking the Viscious Cycle" by Elaine Gottshall.
Gut health directly related to brain health.
I hope this helps someone else,
Lynn M.
I wanted to know if chiari
I wanted to know if chiari type 1 can be caused from trauma like 2 car accidents for I never had pain like this before till I was in 2 car accidents. Now recent mri after all mri's being clean following accidents show 7mm and now this diagnosis. Can they be related or is this something that was going to happen to me regardless?
Chiari I and back surgery?
Hello, I have been diagnosed for 10 years . My herniation is near the c1 level. I also have a severe disc herniation at the c4 level, a bulging disk at c5 and 6 and three bulging discs at s1, L4-5. I need surgery for my neck and was wondering if anyone has had any experience with Chiari and spinal surgery? Thank you so much.
chiari surgery
Hi,
Hope you frgeoneel better soon. I had surgery in 2010 for Chiari type 1/2. My symptoms pre op were awful. Most people thought that I was suffering from depressio, attention grabbing......you name it, I had it, until I was diagnosed by RMI. The surgery was very uncomfortable and a bit scary but the hospital staff were great. It took me a few months to recover completely and I still have minor symptoms such as loss of sensation in my hands and feet but I function normally. I no longer have the crippling headaches, dizziness, difficulty swallowing and other hanicapping symptoms.
Since surgery my life has changed. I feel GOOOOOD for the first time in 20 years. If you have a good surgeon in who you feel confident I would say go for it. Chiari is so badly understood by society and if you have the oppurtunity to have a pain free life then you should really consider having surgery.
I hope it goes as well for you as it has for me but there is no reason why it wouldnt.
Good luck, Kate
Kelly, I am very sorry to
Kelly,
I am very sorry to learn of your complications and know only
too well your symptoms. I "manage" my symptoms through
natural means. Here they are:
* Be sure to drink plenty of water
* Physical therapy can alleviate pain and balance
problems, IF you are stable.
* A massage type pad (you can purchase) and put on a chair
alleviates pain/stiffness.
* Some type of limited mild physical exercises alleviates symptoms.
I only do when I have enough energy for 15-20 minutes.
I hope this helps you, Kelly.
Lynn M.
Acm
I woke up paralyzed from the t4 down in jan 2010 .. I had a syringomyelie on my t4 with a syrinx.after two years of pt I can walk again and after a multitude of tests they finally found a 5mm protrusion leading to my pos.diagnosis of acm 1. I am now pregnant and terrified of the complications Might face. I can't function without pain meds and although the docs try to reassure me that they are safer for the baby then the high blood pressure assc with my extreme pain I'm still scared. I had two children prior about ten years ago without comp. the drs want to do a csection which also scares me because they will put me completely under due to my spinal cord injury. I'm scared and worried is there anyone out there who can offer sum encouragement or experience? I have not had the corrective surgery yet.
Hi I was just reading your
Hi I was just reading your post I have just had a baby under general anesaestic I have acm1 and have not yet had decompression surgery I was diagnosed on 2010 and have had severe symptoms ever since,I've just had an appointment through to meet with my surgeon again which I'm terrified about,I've been through so much the past 9 months through the pregnancy and trying to cope with my chiari aswell it was really hard but my baby was born healthy at 38 weeks, which is a blessing as I took loads of medication for my head throughout the pregnancy I'm finding it hard now that I have a newborn and I have two other children and I'm trying to deal with my head so things aren't easy but I had a healthy baby and being put under wasn't as bad as I was expecting!
Chiari one
About a year ago I started getting bad headaches off and on. This continued thru the summer and I had talked to my Dr and they said possibly it was work related stress. I didn't agree with this. In late Nov. I went back to the Dr. and told them I felt like I was falling apart. During the last 5 or 6 months I also felt totally drained after my work schedule, which was 2 weeks of 12 hr shifts @ a remote site, then 2 weeks off. In Dec I got a chest cold while @ work and when I would cough it felt like the top of my head was going to blow off. In Jan I went to Emerg for hrs and wasn't leaving until I got a catscan. After the scan the hospital called me to have 2 follow up MRIs and Chiari one was diagnosed with 19mm. I also had balance issues, hoarsness, trouble breathing, swallowing issues with everything,as well as many other ones. In May/12 I've had my surgery with the removal of a piece of the base of my skull as well as removal of my C1 vertabrate. It has been a couple of trying weeks but I believe that some of my symptoms are subsiding. Having the surgery or not is an individuals choice. Being informed and having a knowledeable Neurosurgeon has well as the support of family and friends is very important. Good luck to all that face this. Stay Strong!!!!!!!!
Surgical Procedures
Many thanks for your indepth reply.
I will definitely keep this for future reference.
The trick is avoiding surgery if at all possible.
Too many complications.
Thank you,
Lynn
It depends which procedure
It depends which procedure you are having. There is a minimally invasive endoscopic transnasal procedure that can be done in some cases.
Posterior fossa decompression surgery is performed on adults with CM to create more space for the cerebellum and to relieve pressure on the spinal column. Surgery involves making an incision at the back of the head and removing a small portion of the bottom of the skull (and sometimes part of the spinal column) to correct the irregular bony structure. The neurosurgeon may use a procedure called electrocautery to shrink the cerebellar tonsils. This surgical technique involves destroying tissue with high-frequency electrical currents.
A related procedure, called a spinal laminectomy, involves the surgical removal of part of the arched, bony roof of the spinal canal (the lamina) to increase the size of the spinal canal and relieve pressure on the spinal cord and nerve roots.
The surgeon may also make an incision in the dura (the covering of the brain) to examine the brain and spinal cord. Additional tissue may be added to the dura to create more space for the flow of CSF.
Regards,
Jimmie O. Conover
Tampa personal injury lawyer
Return of symptoms and Chiari
Hi. My name is Lisa and I was diagnosed with Chiari 1 in 1998, after the birth of my second son. By 2003 it had grown to 8mm, on St. Patrick's Day of that year I was rushed to the hospital because I was walking into walls and was seeing double, mind you I had a 3rd son by now who was 2 years old. I was very sick had decompression surgery, had spinal meningitis a week after I was home, very sick again, and for the following year I was miserable, headaches Pain meds, dr's though I was crazy. I have been okay for 9 years, the symptoms started again. It worse, double vision
Vertigo headaches migraines, losing feeling in Arms and hands, incontiinence, I had an MRI and it said that I have a 3mm Chiari ectopia. I live in Chicago and I am seeing a Neurosurgeon at Rush tomorrow, I'm just trying to find ANYBODY who has been thru this or something similar or has had multiple surgeries, I also have bulging disc's right below the decompression. I just turned 42, I want to be a mom again not so
Someone who is always sick and on meds - just wanted to see if any of you had this happen to you- thanks so much. Lisa
had acm surgery 9 years ago also
I had surgery 9 years ago as well. My sysmtom are worst then before really bad vision, balance (i use to beable to flip and do cheerleading and gymnastics) my headache are worst than ever before, walking into walls, hard time seeing when driving, reading, and many other sysmptoms like memory and aving a hard time coming up with the right words to say or stopping in middle of sentence or starting in the middle of sentences. I have been going for oppciptal, neck and spinal c1 and c2-3 blocks at fist work for a few weeks now not working at all. I do get my children everywhere they need to go 13yrs and 15 yrs but at the end, once home that is all i can stand. i dont like taking pain medication due to addcition of alcohol in my family(i do not drink at all) i never thought it could come back, but heading to my neurosuregon again to have mri with cine to fnd out whats going on. Put I feel for you and know how yo feel when they say its all in your head there is nothing wrong (including my husband). If you have any suggestions for me please write back. I will be prayin for you.
Canadian Dr's
This is at Jacquie from Calgary. Dr Kassam is a brilliant Neurosurgeon in Ottawa, Canada. Just wanted to let you know.
Hi Jacquie, I was just dx in
Hi Jacquie, I was just dx in June and live in Calgary and waiting to see neurosurgeon. Did you see any in Calgary or did they refer you to Ottawa? I'm curious what your experience has been here and how you're doing after seeing dr in Ottawa
What's normal now?
I had Surgery in 2010 for a Chari 1 malformation. Recovery was okay and i'm alright now... but i do have a question: sometimes when i move neck it cracks and grates, like something grinding against the bones. And recently, like right before i typed this up, i had a crack in my neck, then pain shoot through the left side of my head. I don't know if that's normal or not, and i just wanted to know if anyone has any idea as to what is normal after the surgery... thanks.
Leland
I have been diagnosed for 20
I have been diagnosed for 20 years n had the surgery 2 1/2 years ago followed by an infection followed by the surgery again. I was never better till I fell 40 ft. (Classic cartoon fall) n landed right on my head. My symptoms returned with a vengeance!!! I have been treated Luke I'm nuts n kicked while down by dr's so much I refuse. To c a Dr. I have complications from scar tissue, bone fragments, n spinal fluid leaks to an aneurysm! I live each n every day in massive pain with nothing more than over the counter aide! I do this because if go to the Dr. 1 more time n get no results I'll need the nut house!! LOL wow that really got away from me. Yes I to have that pop followed by burning stabbing pain.its terrible, crippling pain!
is it back?
I first would like to say this blog came as a god send to me .I have a 16 yr daughter that was dx with ACM1 at 14 after having a seizure "out of the blue "She then had decompression within a few months of dx.For awhile she seemed to be doing better then the "episodes" started .typically early morning we would find her face down on the floor ,unable to wake her .she would sleep for hours and then have no recollection of the event.Our neurologist felt they were seizure activity ,even though EEG was inconclusive.,so every time it happenend her Topamax was increased.We finally took her off Topamax because it wasnt working ,and we felt like she was in a constant daze !the drop attacks stopped ,and basically her daily headaches were managable at a 4-5.Within the last 2 weeks she has experienced her anterior thighs going numb.She reports not being able to feel her legs and that the muscles feel like they are being pulled tight.when the numbness goes away they feel like jello and she struggles to walk.Prior to this she was having severe abd pain ,which of course several trips to the ED found nothing,until finally we took her to an OBGYN who did laproscopic surgery finding ALLEN MASTERS SYNDROME. She cried the other night stating "i just want to be normal I am tired of feeling sick" I HAVE TO FIND HER THE HELP SHE NEEDS, She dosent believe Dr can help her anymore,and I am frustrated when they tell me "the decompression is fixed so it cant be the Chiari " Well then what the hell is it ? As I read this blog I see so many of you with similar symptoms ,who all have ACM, surgery or not .My daughter is an athelete that I am slowly watching dwindle away.I have not taken her to the chiari institute yet ,but feel like that is my next step.I also want her to be able to talk to someone her own age who understands . .Thankyou for sharing this part of your life .I am so sorry for all of you who live with this pain daily .ACM SURVIVORS YOU ARE MY HERO AS YOU ENDURE TO THE END .....
northeast dr recommendation
Hi. I would like to recommend a doctor in Central New Jersey. Hs name is Dr. Steineke, and he works out of The Neuroscience Institute at John F Keneedy Medical Center in Edison, NJ. My daughter had her decompression surgery during the summer of 2012. We had seen 3 neurosurgeons, and found Dr. Steineke to have the most experience and a very nice bedside manner, which is so important when you are so nervous about what is happeneing to your child (or yourself). She is not even a year post decompression, so I can't say what she will be like in terms of any return of symptoms. What I can say is that the doctor is very knowledgable in Chiari and was able to answer all of my questions. It makes me feel so bad to read how doctors are ignoring your symptoms. After my daughter's surgery, she was such a different child! She is happier and has a freedom of movement that she never had before. All we can think about was how bad she must have felt before surgery, and how it had affected somany areas of her life that none of us, including my daughter, had realized.
I wish you all well. Please consider calling Dr. Steineke. Even if he is not that close to where you are, it may be worth a trip. When my daughter was first diagnosed, we always thought that we would have to travel to Chicago or Long Island for her surgery. I believe that, if you can mangae the time and cost, it will be worth the trip to New Jersey to see him.
Acm1
Hello I two had surgery Sept 19 2008, Dr. Steineke also did my surgery, he is a great NS and great bedside manner. I had seen other NS but like Dr. Steineke better. But right after recovery my symptoms return, headache, vision, balance, numbness in arm, neck pain and stiffness, I past out without warning. I been told by Dr. Steineke and other dr. The surgery been a success nothing is wrong. MRI ans EEG come back normal. All these dr. wants is to put me on medication that knock me out or don't work. When med don't work my dr. Tells me it works on my other patience. I tell him so what it don't work for me. I been living with chronic pain and its nothing these dr. Are able to do for me.
dear Michelle
Hey Michelle I am a 14 year old who was just diagnosed with acm I I was looking all over Google to see if I was going to be alright I was scared out of my mind and im really nervous about this aswell
to Michelle
I am so sorry to hear your daughter is going through this - it is horrible to see your child in pain, or watch as the activity they have a passion for slip away.
My son is now 18, had decompression of 17 mm ACM at age 15. Initially he seemed to do well, the neurosurgeon assured us it was "fixed". He also said this to our primary doctor - my son was a wrestler at the time he was diagnosed and had to end his season. We were told he could return to it after the surgery. Despite my apprehensions, the doctors said it was fixed so I let him wrestle again. He went to a 3 day camp - he didn't make it through the first day. He was having shock like numbness and tingling, and a bad headache. There went the season. He had a spinal to check pressure, but they didn't have lay flat long enough and he developed a horrific headache every time he was upright for more than 10 minutes. He tried to go school but was vomitting from the pain. Children's ER sent him home saying it was a "migraine". Put him on a Topamax cocktail - which helped at first. His symptoms were better for awhile,but off and on problems. Again, every single time we took it to the doctors, it was "not from the chiari, that was fixed". We were basically looked at as hypochondriacs at times with no improvement, other than his symptoms fluctuating. Last month, he was at work and called me to come pick him up, he had recently been having problems with severe pressure in the back of his neck and head, balance problems, but at this point it grew worse. When I picked him up, he was having trouble finding words, slow responses to questions, speech was very slow, "out of it", felt like he wasn't walking right etc.... took him to what is considered one of the best hospitals in the area, teaching hospital etc.. they said "migraines" and sent us home with Topamax prescription which I tossed out. They could not even SPELL Chiari, did not really know what it was. I started the neurosurgeon search again - THANKFULLY we have answers, although we could have hoped for better news. What we have is a failed Chiari surgery. We KNEW it was Chiari - the neuro specializes in Chiari and belives it may be scar tissue from the original surgery. He will be doing full head and neck MRI soon, is wearing a cervical collar starting tomorrow 24/7. To determine, after scan, if it is scar tissue, they will have to re operate to try to remove it. He is currently a weightlifter and cannot lift until this is resolved.
I hate it when doctors assume it has been "FIXED" - they rule it out automatically without considering it even. Or label it something else. KEEP SEARCHING AND PUSHING FOR ANSWERS - it is a long battel, but worth it in the end. It is my understanding that Chiari institute (NY) doesn't bill your insurance company - so definately check that, although I could be misunderstanding that. There are many other specialists in this area, you may want to try tome of the university hospitals or teaching hospitals, pediatric specialists etc, whatever you have access to. I know this is long, but my heart goes out to you and your daughter. Especially when they are athletes and can no longer participate - or any activities that are so important to children. Good luck to you!
I am sorry to hear of your
I am sorry to hear of your son's difficulties.
I do believe there is a link between food sensitivities
and aggravation of acm. It appears to cause more
inflammation and that's what we are trying to keep
to a minimum.
Lynn
gluten free
Sorry forgot to say is there a known link between acm and celiac disease
my son diagnoised at 2 years old
Hi my son has acm and was operated on at 2 1/2 to remove tumors from his spine. He suffers what he calls funny eye and pins and needles in his wrist. He is now 8 yrs oldand recently had another tumor removed from his head. No known link 2 his tumors or his acm. My question is he has now been diagnosed with lactose and fructose intolerence. Is there a known link between this and the acm. Also my brother has always had an odd shaped; bone structure; head and he has scoliosis. Do u think my brother and son have a hereditry link. Thanks in advance 4 your opinions. Tash and her son :-)
Anti-inflammation Diet
There seems to be a connection between
inflammation and Chiari. Follow an
anti-inflammation diet, ie lots of fruits and
veges to keep down inflammation.
Lynn
Ntural Suggestions
Patricia,
Thank you for your reply.
Sorry to learn of your daughters difficulties.
From what I've learned there is a genetic link
to this Chiari. Important to know before having
children.
Dieticians don't have a clue. Here are other
things I've learned. There is a strong link between
this Chiari and gluten sensitivity. Since there are
many gluten free products available, this is not so
hard to give up. Being as active as she can be
under the circumstances, keeps things circulating
in the brain. Get loads of rest. Also, see www.wacma
alleviation methods for more help.
Lynn
Chiari
My daughter 26 yrs has been diagnosed with Chiaria after brain and spinal MRIs We are seeing a Neurosurgeon on Harley Street, London tomorrow re treatment. She has had all the classic symptons. Mri shows lots of fluid build up in brain and blockages. Its frightening to read everything but hopefully the op will provide a cure. Am interested in all the things that we can do as well, reduce salt intake, drink loads of water, not eating late at night, supplements, acupuncture, will do anything. Would it be worthwhile seeing a dietitian after surgery
She was told never to have a child by natural delivery
Patricia, England
Dr. Carl Balog
Hi, You post an important treatment article. I also need your treatment immediately.
Thanks
Aliza Brienty
"Carl Balog MD"
4mm's of h3ll
This disorder is enough to make you think you're dying. I didn't think I'd live to see 30, and all they did was tell me it was "stress", which never added up but they never listened.
Now that I understand more about it, through research and no thanks to my doctors, I have more hope.
Age symptoms appeared: Mild -- 14. Moderate -- 22. Severe -- 26.
Main symptoms: visual disturbances, headache (esp after exertion), stiff neck, head throbbing upon standing, anxiety, intolerance to loud noises, hearing voice echo, twitching, periods of muscle locking, pins/needles in hands/feet, etc.
MRI: 4mm herniation w/ a couple associated disorders
Thanks everyone for posting. Together we are stronger.
Sincerely,
- Seeking Chiari-sensitive doc near DC
post surgical twitch
April,
I was wondering if you had decompression surgery. My son had it six months ago. Following the surgery he had uncontrolled hiccups, until he was prescribed meds to stop them. Now 6 months post surgical, he is having restless leg syndrome, hiccups and gagging. I noticed in your post that twitches were a symptom of yours. Does this occur all the time or at night? Also, do you have syrinx (fluid on the spine).
Thanks..and hope you find someone to help you.
Sincerly,
Concerned Mom
Dr. Thomas Milhorat's 1999 Chiari I Redefined
Please google the above referenced study.
In answer to your reply, may the above
report help in your accident. This is a landmark study.
See Page 2 of 27 under Abstracts: "89 patients
cited trauma as precipitating event".
Look thoroughly through this study for perhaps
further information to help your case.
thanks
Thanks Lynn for your reply... In my situation however, the MRI does show chosen and I do have symptoms.however a nystagmus test and balance tests prove negative. have some individuals experienced the same results with tests? It seems that doctors farewell, art least with certain neurologists that as long a there is enough CDs fluid and certain nystagmus tests prove negative, a certain amount of doctors feel that the condition did not become symptomatic after the accident. again my question is, can people suffer from these conditions even though balance and nystagmus tests prove
s negative.
P.S. To my last post. I
P.S. To my last post. I have the exact situation you describe
re Chiari made symptomatic.
Yes, you can be symptomatic
Yes, you can be symptomatic and it does not show
up on an MRI. I was in a car accident which made
it symptomatic.
help
Can someone with chiari who is symptomatic still suffer from symptoms even though mri shows no cfs block or syrinxs.
Thank you.
Delivery after having decompression surgery?
Hi,
I was diagnosed as having a Chairi I Malformation in 2005 and had a cerebral decompression soon after. I am now 8 months pregnant and hoping to have a normal delivery but no one can give me an answer to whether or not that would be a good idea. So I'm just wondering if anyone has had a baby via vaginal delivery after having a decompression and if there were any complications?
Many Thanks, Ashley
Chiari and pregnancy
Hi Ashley,
I would get a C-section. I did not know I had Chiari until after I had my children. After my first child, I had so many problems with my rt. hand that I had to go to physical therapy to use it again...and other things felt funny with my head, neck and spine.
Then after my second child....I was in labor until I got up to 8 cm's dilated...stupid nurse had no clue...and I almost had my child naturally, though I signed for an epidural!! I had back to back contractions and felt a ton of pressure on my head and lost my vision during then...and almost lost my mind from so much pain. I was shaking out of control from the pain when the antes. finally tried to put the epidural in my spine. My husband had to hold me tight.
I truly believe that experienced worsened my situation with Chiari...all that pressure and my heart beating so fast. It took 7 years for me to get my Dr. to give me an MRI...due to constant complaining about the back of my head and headaches to him, plus just many diff. neurologic issues that seemed weird. I was diagnosed with Chiari and have a 6-7mm herniation.
When I told my Ob/Gyn about it, she said if they had known about the Chiari and I, they would have done a C-section in both of my deliveries.....I don't know, I'm not a Dr., but I do know that labor can put alot of strain on a woman with Chiari....and even after surgery, I would be really afraid to let my body undergo such stress.
Sincerely,
Julia
Pregnancy
I agree with Julia. I was diagnosed with ACM 15 years ago, and was told by my most recent neurologist that I should not have anymore babies, especially naturally. She explained that it puts too much pressure on the body, including the herniation. Interestingly enough, I was also told that if I can make it through menopause without having surgery I may never need it. She explained that with age, our tissues and bone mass shrink, and that will leave extra room. I have been to 5 different neurologists, and have never been told that before.
Jen
Dolres, I understand how you
Dolres,
I understand how you feel. In the beginning its very overwhelming.
No Chiari I does not turn into Chiari II. Surgery not always necessary
but its important to see a NS experienced in these surgeries.
For a starter, see www.mayoclinic.com and search Chiari
Malformation for a good overview. Also google: World Arnold
Chiari Association for an accredited Chiari doctor in your area.
You and your daughter are in my prayers,
Maureen
Chiari I Malformation
Hi,
I live in Northern Florida and was wondering if anyone has found
a competent neurosurgeon in Jacksonville, Florida that has
done their decompression surgery and they had great success.
I have gone the natural route in treating symptoms and share
with you what has allleviated the situation:
* Drinking water - Can help circulate CSF
* If you have to eat close to bedtime, take acidopholis. You
won't feel terrible when you wake up.
* Vitamin C also helps for the above situation when taken
before bed.
* For pain - Feldenkrais foot exercises. No effort and can
be done laying or sitting down. See book RELAXERCISE
by Dr. Moshe Feldernkrais
* Classical music by Beethoven. Google Beethoven classical
music on youtube. This alleviates stress.
Hope this helps someone out there who wants to take no meds.
arnold chiari
Lynn M,
I had surgery at Mayo Clinic Jacksonville. It is important to have surgery to stop the progression
of the symptoms. The surgery went well.
Mary Jo
chiari 1 doctor
Hi Mary Jo-
I am currently using Mayo for my Chiari 1 however, the doctors that they currently have me seeing are more vascular specialists and are trying to tell me that my Chiari is asymptomatic even though I have almost all the classic symptoms of symptomatic including seizures, tremors, sleeplessness, pain in joints and muscles, hyperflexibility, severe migraines, vision issues, etc. Who was your doctor and how big was your herniation?
Thanks!
Amanda
chiari 1 malformation
I went to my local er on january 12th. I was hallucinating, colors and flashy black spots, so severe it scared me to death! My neck, shoulders and head hurt so bad...I have an extremely high pain tolerance by the way. They took an ray and saw that I had a slight herniation in my cervical spine. But couldn't tell me anything else. Hospital gave me Valium and ultram. I followed up with my family doctor two days later and immediately schedule MRI of my neck and brain. A previous MRI, bout a yr ago, revealed a n adeoma on my pituitary gland...these mri's that were performed recently didn't have contrast. But they revealed 5mm brain herniation from cerebellar tonsil right side, with a lesion as well. The neck MRI stated the same and also showed a lesion on my thyroid. So I have a lesion on pituitary, brain, and thyroid! What is goin on!? My family doctor s GD awful and has been no help. He completely omitted the chiari results to me, thank god I ask for copies of everything...how long have I been walking around like this? I have had such a laundry list of symptoms for years...
I have a spine specialist appointment tomorrow and an endocrinologist on Wednesday.
My biggest complaint would have to be the extreme dizziness, numbness thru out my body, constipation, dry mouth, sensitivity to temperatures, head pressure, headaches or migraines, my right eye feels droopy, I constantly squint, my ears always ring n constantly feel full! Insomnia s a problem too!
Tired of feeling like poopy!
Wish me luck...willing to accept any feedback.
Paula :) Luv hang in there
Paula :)
Luv hang in there don’t stop until you get the answers that you need.... I'm just back to work today and although I still have no "real" answers I am hopeful thanks to this form and my friends and fam... I will keep you in my prayers and you will get the answers you need
Shannon
my daughter.
i just found out my 14 year old daughter has type 1 arnold chiari, donthave any real answers yet , can this turn into different stages?? does she absolutely need surgery?? i couldnt sleep laST NIGHT JUST THINKING ABOUT ALL THIS, IS THIS COMMON IN CHILDREN AS WELL? WE DONT HAVE OUR FOLLOW UP TILL NEXT WEEK.. SO I FEEL SO LOST PLEASE KEEP US IN YOUR PRAYERS. AND GOD BLESS ALL THOSE WHO SUFFER FROM THIS DISEASE.
Hopefully, by now u have some
Hopefully, by now u have some answers, but just in case don't worry. Chiari 1 doesn't turn into the other types. I'm 41 & been having issues because of this almost my whole life but just diagnosed this last year. I recommend research. Educate yourself so u can be her advocate. I wish u & your daughter the best.
New to this and scared
I have read may of the post on here and thanks for making me feel that I am NOT alone! In May of 2011 I was at work when I had what I thought to be a stroke turns out it was a TIA (I lost the use of my left side and my speech) after the battery of test CT blood test ect. the Dr told me they didn't know what was wrong ask me about stress the "go to" when doctors can't find a answer. I went hm still frustrated and undiagnosed saw my dr who put me on blood pressure meds. Fast forward to last Friday 1/20/12 once again I was at work and fell succumb to a TIA (same as before lost left side functions and speech) the EMT's came to find me with a BP of 175/189 I'm taken to the hospital where I'm admitted and retested CT, blood work and MRI to be told nope not a stroke (btw thank you God!) ok after 3 days in the hospital (thinking am I crazy?!) my strenght was slowly returning along with my speech and as I sat in the hospital room I had ANOTHER! TIA!? more blood work CT and moved to ICU for two days... I have seen every Neurologist in that hospital... they sent the Pysch Dr they ALL said "I don't know"... We have learned what it is NOT just not what it is! So I laid in my third hospital bed in 5days I prayed and ask God to show us what this is and I found this site.
Does anyone else feel the onset of the TIA?... it feels like someone "unplugged" my nervous system or my brain and it starts like the left side of my face is touching a old tube tv after it's turned off that static moves down my left side until it is "powerless"
Any feedback is appreciated thank you and God bless
Shannon
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