The Complexity of Arnold-Chiari Malformation
Biology 202
1999 Second Web Reports
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The Complexity of Arnold-Chiari Malformation
Nicki Lynn Pollock
To the medical doctor, Arnold-Chiari Malformation, which may have a genetic link, is characterized by a small or misshapen posterior fossa (the depression in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal resulting in a multitude of sensory-motor problems and even some autonomous malfunctions (1). These many symptoms can come in a variety of forms which often makes a clinical diagnosis difficult. To the patient this disorder can present not only physical difficulties but also mental distress. Treatment options and their success rates vary widely, and proponents of the cause are demanding more recognition, research, and success. The study of Arnold-Chiari malformations can lead to additional questions and new understandings about the I-function, sensory-motor input/output paths and the general make-up of the brain and nervous system, but a complete understanding of the disorder may be a long time coming.Impairment and sometimes loss of motor control of the body and its extremities is one of the many effects of this disorder. Patients may complain of headaches, neck pain, coughing, sneezing, dizziness, vertigo, disequilibrium, muscle weakness, balance problems, and loss of fine motor control (1). The senses (hearing, sight, smell etc.) may also be affected in deleterious ways. On can have blurred vision, decreased sensation of limbs, unable to locate them without looking, decreased sense of taste, ringing of the ears etc. (2).
Two ideas about the nervous system that can be better understood from these observations are the concepts of having and locating the I-function. It seems that the I-function here is very often affected in terms of voluntary movement. A person with Arnold-Chiari malformation who has lost the feeling in and control of his arm for example will not be able to move it even upon someone's request and his or her own desire to do so. Some use of the I-function is definitely impaired. However, these observations do not seem to necessarily imply that some part of the I-function was damaged, because it may very well be located elsewhere- connections may have simply been lost. A person with Arnold-Chiari can still think and have a sense of self, but somehow can not connect with the various body parts that can be affected. Some uses and pathways of the I-function can be understood, but the exact location of it remains vague.
A lack of sensory input can also provide clues about pathways within the nervous system. Depending on the severity and specific location of the Chiari malformation different senses may be affected. Again, the location of where this information is processed can not be determined for sure from these observations alone. It is obvious that the pathway needed for sensory information to travel is indeed affected but not the ultimate processing center itself.
Recently, diagnosing this disorder has become relatively easier with the advent of the MRI (magnetic resonance imaging) so that doctors and patients no longer have to rely on a symptom-based diagnosis which was troublesome for both (3). The symptoms vary widely and encompass many parts of the body. Many deemed Arnold-Chiari sufferers the victims of some psychosomatic disease before the biological nature of the disorder was understood (5). Now, with the possibility of having a genetic predisposition for Chiari and the early detection devices available, one can more easily be diagnosed properly (2).
There are both medical and non-medical ways to treat Arnold-Chiari malformations. When symptoms develop, patients should seek a doctor's advice to consider a posterior fossa and upper cervical decompression. This procedure can provide more room around the lower brainstem and promotes improved neurologic functioning, though it is not a guaranteed solution (3). Patients may also benefit from various and symptom appropriate forms of physical and occupational therapy. Some patients also explore non-traditional options such as herbal therapy, acupuncture and others (5).
The symptomology of Arnold-Chiari malformations can lead to many useful observations of the pathways used by the nervous system to maintain control and awareness of the body in terms of the I-function and sensory-motor abilities. However, due to this large range of symptoms and the fact that current attempts to treat them all are not always successful, there may be other things going on in other areas of the nervous system which contribute to the overall effect of Chiari. The situation at the base of the skull, where the malformations are readily noticeable and are thought to be the cause, may be more complicated then believed or known at the time. As always, a better understanding of what is actually happening in patients with Arnold-Chiari malformation is needed.
WWW Sources
1)American Syringomyelia Alliance Project Inc.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
Arnold Chiari/Von Willebrands/ Occipital Neuralgia
I was diagnosed with ACM in 1999 and was scheduled for surgery in 1/00 when the routine blood work showed that I have Von Willebrands, a blood clotting disorder and they had to post-pone my surgery until Hemotology could get involved. I was able to have the ACM surgery in March of 2000 with the help of a med called DDAVP, it replaced the clotting factor that my body is lacking.
I did well for a while, but am now having nonstop headaches/migraines. A pain therapist is calling it Occipital Neuralgia, stating that the arthritis that has built up in the surgery site has caused the occipital nerves in the back of my neck to become pinched, which is causing these unbeleivable headachs that start in the back of my neck with a burning sensation and wrap around the sides of my head and into the back of my eyes.
I am trying trigger point and cervical facet joint injections to help releive the pain, (which are not fun) but it is only working for couple of days rather than a couple of weeks/months. The last facet joint injection caused such an incredible migraine that I ended up getting an ambulance ride to the ER. (Where, by the way, they think I am only there for the dilauded...ahhh!!)
I can't stand the pain and don't know what to do. I'm ready to jump back under the knife as long as it will releive this pain.
Any one out there have a similar experience?
Kim - Rhode Island
pain
After reading this post It sounds like a passage out of my life.
I had decommression surgery in March of 09. I live in Kelowna B.C Canada. I am an RN at our cancer agency, giving chemo and working with Oncologists. I have been struggling to get back to work for sometime now. I had injections around my incision site at the end of October for occipital neuralgia pain causing headaches that cause a pinching to the nerves and bring on a migraine type headache. My neurologist claims that it is just the muscles that are inflammed from surgery and will settle eventually but I may need more steroidal injections depending on how long these ones last...unfortunatley I can feel the pain coming back.
I am on Indomethacin and flexeril for pain, does anyone know of anything better, none narcotic.
As for more surgery,probably not, no one seems to have enough confidence that this will help the pain, and with scar tissue and arthritis that comes with trauma to the area I think I will settle with what pain I have, unless anyone can convince me otherwise.
hi i was told i had chiari
hi i was told i had chiari one malformation in aug of 2008. i thought i was having headache because i was in a 4 wheeling accident in 2006 but when thing got bad i went to the e.r 15 time for the headache and no doc gave me a mri. i was in pain for a year and a half i went to my family doc and he order a mri and found the chiari and order me to go to john hospkin. the doc i seen told me i had to have sugery or thing are going to get bad. i had surgery on aug 18 2009 at john hopskin in balto md. thing went good when i was on the table and after the sugery. i was not having headaches for a month but now i am getting them back they are not bad but i am scared they get bad. i have asked my doc is this normal and he keep saying yes u are still healing but i had one the other day and i was not able to holded a cup. that is one of thing i was not able to do before. if you have had sugery for chiari please help are thing going to get bad before they get good. think you for your time
I was diagnosed with Arnold
I was diagnosed with Arnold Chiari during a routine MRI for dizziness about 3 years ago. I apparently was born with it but it got worse as I aged. Now I have severe neck pain and shoulder pain radiating from the skull. I understand that there are 5 phases to the progression of the disease. I was told that I am at one and five is fatal in most cases. I am also told that there is no cure except for surgery but that the surgery does not always take. What other options are available besides physical therapy and a chiropractor?
Whats going to happen?
I got diagnosed with ACM last december, and going back into hospital again in two weeks, and have gotten worse in the past year, I have been on diamox which have kind of worked, but my back,neck,along my shoulders,and spine are so sore all the time, i find it hard to travel in the car for a long time, I sometimes have blured vision,and my hearing had been going funny as in all of a sudden everything goes very very quiet when it was extremely loud beforehand(hope you get what I mean). The headaches are not so frequent but when I do have them they are very very nasty. Its so frustrating Im pretty sure they will put me in for surgery, can someone tell me what happens in surgery and all the information that comes with it. Ive gotten myself into a bit of a tissy over this and just need peace of mind, hmmm now thats easy enough to say ha ha.
What to do with my Chiari?
I am now 17 years old, several years ago my mom had been diagnosed and then I was too. She actually has had surgery, I haven't yet. At the time she was seeing Dr. Oro( greatest Dr. in Missouri for this )but he moved to colorado. Now I feel my symptoms are getting worse im weak all day every day I use to have perfect vision now I can't see past three inches of my face without glasses, my headaches are constant all day every day Litterally, often my vision is blurry and my vision goes black for a few seconds often, I was diagnosed deppresssed and anxiety which a few days ago I found out Chiari can cause that too. I just feel terrible all the time mentally and physically. I don't know what to do or how to fix my self. As i'm writing this, i'm feeling severee pressure in the back of my head and i'm dizzy.(normal for me). My mom has gotten worse too and she has cancer too, so I don't know how to fix myself. Anyone know who's the best specialist in MO?
chiari
I looked for chiari specialists in MO, found none, but is DR looks closest?http://www.chiariconnectioninternational.com/map.html
Dr. Marc Lenearts
OU Medical Center
Oklahoma City, OK 73104
405-271-3635 405-271-3635
Jessica: ja_mccoy@cox.net
I am very sorry to hear both you and your mom are suffering with this. And now your mom has cancer too? What other famly support do you two have? My daughter has had one decompression surgery already, we are looking at second any time now/ I know how much my support is needed, it sonds like both you AND your mom need support, I sincerely hope there is someone in your lives that can help you two get though this rough time in life. I am a willing ear if you need to talk.
about your Chiari
Hi,
I also have Chiari an have yet been brave enough to get the surgery but like you my symptoms have also been getting worse lately. I would not put yours off any longer though if it were me and I was losing my vision I would not put it off for another day. You don't want to cause any permanent damage. I would call Dr. Oro in Colorado and ask him to recommend someone for you in MO. I am sure he would know a good one. My prayers are with you and your mom. Let me know you make out.
Jenn
Chiari Malformation Type 1 and St. Johns Wort
I'm 31 and was diagnosed with Chiari Malformation Type 1 about two and a half years ago. I often felt like my head was in a fog and my mind wasn't as sharp as it used to be. Among other minor symptoms I've had lower back pain for months. Just over a month ago my symptoms got a lot worse. First it begain with the back of my head going numb if I arched my back. It has since progressed to numbness in my feet,legs, arms, hands, upper back, buttox, face, and most recently my tongue. (A loss of coordination in my hands as well). On my worst days an overall sensation of weakness and almost a drunken feeling overcomes me. I'm concerned since it seemed to come on very quickly. (I'm waiting to get another MRI). For unrelated reasons I have been taking 300-600mg of St. Johns Wort daily for almost a year. My family doctor doesn't think that has anything to do with it and see's no reason for me to stop taking it but I'm wondering if it is somehow making it worse. Does anyone know if there is a connection between St. Johns Wort and worsening conditions of Chiari Malformations? Does anyone have any recomendations on how I can stop or slow down the progression of the CMF? I'm in Calgary Canada and having a hard time finding local resources....Thanks.
Chiari Malformation
I know your struggle.Hopingly you may help me.I live in Calgary,also.I find no support for this disease.My desent is 8mm but the neurologist does not feel it should cause this much side effects. Have you been able to get help in Calgary if so Where This disease controls my life -Some days I cannot drive or travel by car-walking is sometimes effected, for I walk as if intoxicated.
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.
Surgeons
I had a great Neurosurgeon in Victoria. Dr.Jon Sun. He took a chance and your case sounds a lot like mine.
Chiari surgeons
Hi, I saw your posting. My partner had decompression surgery in 2004 in Vancouver by a Dr. Michael Boyd. He did a great job. Vancouver Genral Hospital.
Good luck
Donna
I also live in Alberta and
I also live in Alberta and have a chiari malformation of 5mm. I cannot seem to find anyone who can help me, and the neurolohist seems to be puzzled and keeps telling me that there has to be something else wrong, because he seems to think that it is just incidental that I have chiari malformation and all these symptoms. ARGH so frustrating! Have you found any help with a nerosurgeon at all?
Live in Canada Too
I live in Saskatchewan but had my surgery done in Alberta by Dr. John Hurlbert four years ago. I researched on the net and found that he was one of the very few Neurosurgeons in Canada, which is why I went there. I had a 6mm herniation, syringomyelia, epilepsy, scoliosis, and had been previously shunted for hydrocephalus. Don't let that deter you though. Please keep looking for a doc. Not everyone looks at this the same. There are many many symptoms to this and one symptom might be difficult to handle for one person but the same symptom might be intolerable to another.
My symptoms have returned along with a few more. This is not to say that the surgery was done wrong or shouldn't have been done at all. Dr. Hurlbert was a VERY good Doctor to talk with. He took LOTS of time and spoke in layman's terms. Find a doc that you are comfortable with. I wrote Dr. Hurlbert a personal letter all on my own and he answered it back. How many docs would do that.
I believe that my age and the fact that I have had this since birth but was not diagnosed for years and the other added issue I deal with have a lot to do with symptoms returning. But don't give up. I have made contact with a few internet friends through the internet on my search. It's a great way to get advice and really the only way to find people who understand. Friends and family really try but they just cannot unless they walk in your shoes.
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?
ACM relief
I was diagnosed with Chiari in June, 2007 when I was 19. I had the same symptoms as you. I was having terrible headaches and dizziness that caused nausea and vomiting. I had neck pain and I lost a lot of weight and was just physical exhausted and weak. It interfered with my entire life. I struggled with school and work and the only thing I wanted to do was come home sleep. My whole body just felt awful. I didn't have a primary doctor but finally when it got bad enough I went to the ER and they told me it was hormones from my birth control. To me that made no sense. But I suffered through it for a few more weeks. I tried everything over the counter to relieve me somewhat and nothing worked so I went back in and they gave me an injection of pain and nausea medicine which gave me temporary relief but with work and school I couldn't take medicine like that and didn't want to. I made an appt with whatever doctor could get me in the quickest and the next day I saw a wonderful doctor. I saw in an earlier post about a dead give away that was the same as me. She had me walk heel to toe to the door and back, had me touch my finger to my nose, and then had a tongue blade all the way down the back of my throat and I had no gag reflex. I didn't even realize it. So she schedule an immediate MRI and found the Chiari. My Chiari was 8mm and she referred me to a neurologist. He wasn't the most experienced with Chiari so he was going to refer me to another neurologist and I requested to be referred to Dr. Stroink in Bloomington, IL. My mom was also diagnosed with Chiari and she had the decompression surgery and Dr. Stroink did it and was amazing. She used to do the Chiari decompression surgery on infants before adults. I ended up going through with the decompression surgery in January of 2009. She basically told me that I was already having symptoms bad enough to have the surgery in question so it was only a matter of time before I would have to have it no matter what. It was definitely a painful surgery and a rough recovery. For the first three months I can't even express how much better I felt. I felt like a completely different person. I had a different personality everyone said! Unfortunately the headaches did come back BUT they were not nearly as severe or often which is a plus! After many more appointments with her she diagnosed me with migraines also and said that I was most likely having two seperate headaches before- one from the Chiari and one from migraines. Apparently this is pretty common from what I've heard. Migraines also cause the nausea and vomiting too tho. I would most definitely recommend the surgery if your symptoms are bad though. You seem to be in the same situation as me. I just wanted a little relief because I was so miserable and it takes over your whole life. I was basically told though that if you have bad symptoms now that they'll really only get worse and you'll need the surgery eventually anyways. Other than that I found no other relief. I wish you luck and you have my sympathy!
Fort Myers neurosurgeon
Hi Tracy. Yes, I had these headaches on and off most of my life along with occasional bouts of synchope. Hurt so bad I would vomit which made the pain surge which made me vomit etc... My mother took me to the ER once (I was 28), because I scared her so bad - couldn't function, had two children. I got a muscle relaxant shot in my backside which did the trick for the moment. No diagnosis.
Here's the important part: the sporadic pain episodes grew further apart over the course of 15 years or so but then something else happened rather suddenly; late February, 2008, I fell out of my chair while working alone in my office in the wee hours of the morning. I'd been suffering extreme fatigue for several days but was also on chemo drugs at the time so I thought this symptom was from the chemical treatment. The symptoms got worse and worse for several days. I felt as if I were falling all the time, even when lying perfectly still. I was so sure it was connected to the chemo that I went against my doctors order and stopped taking them. I was SO frustrated - no one could figure out what was wrong! Then the headaches came back. I was in the emergency room of two different hospitals and saw multitudes of doctors that thought I had 1)a drug/alcohol problem (I was dizzy all the time, staggered, and had severe tremors in my hands) 2) major depression (this was true after a while) 3)psychosomatic illness 4)pregnancy (was tested three times in the space of about a week even though I hadn't had sex, lol) 5)virus, 6)epilepsy (I'd lost control of my right side and temporarily of both legs - they didn't feel like they were mine, I had what looked like convulsions in the ER) etc... I saw two neurologists, one in the hospital and one as soon as I got out the second time. The second looked at my MRI, saw a single syringomyelia just below C2 but said it looked old. Never ordered an MRI of the whole spine. Also, one could see that all four ventricles appeared to be much larger than they should be. He said this was likely due to an accident I'd had when I was 4 - 39 years earlier. He complained that I was talking too loud and he was offended by that - seriously, in front of my children and spouse. I didn't even realize I was doing it - I had severe tinnitus (ringing in the ears).
Then I made an appointment on my own with a neurosurgeon- Dr. Alvarez (Fort Myers). His assistant saw me on a really good day. I walked in on my own. She had me walk across the room heel/toe, touch my nose, and then the dead give away: she stuck a large swab all the way down my throat and I had no gag reflex at all.
I had surgery three days later. A month after the symptoms started, I was finally getting some help and at that point, I was more than willing to take the risk of having part of my skull removed.
In the month that it took to get a proper diagnosis, all the time in the hospitals from the two ER visits (one which ended up in a three day admittance for observation), and the recovery after surgery, the Dilaudid paralyzed my vagus nerve and I ended up with gastroparesis - frozen stomach. I couldn't eat. I lost 30 lbs. before I started to rebound. It took a solid six months to recover to a point of being safely ambulatory.
Naturally, I lost my job. Had to cash in my retirement to pay the medical bills. On the verge of losing the house. Point: it might not be a bad idea to at least consider surgery now.
It has now been a year and four months post surgery for me. My slow recovery is likely connected to an underlying health issue but it wasn't easy. And STILL, I would recommend the surgery. I have a really stiff neck and get headaches still from trying to bend and hold my head at certain angles but girl, it was so worth it. Hurts to jump or if I step off a curb/step really hard. No more roller coasters. :-(
I've lost some memory.
Strangely, not long after surgery, I got really bad joint pain that fit the symptoms of Rheumatoid Arthritis to a T. I noticed a gentleman commenting earlier that he had RA right after his surgery. I tested negative for the Rheumatoid factor. Again, no idea what the problem is or what, if any, the connection is.
I would recommend Alvarez any day. He is a highly rated surgeon and a gentleman.
Good luck,
Ruth
chi one
I had the surgery in o5 and once again am in the same boat as before
I have have had several mri's all are revealing that it is back I am trying to figure out why. the decompression surgery, that was not fun and have done all that was told to me to do Its hard to work wheather sitting or standing,but then you know all that, i was informed that Emery in Atlanta has the resources for us in this area ,I had surgery in Washing D.C. Thats where I was sent to. Since we are close in miles so to speak maybe we can work on this together i have taken toradol,that can help some,excedrine migraine works good,and i have taken skelaktin a muscle relaxor at night But you would think that you have the surgery to get rid of all this and here i am back with the same. The surgery did help alot it was scarey but dont think about what they are doing dont have them tell ya everything untill after and make sure you really check the surgeon out there are not that many docs that have done this Dr.O Karim in Virgina is one of the best in the U.S. ways to go but hey its your head! Do it over yes I can function where as before the surgery it was bad I did not know it could come back though
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
I have recently been
I have recently been diagnosed with Chairi I. I have had headaches/pressure in the temporal region, right above my right eye. I have tried everything even Toradol and all it did was make me feel like I was on heavy drugs and made my headaches worse. The only relief I get is by taking Diamox 4 times a day to get rid of the excess water, and then when I still get head pain I take an Alieve along with an Imitrex and that get rid of the pain for a day. If it was not for my Imitrex I would of went crazy a long time ago. I am just waiting for authorization from Insurance to see a nerosurgeon. Wish you lots of luck
Use of diamox and other vasculators for relief of chiari symptom
This is a copy out on the part of any physician, whether he be in the ER or outside of the ER, meaning a specilities that deal with this terrible congential birth defect called ACM.
It takes PAIN MEDICATIONS, I will not name them here, but SCHEDULE II. If you are to have any quality of life, you must have these type of drugs. THE DEA is an obstacle, and they are hell bent on keeping the drugs out of the hands of the chiari patients, simply because we are grouped into the whole system. I am sixty, and my daughter thirty, both of use need the PAIN MEDS.
Recently, the DEA swooped down upon us, both handicapped and sick, and told us to get CLEAN. So we tried, and man it was awful, first the withdrawal, then just CONSTANT PAIN.
TRY TO DRIVE OR DO ANYTHING. YOU CANNOT DO FUNCTION, TAKING OUR LIVES AWAY. LEAVING USE TO OUR BEDROOMS, and not the OPIUM DENS, that they are trying to ALLUDE TO FOR OUR MEDICAL PROLEMS.
NOW, I WOULD NOT HELP THE DEA, and an prior informant for SCEDULE I drugs, since they ROYALLY SCREWED MY FAMILY.
IT IS NOT RIGHT, and it is DESTROYING MY FAMILY.
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???
Chiari
Yes, get another doctor if he is not taking your symptoms seriously...all those symptoms are related to Chiari.
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?
I am from the north suburbs
I am from the north suburbs and have been looking for a good neurosurgeon in this area....Do you still have good feelings toward Dr. Levy and how are your symptoms now..?
Help
Hello my name is Ashley, I also just had this same surgery done about 2 1/2 weeks ago, I am in unbearable pain on the right side of my head, nothing like before, I was wondering if you had problems going to the bathroom I havent gone since the surgery 14 days with no bowel movement, wondering also if you have had any other kinds of relief or whats it like now, im so scared its going to get worse instead of better, please help, if you have any advice, let me know, I live in Michigan so we have differnt docs but it would be great to talk with someone that has a clue about what im feeling! Thank you so much
Ashley
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 the exact same
I have the exact same herniation as you with no syrinx...I saw 2 Drs and one said surgery and the other said no surgery...I am not on meds either but suffer from symptoms like many others too...I have not found anything yet, but I am still looking.
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
Lisa in Boston, I have a 6mm
Lisa in Boston,
I have a 6mm herniation, no syrinx and contemplating surgery...How did your surgery turn out and how are you feeling now?
Julia in Illinois
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.
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