One of the uncommon causes of headache is called Chiari malformation. Also referred to as Arnold-Chiari, it’s a condition where brain tissue protrudes into the spinal canal. It happens when part of the skull is extra small or misshapen and presses on the brain, forcing it downward.
As with much of the scary stuff I write about, very few people’s headaches are caused by this malformation. So don’t panic! Chiari is detected by an MRI and headache is only one of the many possible symptoms.
Anna Roberts, a medical student in the UK, was recently diagnosed with and had surgery to correct her Chiari malformation. She describes having brain surgery while a medical student — a situation where she has enough information to be scared, but not enough to know what’s really happening.
Mayo Clinic has an easy-to-read explanation of Chiari, it’s symptoms and treatments. You can also learn more from NIH‘s Chiari fact sheet.
[via Kevin MD]
I had a shunt put in not a shiny
I was diagnosed with chairi 1 malformation at the end of 2013. I had my first surgery in 2014 and 3 more in 2015. I had to have a shiny put in because my spinal fluid started leaking into my head causing severe pain and almost killed me from clotting. I still suffer from really bad headaches from time to time. Does anyone know what I can do to help ease them. My doctor said there isn’t much more he can do, he’s an amazing doctor and I trust him fully. Please help me, I’m so tired of dealing with this pain
Chiari is a comorbidity of Ehlers Danlos Syndrome, and from what I’m reading, it would seem a lot of you have symptoms of EDS. The most common type of EDS is the Hypermobility type (HEDS). Symptoms of HEDS are hypermobility, joint pain and weakness, Headaches (typically from TMJ but also from Chiari and craniocervical instability), TMJ, IBS, GERD, Reynauds, numbness and nerve pain in arms and legs, and the big humdinger…Dysautonomia (adrenaline surges, insomnia, fatigue, dizziness, sensitivity to light, sounds and crowds, POTS, fainting, and being misdiagnosed as having anxiety, depression, bipolar, etc. as they look like Dysautonomia). If you have EDS, consider surgery carefully as you have genetically defective collagen, which is the glue that holds us together. If you remove skull, you could be just creating a wider hole for all your already weakened tissue to sink through. I’m having an upright MRI in Seattle in a few weeks to determine if I have Chiari (I was diagnosed with HEDS at Mayo in 2007 at the age of 37. Upright MRI being a necessity to rule out Chiari in most HEDS patients. EDS is hugely under-recognized. I went to the national EDS conference this last summer in Baltimore, and best estimates by the leading doctors and scientists in the field agree that between 1% and 5% of the population have HEDS in varying degrees. It is imperative to know if you have EDS before any type of surgery.
my name is julie 47 years old diagnosed very recently with platybasia and chiari malformation the headaches are god aweful (maxalt) somewhat helps going to pain clinic 13th disk in my back and having surgery on my vertebrae will be in neck brace for 2-3 months chronic pain needs to dealt with seriously ask your doctor about a pain clinic run by specalists who look at your mri and ct and know through a plan how to treat you. that is what i am doing in ca. i have a great team and if i have to do the platybasia surgery fine. i have no support from family except dad and robyn, doctors, surgeons the more you ask questions about your condition the success rates, recovery period the better you will be. having a counselor to help me deal with things is a god send. medi-cal. no else found it i thank god they did and now treatment can begin and i can heal. i am finally believed that chronic pain is real and i am not crazy.
Michelle, Thank you for your response. I will look into getting those pillows. I can’t wait to get the stitches out tomorrow morning…I understand it will take time to recover and will give it time as doctors tell me to do. I am usually a little more active although being in a wheelchair due to Spina Bifida not as much as a few others on here.
I just had chiari malformation decompression surgery 6 days ago…I am relieved that I did the surgery and the doctors so far seem to think it was a success….that being said I know it is also just a few days after surgery and this recovery process can’t be any slower….I hate the constant pain stiff neck…what has anyone else found to help relieve the pain to sleep a bit better? Any sleeping position better than another or certain pillows I should look into getting? Is it normal to feel a bit off balance? I’m not sure what “normal” is anymore….
Mila, my mom got me a contoured, memory foam pillow. It has great support for your neck. I got it at walmart and the two edges have different size contours so you can turn it either way for the best support. She also got me a wedge shaped pillow for when I needed to be elevated to eat or read or have a conversation. I stack my contour pillow on top and it is pretty comfortable. Almost a year later, I use both still. On my blog (i hope they showed the website) i talk a lot about what has helped me during recovery and I have pictures of most things I use to gain confort. Also, multiple clay icepacks as they help numb the pain and with multiples, they can be switched out easily. Recovery will take time and I encourage you to give your body all the time it needs. I was so off balance, I had to use a walker for a month and I had 24 hr care for 8 weeks. I didn’t have any setbacks, it just takes a lot of rest which will be difficult if you are used to being busy. I pray your recovery gets more comfortable, I totally understand how difficult it can be.
When you have Chiari do you have a bump at the back of your head protruding from underneath the skull ? been suffering from severe headaches at the back of my head which trigger with coughing. I get hissing in my ears daily and the hiss varies in loudness. Did CT scan but came normal and last week an MRI but still waiting for results. My other conditions are hypertension, sleep apnoea, ibs, diverticulitis.
In 2004 I was 2 and had a seizure I was rushed to the hospital and got an MRI and I was diagnosed with chairi. Over the years since then I have started to get headaches and very bad back pain. This year My mom took me to a hospital to get another MRI when I got the MRI I was found with spinal fluid in my spine I believe, which was causing me to have scoliosis. Until now I have had even worse back pain,headaches, and now I have had moments when I get dizzy or lightheaded. I still haven’t had the surgery yet, because my parents and I have had bad experiences with surgeries because of the loss of my sister Alexis. After my sister passed away I began to play tball and currently play softball. Softball makes me forget about everything and I just feel happier. Will I be able to keep playing?
Hi! The first thing you need to do is to be seen by a neurologist, have some tests done, and find out the extent of your Chiari Malformation (CM) and if you also have any of the related disorders that go along with CM. Find a dr that is familiar with CM, and ask him/her to run any/all tests that your insurance (if you have it) will cover. You need to know the extent of your CM before you can make the decision (with your doctors guidance!) on whether or not you can/cannot continue to play softball.
I myself was a very active, athletic, and unfortunately, accident prone child. My symptoms began very early in my life, however, due to “the times” (DR’s didn’t run CT’s or MRI’s for “headaches” like they do now) and other circumstances, I wasn’t diagnosed until I was 27, which was 10 years ago. I played several “contact” sports, ice hockey and rugby, as well as softball and cheer leading for many years. Now that I’m VERY familiar with CM and all of the things it comes with, I often wonder if my athletic activities may have contributed to things “progressing” to the extent they are. But, I’ll never know.
No two people with CM have the same “diagnosis”. Meaning, your symptoms may be similar to another person’s, but the causes and effects, as well as treatments, may be totally different. Not everyone with CM needs surgery. Others have had several surgeries for it.
The point I’m trying to make is, don’t give up your dreams of playing softball just yet. Speak with a qualified doctor, ask questions, get testing, and discuss it all with the dr. From there, you’ll be able to make the decision as to what’s best for YOUR situation. Again, even though we may all have the same disease, our bodies are all different, as are our symptoms, so our needs and treatments will be different as well. But, the great thing is that you’re NOT alone!
There are several resources to help you find doctors in your area (or semi-nearby) to help you. Do your research. Look online at reputable CM web pages, where you can find more info.
Gentle hugs and lots of positive thoughts being sent your way! If I can help further, please let me know!
No,no don’t jump into surgery. I don’t know what state you are from. But there’s very few surgeons who specialize in this. There are other factors as well. Have you been diagnosed with eds, or cranial cervical instability. Have you had any sleep studies done, or any mri’so to check for a tethered cord. Start reading an learn as much as possible. Some doctors will write it off like it’s nothing, especially if it’s not in there realm. I’ve been going thru this for 4 years an for the majority of people I read who have had it after some time alot of there symptoms recur. I am having 3-4 discs replaced in hope that will give some wiggle room for the brain. There is the chiari institute.in NY , an they will operate on anyone pretty much. They also have a class action suit of over 50 people they screwed up or did unnecessary surgeries, you really need more than one opnion. Some doctors will let you mail in your discs an give you there option (of course there’s a fee for some). I personally am refusing decompression as they open you once chancesaid are you’ll be opened sgsin. Right of the bat there’s about a 50% chance there will be a dura leak an they go back in the next day. On Facebook there’s a group chiari malformation of Rhode Island, on it the girl posted doctors by state who specialize. Check it out. My mri’s change each time on length also it all depends on the angle they film at. Good luck . But read as you have to be your own advocate. An try not to get disheartened, if your told it’s all in your head, as that’s there way of covering for there ignorance. Feel free to email if you have any questions. bleau@cox.net.
My headaches haven’t stopped, I had a ct scan and 2 mri’s. First MRI said 5mm, second one 6 or 7mm. I’ve been referred to a neurosurgeon next Wednesday. Should I just outright ask for the surgery?? Looking for suggestions.
Hi. I have Chiari. Had surgery “brainstem decompression” in 2000. It was the best choice I ever made. I had all the symptoms I’ve read on this blog page. I called them head rushes, dizzy, blurred vision, faint, horrible neck pain…had it all. Took over a year to diagnose once I was serious about getting answers, I was 34. In 2004 I had a spinal fluid leak from the area where the patch was put in, developed meningitis…now that was worse than anything I’ve ever experienced. From then on I had migraines. Found out yesterday I have a cyst at C1, fluid sack extending from C3-C7 and C5-C6 there is a bone spur. Waiting to get into the surgeon that performed the surgery in 2000. It’s always scary the unknown, and to think about surgery and remembering what all that entailed. But we have great doctors in Birmingham! I pray for success stories. I would recommend surgery over the alternative.
now i have high neck pain what shal i do?
Hello. I am 20 years old and was recently diagnosed with Arnold-Chiari. I have had a severe headache/migraine for 10 months now, (Yes, it is the same one) and absolutely nothing helps. I have tried EVERYTHING. I was just wondering if trying for disability after the surgery is absolutely necessary? I have an appointment with a neurologist in March but, I would like to know if I have to start preparing for disability if it is necessary. Thanks!
Well its been almost a year since you have posted. I hope things have gotten better for you an you didn’t do anything foolish . This disease or misplacement of our brain is a life long battle unfortunately. You are lucky ( in a sense) to have other family members who also have it. So be glad there is at least someone who believes you an understands. If you still would like someone to talk to fell free to email me. My name is Amy an I’m 40 an had a great life until this happened 4 years ago. Now I’m pretty much house bound as I refuse surgery an have 4 rupturned discs to top it off with 2 blocks in the spinal fluid. I understand your hopeless feeling. .bleau@cox.net
I have just been told that mine has dropped 5mm… I have consistent headaches for over 2 months now. I see dots of light from time to time.. a couple of times it was like I couldn’t see. I have the tingling in my neck and shoulders.. head feels heavy like i can lift it. I still continue to work, a few times a day when I get up I get dizzy like i am going to fall backwards. I have had 2 MRI’s now, I go see the Dr next Monday for the results. I am being referred to a neurologist. I’m just worried, all I want is the headaches to stop. Any suggestions to what I should ask my Doctor? about the next steps? I see a lot had surgery but most were over 5mm.. you can email me at: xoxosillymexoxo@yahoo.com
July 2014 I was in a minor car accident that cause 3 bulging cervical discs. After 6 or 7 months of getting better, I began getting numb in my left hand, weakness and locking of my left leg and eventually the headaches came. I saw doctors all of the time and they thought I was just crazy. Eventually, the headache stopped going away with pain meds, sleep, hot or cold therapy, and when I almost injured myself at work, I went to the doctor and demanded another MRI to compare from the one against the accident. On the cervical MRI they saw my cerebellar tonsils and recommended a brain image to confirm Chiari Malformation I. Luckily, I have excellent insurance and it took about a month and a half from diagnosis to surgery. I am 18 days into my recovery and I have been headache free. HOWEVER, I am still at risk of complications and there is pain because they cut through your neck muscles. If you do this surgery, please have someone who is prepared to do EVERYTHING for you for at least 6 weeks. I writ a recovery blog trying to detail the day to day of recovery, and it isn’t all pretty, but I hope it helps people understand what the process is like after the surgery.
I was more scared of the headaches than the surgery, and while it it hard right now, I look forward to being able to lead a fulfilling life again. I hope the same to everyone dealing with this.
Hello I’m 22 years old and found out just over a year ago that I had a Chiari malformation and is 20mm.up until now my symptoms never overly bothered me. The odd intense headache whilst straining and that was it. I think I was lucky for a few years. Although I am now 30 weeks pregnant and have started too get loss of vision. I’m petrified not for me but for my little boy in my tummy and my partner with a mortgage and things like these on your mind we can’t afford for me to stop working full time. I have been offered decompression surgery but am worried now more than ever about the risks due to becoming a mummy very soon. If anyone has any information on decompression good or bad please reply. I’m in such limbo as what to do.
Thanking you all
I had surgery in November 2008 afterwhich had therapy during recuperation and today it is 2015 and I’m still suffering from complications whereas I have extreme pain in my neck, feet, legs, back not to mention the terrible headaches. Nothing I have taken for pain helps. Have gotten to the point where I have numbness in hands & arms to the point where I’ve gotten burn and didn’t realize I was burn as bad as was due to not feeling anything. I have tingling & burning sensation in my fingers & toes. I constantly off balance and dizzy which if you didn’t know me you would think I was drunk, honestly this has caused me so much UNHAPPINESS, but I pray daily hoping for things to get better taking it one day at a time.
Deborah, I’m so sorry. Thanks for sharing your story with us. I’m sending you best wishes that you find some relief.
Take care,
Kerrie
Hi I’m 12 and I have chiari. My mom, my aunt and 3 of my cousins have it too. Everyday I experience severe headaches and I have digestive tract issues because of it.I miss a lot of school and I’ve been threatened that I might fail the 7 th grade. My mom has also been threatened to be taken to family court. My mom has had 3 brain surgeries and my aunt has had 1 brain surgery. Can someone tell me how to cope with chiari. Sometimes I think about committing suicide. As a matter of fact I’m home from school right now because im sick.
PJ, I’m so sorry you’re having so much trouble right now. Please hang in there–there are treatments available and ways to learn to cope with chronic illness. Have you ever seen a headache specialist? I’m wondering if surgery might be an option for you. Unfortunately, I don’t know a whole lot about Chiari, but I have found some information that might be helpful to you and your family:
–Some online patient forums (like support groups): http://asap.org/forum/ and http://www.chiarisupport.org/
–Details on types of support groups (online, in person, and telephone): http://asap.org/index.php/resources/find-support/
–A Chiari handbook: http://asap.org/handbook.pdf
I recommend looking into the forums and support groups. That’s where you’ll find the most information from patients who live with Chiari.
I wish you all the best.
Kerrie
Well its been almost a year since you have posted. I hope things have gotten better for you an you didn’t do anything foolish . This disease or misplacement of our brain is a life long battle unfortunately. You are lucky ( in a sense) to have other family members who also have it. So be glad there is at least someone who believes you an understands. If you still would like someone to talk to fell free to email me. My name is Amy an I’m 40 an had a great life until this happened 4 years ago. Now I’m pretty much house bound as I refuse surgery an have 4 rupturned discs to top it off with 2 blocks in the spinal fluid. I understand your hopeless feeling. .bleau@cox.net
Hello, I’ve been suffering from pain and headaches for 4 years now! The pain in my shoulders and tingling in my hand was worse first so I went to the doctor cause I knew something wasn’t right! Turned out I had a fracture in my rotator cuff! Had surgery and when I got out they tell me they were wrong there was just cob webs, went through the therapy to just did not feel better at all still a lot of pain, went back now I had a tore rotator cuff, can you believe they asked if I did what I was spouse to do after the first surgery! Went in again to find out once again he was WRONG! I’m mad now 2 pointless surgeries!
Ok I still had the migraines and they just kept getting worse and worse So I go to eye doctor! Maybe I need glasses well I did and 4 months down the road my vision got worse went back I had obtained a stigmatism…man oh man! Headaches didn’t go away though and my neck started hurting really bad all together I was getting the double vision and blurred, as someone called them above I told my doctor it’s like little white sparked of dust floating around me! The balance problems I’m constantly switching feet when I’m standing still and more All of the symptoms, I’ve got them!
Honestly I would rather have food poisoning then to have to go through all this pain! I don’t know how I’ve done it so long!
at this point everyone thinks I’m faking it and telling me I go to the doctors to much, they’d say if I just didn’t go I wouldn’t know what was wrong! Well I’m sorry only you know your body and when it’s not right YOU KNOW! I’m not crazy, Mri on my brain! They seen all the strain in the blood vessels from the headaches! And mri on my neck confirmed I had chiari! I didn’t even know what this was, and it was hard to fathom at first, I ask myself why me all the time cause I’ve been through a lot in my life too! And this is just one more thing diagnosed! I’ve been crushed and was legally dead 4 times, at 4. Went into a randomn coma at 6 rolled my car, should’ve been dead but that’s when all this started! There’s so much pressure I feel like I’ve got a vice grip on my head and I can’t control the person squeezing it!
I looking around for doctor and I found one that will hopefully be able to help me! im not even scared anymore either I want this to be over I’m annoyed!
Could this all be connected though???
Annapotter25@gmail.com
Anna, what an ordeal! I’m not sure if what you describe could be connected to the headaches. I recommend seeing a headache specialist for an accurate diagnosis and treatment plan. The top of this page has links to specialists: http://www.thedailyheadache.com/resources. I wish you the best of luck in finding relief.
Take care,
Kerrie
I had decompression surgery for Chiari I, 14 & 16 mm herniation (which originally were diagnosed as 4 mm on initial MRI). I’ve suffered from chronic headaches since the age of 12, I’m now 46. The surgery alleviated severe neck pain I had developed for 2 years after a fall but it has not resolved the headaches. Medications generally aren’t very affective – the best result I’ve had is using 20 mg Baclofen (a non addictive muscle relaxer) 4x/day and taking a double dose for headache onset along with 4-6 Tylenol. In the past year I’ve been having Botox injections for “migraine”. Initially I was hopeful but I’m finding the forehead injections affect my vision too much to be considered tolerable for a rather minimal improvement in the number of headache days.
Carol, I’m sorry that the headaches weren’t relieved by the surgery and that the Botox side effects are unbearable. Many of the treatments are similar, no matter what kind of headache you have. It could be that you find success with other migraine preventives. Topamax and amitriptyline are the first that come to mind, but I don’t know what you’ve already tried. Now that you’ve had the surgery, it might be useful to think of the headaches as something separate. Maybe approaching the treatment from a different angle and maybe considering a different diagnosis would be effective for you.
Take care,
Kerrie
I have been diagnosed with a 16mm chiari and have to have surgery the spinal fluid is blocked. I have the worst headaches imagined with extremely bad neck pain. Not gonna lie I’m scared to death. I have blacked out and was unconscious several times when that happened all I remember is a very sharp pain going through the back of my head down to my neck and blurred vision I can’t see when that happens. The dr talked about a pointe drop pump after surgery. Can someone please tell me what that is what it does and what has ur experiance been. How long you were in the hospital afterwords and if u had to be admitted a day or two before surgery. I have done a ton of research but maybe hearing it from someone who has this would help better understand how it all works. I go in on Monday to schedule the surgery.
Hi Ashley, I’m not familiar with the pump, so I can’t help much. Wanted to let you know I’m thinking of you and I hope the surgery goes well. I’ve heard from many people that it has changed their lives for the better.
Take care,
Kerrie
My 17 yr old son just diagnosed with chiara and is a keen sportsman can he till do sports
You’ll need to ask your son’s doctor about whether or not he can play sports. Best of luck in getting good care for your son.
Hi I have had cranial decompression surgery, your stories are so similar to what I have suffered. Going from one doctor to another, it is very frustrating as you feel very let down by the doctors. As some doctors don’t know a lot about ACM1. After the decompression surgery I was in a lot of pain. I was sick a lot, so it was a terrible time. But I thought after the surgery that would be it, no more headaches. But I returned to work after seven mouths of being off recovering. I went back to work far to soon, as a result of that I went off sick months later. The bending forward, coughing, sneezing etc. I just knew there was something wrong, so I went for a second opinion the surgeon has been doing surgery for years, he deals with this condition. So he looked at my old scan which was sent from my other hospital where I had my surgery. The surgeon said, that he could see a crowded area in the back of my head where I had, had my previous surgery. So he sent me for an MRI scan, I went back to see him. He said, the CSF is getting restricted so this would mean more surgery. So I am on a waiting list for more surgery. I have done it once before so I think I can do this again. As the surgeon is experienced and this has gave me hope again as I have no life. As the headaches stop you doing a lot of things. I am positive that this is going to help me. To Teresa and anyone that has got to go through this with a family member or has to have the op. You will find the strength to go on and make sure you get an experienced surgeon I think this is the main thing to do. Talk about the options that you have, do you need surgery? Does the decompression need doing at this moment in time. A good surgeon will tell you what he thinks, also he will listen to you and see what your quality of life is like. I know that I couldn’t cope with the pain any longer and that I am at that stage again where I will do this op again, just so I can have a little bit of life back. I am 47 I have got 4 children that 2 of the eldest have got children. So I am a nanny and I love the 5 of them I am due another grandson in a few weeks. I cant wait. My daughter is 29 she has got ACM1 as well but the tonsils haven’t gone into her spinal canal yet. This may never happen, I hope it doesn’t, all I know is that I would rather have the op than any of my children. So if you are suffering I hope I have helped you as having the surgery you have to look at your life and see every day you are suffering headaches. Its not fun at all. Thank you for reading. from Michelle.
I was diagnosed accidently last summer of having Chiari Malformation due to another situation going on. I am 56. I opted not to do anything about it & just live with it. I researched the diagnosis and have had many of the symptoms for years & never knew what was causing the headaches. I was told my headaches were due to a hormonal imbalance years ago. They gave me a prescription for 5 mg. Zomig. I use my pill cutter & make 4 pills out of it. When I get my headache. I take one of those, put ice on my head & neck and fall asleep for about an hour & it goes completely away. This small pill causes my pain to just relax, I start sneezing after about an hour, and my nose starts running and I am good to go again until the next headache. They come daily every once in awhile. I could go 6 mths with nothing and then I get them daily for a few days. Normally, I wake up to them in the morning. On a scale of 1 to 10…the pain is a 10, until the Zomig kicks in. Sometimes, I have to take 2 pieces. Zomig has been my life saver for me 🙂
Hi, could you give an update? I am in exactly that position, or rather I was, but after that the headaches were every few days, then every day, and now I simply have it all the time. Zomig used to be my lifesaver too but now it only works on occasion as the headache has sort of ‘spread’ so that my entire head feels like it’s in a vice, as opposed to the localised pain behind the eye(s) I used to get. I just wondered if this sounds familiar? Have you got better or worse since 2013? Thanks!
Pat, have you been diagnosed with both Chiari malformation and migraine? I ask because triptans (like Zomig) are typically used to treat migraine. The progression of headache frequency you describe is similar to what happens with medication overuse headache (also called rebound headache). This can happen when a person uses certain types of medications more than 10 to 15 days a month. The headaches were bad to begin with, but they become even more frequent over time. The only way to stop these headaches is to stop the medication. You don’t need to stop cold turkey, though. Your doctor can help you find a treatment that will provide you relief when you detox from the Zomig. After you and your doctor get a full picture of your headache frequency, you can restart a certain amount of Zomig. Best of luck finding relief.
Take care,
Kerrie
My daughter was diagnosed with syrinx excuse spelling syromalegia she is 20 and now after the mri find the cause is chiara they need to opp but as yet we not on medical aid so this will only be done in a few months as a mother i need all the advise and understanding you that has been through this can give me pictures ect.I would so much appreciate your support thank you.
Hello. I was Diagnosed in 2008 and had surgery in 2009. First year was great but ever since i have really bad headaches and have to take alot of time off work. It is very hard to deal with while trying to keep my job. I have been to and from doctors because of it but they cannot understand why i still have the headaches and there is no reason i should be having them. I dont know what to do as at the moment i have had 2 headaches this week and still can shake the one i have now. I have had it for about 10 hors and no pain killers are working. I so dont know where to go from here as when i go to the doc i feel as thogh i making it u.
Does anyone else have simular problems
thanks stephanie
I feel for everyone that is living with Chiari. I was diagnosed in 2009 with a 20mm herniation, but I have chosen not to have the surgery until I have a syrinx. I have been to a local neurosurgeon who was ready and willing to throw me on the operating table right then and there! I chose to go to a neurosurgeon at the Cleveland Clinic and get an expert opinion and proper tests. Because Chiari comes with so many symptoms, it’s difficult to make the decision to have surgery until it’s absolutely necessary. For pain relief, I take Vicodin, Celexa, Diazapam, Topamax and Sumatriptan. Flexeril also works great for the muscle tightness and pain a lot of us get in our shoulders and neck. Good luck and best wishes to all of you!
Hi Everybody,
Man oh man, have I been looking for a community!
I could have commented on so many of these but chose to reply to this one as it more specifically referenced symptoms and the Syrinx. I pray everybody can glean something from this.
My name is Mike. I’m 37 years old. When I was 28, I was preparing to start cage fighting. I was fresh out of the military and feeling pretty good. No major symptoms (I thought). Went in to get checked for some general back pain between the shoulder blades. Turns out I had Chiari 1 Malformation with a Syrinx. I had no real symptoms but of course I’ve always just had a very high tolerance for pain so I didn’t really give into it often. I was so lucky to have a fantastic surgeon (Kevin Kelley) with SSO (Surgical Specialists of Oklahoma.) He’s currently working in Illinois. He’s was an absolute God-send from start to finish.
Office Information
Neurosurgery Aurora
2040 Ogden Ave., Ste. 300
Aurora, Illinois 60504
Main: 630-978-6770
Office: 630-978-6770
Fax: 630-978-6773
He was very specific in his questioning. We couldn’t come up with any general symptoms of the condition warranting surgery until he asked me about neurological symptons. To my absolute fear, he explained that my choking and frequent hiccups were the result of nerve damage caused by the Syrinx building up, as a result of the Chiari Nalformation and that surgery was absolutely necessary. We did the posterior fossa decompression surgery 9/2008. 5 days later I was home, resting. The nerve damage is permanent with no possible treatment. I still choke on food to this day.
I was home for a month when the stitches holding the dura mater tissue together popped loose after a violent nausea episode. I felt like my head was going to explode. We went to the ER and a few days later I was back in for surgery to close the stitches. At the last minute I had to have kidney stone surgery and was sent home for about a week, during which time the back of my head started to resemble a flat Basketball from the built up of (CSF) cerebral spinal fluid.
We went back in for surgery to fix it. Everything was suppose to be great after. I woke up screaming from pain and found that I had tubes hanging out of my head and couldn’t move. They explained that we needed to do a 72-hour study to see how high my internal cranial pressure would get to more properly deal with it surgically.
After an unbelievably excruciating 3 days of begging for death, they determined that my (ICP) was off the charts, requiring placement of a ventriculoperitoneal (VP) shunt to prevent further hydrocephalus.
We completed the (VP) shunt surgery and I was home 5 days later. They said if I had no blockage or infection associated with my (Strata) VP shunt during the first 9-18 months, that I probably never would. Thanks be to God that I never have. My 3 surgeries, 6 months in the hospital and the subsequent visits to check my valve have saved my life and given me a second chance to be a Dad and husband again.
I am currently the manager of a (WISP) Wireless internet service provider. I climb towers hundreds of feet in the air, get on rooftops, work in extreme heat and labor nearly everyday in my occupation.
My worst days are the occasional “firecrackers on the back of my head.” This is the result of un-healed cut nerves that fire periodically, giving me a spark/itch sensation and some mild headaches. I take no medicine other than Tylenol and pray I will never revisit this problem.
My oldest son, had this surgery as well. He handled it like a champ and went home 5 days later without any relapse. I do ask if anyone knows anyone with experience in dealing with autistic children and sleep apnea. Sleep apnea is almost hand-in-hand with Chiari Malformation.
Sleep and oxygen deprivation can account for a great percentage of your headaches and restlessness. You think you’re sleeping but you’re gasping and completely waking up at night and don’t even know it. I use a CPAP when I’m not fighting with the thing.
Anyway, my son has headaches quite frequently and we’re not sure why. The surgery was a total success and we’re not excited about revisiting surgery again but we hate how he’s in obvious pain and is so lethargic at times, not responding to us or very slowly. I’ve read that adenotonsillectomy surgery is helpful in adolescents who suffer from sleep apnea but haven’t spoken with any specialists about it yet.
Well, I’m pooped. I look forward to speaking with you more about this. Conquer Chiari!! Pleas feel free to engage me in conversation. I’ll be as informative and helpful as possible. In summary, if you have major symptoms don’t wait for surgery out of fear; just get the right Doctor. mikesleik@gmail.com
My 5 yr old daughter and I were diagnosed a few months apart in 2011. We both suffer from agonizing headaches. We are being followed by 2 different neurosurgeons. Mine recently did a cine MRI which showed abscense of the 4th ventricle and marked impedance of CSF flow at the cysterna magna. I am scheduled for surgery next month and am pretty scared. I’ve dealt with the headaches for as long as I can remember but since the birth of my 3rd child 10 months ago my symptoms seem worse. My short term memory is HORRIBLE and I never use to have to even write lan appt down I always remembered. Now when they call to remind me I’ve already forgotten I had an appt! One day I was driving and all of a sudden it was like a switch went off- I was confused didn’t know where I was or where I was supposed to be going. I get aches and pains everywhere, I gag all the time to the point now I can’t eat without gagging or puking. Depression and anxiety with panic attacks plague me daily. It takes me awhile to start to urinate. I getting crushing pain on the top of my foot for no reason and goes away after a several hrs. I feel Luke my body is failing me. Oh and let’s not forget the heart palpitations and crushing chest pain. My herniation is 15mm with the tonsils wrapped around my brainstem and spinal cord. I pray my older daughter doesn’t suffer like I do although her herniation is 16mm no cine MRI yet. She also has cervical instability and something about the cysterna magna I believe being at an abnormal angle? My 13 yr son was spared and I pray my new daughter was as well. I’m glad I found this website, it’s nice to talk to people who understand bc most people think crazy!
I have Chiari and it took 38 years of extreme pain to get the confirmation I was not a Psychiatric case. Needless to say I have had two decompression surgeries which help for a while and then the symptoms are back. It is a crappy life to live and I can’t stand the people who say things like “must be cool to have such a rare disorder” or “I wish I had what you have, it would be nice to have so many days off!” Why can’t people accept this is a true SERIOUS disorder???
Burk—Get a new Dr! Thats insane that your Dr would tell you its unrelated to your ACM! Mine was at 11mm and I had to have a sub-occiptal brain decompression (crainetomy)with removal of
c-1 and duraplasty. Any Dr who says its not related to the ACM is not educated enough about the condition itself, in my opinion. Ive been dealing with it for 10 years so I can relate. I had the surgery in 2010 and it did help quite a bit. Pain returned a little bit but not too bad, and my numbness on the right side didnt return! I was rearended at a complete stop by a girl going 40 mph 2 months ago and my whole side started going numb again and I wanted to cry! Sure enough my malformation had dropped another 4-5 mm…The pain is unbearable. I go to my neuro in a few weeks but until then I decided to go to a chiropractor (even though Ive always been a skeptic) and it has been helping trmendously. I know its just a quick fix, but it helps until I can get in to see my Neuro.
Alicia,
I’m so sorry to hear the pain has returned. I wish you the best of luck treating the malformation once again.
Take care,
Kerrie
Just wondering if any body can suggest a medication that can help with the pain???
I was first diagnosed with a Syrinx which is a fluid (CSF) filled cyst in the spinal column. Mine is small and is located in the Cervical spine. A Syrinx can be caused by a few things and one of them is a Chiari Malformation however; the neurosurgeon I first saw indicated that if I had a Chiari malformation at all, it was negligible. That was nearly 6 years ago. I’ve suffered for years from terrible chronic and debilitating headaches that no one can seem to explain. Different doctors try to tell me it is for different reasons and I do have many injuries and much wear and tear after 20 years in the military so it’s understandable. What I’ve come to believe is that the Syrinxe probably was caused by the Chiari malformation (just saw Nuero again last week) and that the headaches are from the same. I wasn’t sure because I have some degenerative discs in my C-Spine as well (C-3, C-4, and C-5) and I did get some relief from traction. This made me believe that, when applying the traction (lifting the weight of my head off my neck bones) if I received some relief, than it must be the discs after see the doc the other day I’ve formed a new theory.
So, to the point and more specifically, for those looking for some temporary relief (hopefully) from their headaches. I believe that the type of traction I was placing myself in was actually allowing my brain to make space in the cervical canal that becomes blocked or partially blocked by a Chiari malformation. Can’t hurt to try and it’s free. I simply lay on a bed or a bench on my back with my head slightly over the edge, allowing the weight of my skull (average head is about 8 pounds) to provide some traction on the cervical spine. I lay in this position for about 5 minutes. Try not to hang upside down! Too much blood rushes to your head, this is not the intent. Just let your head rest like you are looking upside down at someone and if you feel some relief, take a break (getting up slowly so the blood doesn’t rush out of your head and you get dizzy and fall over) than later in the day, repeat.
This isn’t the end all and I have much sympathy for all those out there suffering. I read all I can, when I can stand to get on the computer for any length of time. Hopefully this could help one person one time. Please don’t risk your health for this technique. If it hurts, don’t do it.
I have been diagnosed with chiari malformation l! I have had the surgery an then started leaking spinal cord fluid an had to have a lumbar drain an that still didn’t work so I had to have a shunt put in an I still have migraineheadaches! I know that I still have some healing to do but never thought I would be in so much pain! I have 2boys an I can’t even do thing with them that I want to do bc of this! I am considering applying for disability! But I know that is a long process to! Do any one have any suggestions on what I can do for pain an disability! :(:(:(:(:(
I was diagnosed with a chiari I malformation in 2001. I have had headaches since I could remember age 12. I had a severe car accident at age 10, so I am unsure whether or not I was born with this or it was caused by that accident. ADVIL is the only thing that helps the headaches, and sometimes it just isn’t enough but headaches were my only symptom until 2004 when I woke up with the left side of my face paralyzed. It was bells palsy. Hospital gave me meds and told me to wait it out. They had no answers for me beyond that. Of course heavy narcotics do help headaches, but I can’t live on those. In 2008 my head was injured and everything went hay-wire after that. Chronic neck, back, left hip, left leg, left buttock pain persisted for 3 solid years. Numbness in the left leg, arm, and hand also. Eye twitching alternating from one side to the other. With each episode I get sent to a Dr. for that and make no progress b/c they’re are ignoring the obvious. I have told my Dr. about the Chiari and he sent me to a neurologist who hardly spoke English and mumbled something about a brain surgeon referral. I have yet to see that referral and that was 5 months ago. He’s convinced my headaches are migraines and gave me maxalt. I tried one, as he begged me to, and it seemed like it got worse at first, so I took advil and it lightened up. He was so interested in knowing if my headaches had any part of migraine in them. Why is this???? Does he want to prove or dodge the chiari I MRI findings? He seems like he’s in disbelief about the chiari. In fact when I first told him I had one, he asked if that was something I just guessed or how would I know that. I told him I had an MRI in 2001 and it revealed it. Still in disbelief he asked me for the proof of that, to bring the report in and so I did. This all happened before I knew this Dr. No PT did not help except for my neck a little. Been passed around to over 20 Dr’s through HMO, told that the pain must be in my head from the injury. :/ Dead EVIL & DEAD Wrong. I’ve explained that the Dr’s are making me upset and depressed, otherwise I am very happy and try to remain positive no matter what we are going through in life. There’s no way I’d be able to hold a job more than 3 days a week. I tried a full day once as a groomer and I was in pain for two weeks following that long, arduous day of hell. I’ve tried everything from Eastern medicine to Western medicine approaches. I know that I need this surgery but my HMO is running me around from Dr. to Dr. and nothing gets done. It wasn’t until last year that I decided to research what “chiari I malformation” meant on one of my old brain MRI’s. Learning about this serious condition was like winning the lottery. It explains all of my symptoms. In 2008 insult was added to the chiari and that’s what set it off. I do have to say that after rehabilitating myself from the injury, my headaches have decreased but they are far from gone. They are also debilitating at times.
I don’t have a measurement for my chiari but I am begging my HMO primary care to get me a brain MRI. I suppose if he keeps passing me around, I may go to the ER some day with one of these insane headaches that I get, and have them do it? My co pay is 100.00 so that’s not a problem. I have vomited from the headaches as well. I’m sure I have more symptoms but I currently have a headache and can’t think straight enough to type them all out. I just hope this info. helps someone else out there. And yes the newest virus of Dr’s telling patients that their PAIN is “all in your head” is sickening to say the least. It’s how your primary care Dr. gets out of paying for you to see the specialists. I don’t know if I’d rather have the surgery and risk being worse than this, but then again, I can’t imagine being worse. Everything that can go wrong has. Even frequent urination at night, pelvic pain, constipation, memory loss, dizziness, I’ve literally walked to the left at times, and into the walls. How much worse can it get?
I’ve heard the the chiari inst. in NY and Wis. are good. Anyone else heard about them? Who has had great success with surgeries, can you tell us how you chose your Dr. and what to look out for?
Thank you and I wish everyone the best of luck in dealing with this horrible condition.
Did you have surgery done? If so where an how are you doing now
My name is Melissa.. i am 17 years old & i was diagnosed with chiari malformation type 1 in Dec. 2009. I recently had surgery in Dec 2010. the dr said it was caused from the pushing of giving birth to my son.(it is very rare and i didnt know this was possible) I had migranes before the surgery they have gotten worse since ive had the surgery to the point that they come everyday!! i have been taken out of school because of them every year since the 7th grade. I have no clue what to do for my migraines because i have been onn every medicine you can think of and nothing has helped. My doctors dont even know what they can do for me either. i dont want migraines to take over my life!!! any suggestions?? you can also contact me @ mad_14@sbcglobal.net if there is any suggestions i would love them!! thank you
I was diagnosed with type 1 chiari malformation with a 16mm herniation that wraps around my brain stem. I am 13 weeks pregnant and the headaches are getting worse- almost daily I have excruciating pain that leaves me unable to function. My neurologist will only give me lortabs for pain but that doesn’t even touch it. I have also been getting dizzy more and my arms go numb at times. I cant take this anymore!!!
chiari 1 malformation. You posted your upcoming surgery. Where r u having it done?, and keep us posted. We r praying for you.
has anyone had their surgery at UCLA ?
Hi my name is Aleshia. Im 32 and live in New Mexico(yes its in the US).I had surgery for Malformation I in May of 2010. Its now June 2011 and was told that within a year my symptoms should have deceased. But that is not the story. They have only gotten worse and now I do not have insurance and i applied for disablility in Oct 2010. I was denied and now denied again after an appeal. What are my chances of getting Disablilty and where can I possibly get insurance to help me to get the surgery again? Is there a certain Chiari surgeon you recommend? Because I have seen a few online. The pain is really unbearable now. I need help asap. It really sucks trying to get help when you cant even stand to be on the phone or to look at a computer screen. Please help?!?
**********
Aleshia,
I don’t know much about Chiari, but I think the Migrainepage forum would be very useful for you. When you go to the site, search for Chiari and you’ll find some helpful posts. I also suggest contacting the user named Anna’s Mom — she is very knowledgeable on the subject. http://migrainepage.forumotion.net/
I wish you all the best.
Kerrie
Wow! I just came across this site and feel so bad for all who have suffered. I too have Chiari Malformation Type 1. There is help available. Please refer to WACMA.com. My symptoms hit in 2005 and I was misdiagnosed for 18 months which is typical. Bitabutol works wonders for my headaches which are now few and far between. Hugs to all.
Wow, these stories are enough to scare anyone out of surgery, which I am scheduled for in one week. My headaches are not that frequent and I have no complications beyond Chiari 1 Malformation. My main symptoms are lightheadedness, excesssive saliva, bilateral numbness and tingling, etc..
How did your surgery turn out its been a few years would you mind giving an update? Thank you
I had decompression surgery in 2014 at Emory University in Atlanta,Ga. Here are the problems I deal with daily: Constant head pressure, severe neck pain, ear problems, balance problems while walking short distances, tooth pain, sore throat, lower back pain,loss of fine motor skills. I live in a personal care home. I require assistance with bathing, dressing and some grooming. My surgery based on my MRI was considered a positive decompression. My herniation was 13 mm. The sad thing is there is no support after the surgery from neurology. Pain management does not know what medication to give you. I’ve tried just about all the muscle relaxers, Percocet, tramadol, and morphine.
I was hospitalized on Feb 06, 2011 Like at 1 a.m this huge headache woke me up, the pain started from the back of my head and radiated to the front, all my left side was paralyzed also blurry vision with my left eye. My MRI showed I have Chiari 1. I have more than 35 diff symptoms. I am currently going to therapy at The Balance Center here in Nevada. I am also going to Accelerated Rehab & Pain Center. I get shots for the pain & vitamins. It helps for about 2 days and my pain eases a little, then all the pain return. I am also going to see a Neurosurgeon, but quite frankly I am very scared. I pray for all of us walking on this journey, and for our families.
Thank you for all the information and may GOD bless you all for helping others.
June 13 2007 I had my surgery. Having the surgery made a great difference in my headaches. WHich I am so very thankful for, However I can still have some terrible headaches. They are not everyday like before but I can get them and they can last for a few days. Then I have a day to recoupe from the headaches. I have yet to find any meds that will help with these headaches. If anyone has had anything that works for them please send me the name so I can shcek it out.
Hi I was diagnosed with Chiari 1 about 3 years ago but I didn’t have any symptoms. I now have these horrible headaches, but in the back of my head and neck. The only medicine that works, makes me fall asleep. Does anyone else have these kids of pains? And what kinds of things helped you with the pain.
My MRI shows 5mm for cerebellum tonsils, syringomyelia, and also basilar invagination. Does anyone else have basilar invagination or know how to help the headhaches?
I have suffered with chronic headaches and migraines for as long as I can remember (I’m now 42). Also the spinal pain started in my early teens..parents even took me to a chiropractor to see if that would help. In my mid 20s I started complaining of right side extremities numbness and tingling also and was basically sent to physical therapy which ended up causing me to hurt more and in places I hadn’t hurt before. I have had 6 kids and gained a lot of weight with each so of course the prejudice doctors just look at you and say ‘if you lost weight you will feel better’. Ugh! In my early 30s I went to a new PCP and explaines my life long romance with headaches and migraines and also the pain and numbness and inability to even get out of bed sometimes without rolling out and crawling…he just wanted to throw more meds at me and as for the pain and numbness, without even examing me or running tests suggested I probably had an impengement and handed me a sheet with exercises to do and of course, suggested I lose weight…I’ve been 240lbs at my worst. I did lose 60lbs and tried to exercise but I was in tears constantly from the pain. Early 2009 I saw a new doc…same story..hears migraines and just throws meds at me..Earlier 2010..she did listen a bit more and also diagnosed my depression and fibromyalgia and started me on meds for that..still wasn’t helping with the pain…migraines, neck and back and shoulder burning pain, muscle weakness and coldness in my right extremities, numbness and tingling..inability to walk or sit or stand for any length of time…all this progressively got worse…I switched to a new doctor…this time I insisted she listen..she started running tests to eliminate or confirm diagnosis and worked with trying to find the meds that would help give me some relief. Had an xray, CT scand then MRI of my cervical spine, and xray of my T-spine (showed paraspinal spasms and a loss of lordadic curvature) but nothing to really explain the excruciating pain. Scheduled me for the Pain clinic but appts are months out, referred me to a Rheumatologist, then after a head MRI indicated possible demyelinating disease (MS) I was referred to a Neurologist. He reviewed the MRI and couldn’t confirm MS but said I had lesions but they may also be from my migraines…then he saw something the Radiologist did not report…Chiari malformation…didn’t explain to me what it was or meant, just said he was referring me to a neuro-surgeon…had to wait a week to see the surgeon…imagine all the things running thru your mind when you are told to see a BRAIN SURGEON! Anyway, I go in, he confirms the diagnosis but says I have to come back for another MRI (flow study) to see if surgery is an option…they schedule it another 4 weeks out…I go Oct 8th…so now I’m reading everything I can about Chiari and trying to decide if I try to live with this pain for the rest of my life or take the chance on the surgery if they give it as an option. I am a single parent with my 3 youngest (8,10 and 17) still at home. I haven’t worked in 5 mos cause the symptoms have been getting worse and the meds I take really knock me out so now I’m on the verge of losing my home and having my utilities shut off (my ex hasn’t paid any support in 4 years)…I’ve filed for disability but that’s a long process…what’s a person supposed to do? At least reading everyone elses posts I know I’m not crazy and others have the same issues…I’m not alone 🙂 …can email me: tina.wsb@gmail.com…thanks and God Bless
I had the decompression surgery on June 21. I had a 20mm herniation. When the surgeon got into surgery he found that part of my brain had been so compressed it had died and needed to be removed. I am glad for that reason I had the surgery! However since that time, I got spinal meningitis and had to have a blood patch from the spinal tap. My cerebellum is dropping some again and they think it might have been from the leak. I am experiencing lots of spinal pain and still lots of headaches. Has anyone else had the same kind of pain in your spine?
If anyone can help me, I need answers. I had Chiari Decompression & arachnoid microsurgery in L.A. March 2010 and am starting to fall again and have head pressure and headaches again. Neck muscles haven’t really recovered yet. Do these things get better over time, or is this the best I can expect?? I also heard that roller coasters are out now, that I shouldn’t dive more than 9 feet down, and that flying, skydiving, etc… are all on the “out” list also. True? What else do I need to know? Where is there a concise resource for planning the rest of life? Should I be wearing a helmet?
I have many of the same symptoms your daughter has and in reading the numerous stories above I was original diagnosed with many of the other problems as well, fibromyalsia, polymyalgia rheumatica, tension headaches, migraines, etc. – even a “nutcase” until an MRI showed a 21 mm Chiari. I am still trying to be a single mom with 2 kids and work a full time job. Daily headaches and very little sleep is making my daily routine very difficult. I am seeking the advise of a second neurosurgeon and appreicate all the comments – good and bad in helping me make my decision.
I would like to know if anyone has had any difficulty walking? My legs stiffen up to the point that I have trouble getting them to move and have severe pain in my hips/buttocks. They tested for multiple sclerosis but they said that the MRI came back as negative.
It has left me unable to walk any distances or use stairs and now have a disabled permit for my car. I am wondering if this is an unusual symptom of the Chiari that anyone has heard of?
Thank You!
Yes, me too. Was diagnosed with Chiari 1 with 11mm dissention 2012. The Neuro-surgeon would like me to proceed with Posterior Decompression Surgery unfortunately, he also told me there is no cure for this problem and, surgery is to relieve symptoms and, at great risk. I have looked at many sights and read many blogs from patients that have undergone this surgery to learn bhat only a very small number of success stories exist. I suffer with ful lbody pain, worse in lower back and hips. The pain seems to radiate around my middle completely and, makes it difficult to walk, bend and, even sit at times.I also suffer with painful wrists and ankles, left shoulder and neck issues. I am 58 years young and a retired General Nurse, so taking lots of pharmaceutical products would not be my election either. I tend to grin and bare it as much as is possible and, only take anti-inflammatory meds. when the need is dire, otherwise work with my limitations.
Carol, I hope you are doing better and are seeing a good neurologist. I had my decompression surgery five years ago. The surgeon I had was truly blessed by God with his skill. When I was first diagnosed my original neurologist wouldn’t do the surgery because the doctors in my area were very tentative and very stringent on regarding how many cm of cm tonsil encroachment into the foraman magnum constituted a need for surgery. I was blessed when two years later I was led to a new neurologist who immediately knew I needed the decompression surgery via a physical exam. He is one of the leading doctors in the field and began working with Chiari sufferers, relieving their pain and associated symptoms. Yes, the surgery can be dangerous, but in the hands of a skilled surgeon you can have confidence and relief. I waited an additional two years from diagnosis to surgery. During that two year time my symptoms worsened significantly. I was essentially losing all muscle mass in my arms and legs, falling frequently, constant issues with my gastrointestinal system resulting in severe weight loss, vision problems, heart and blood pressure issues, body temperature control problems, the headaches of corse and a host of other issues. Don’t let fear cause you to stop considering the surgery. With the help of a skilled surgeon your life can dramatically improve. Will all your symptoms resolve? Probably not; however, can you regain a good quality of life and enjoyment ? Yes. Find a good neurosurgeon and move forward.
Hi – what was the name of your surgeon and what state?
Thanks in advance.
jess, my friend just had surgery on may 12th, a week later she needed another surgery to correct a leak, it has been 4 days and she is a mess,suffering with really bad headaches, did this happen to you?
I had Chiari decompression surgery when I was 46 years old after suffering severe headaches for over a year. The malformation was between 9-11mm and the surgery was “normal”. Within a week of the surgery, I had a spinal tube placed for in for 8 days due to spinal fluid buildup. From that time, the headaches have gotten progressively worse, I’m often extremely tired, and the doctor has wanted a second surgery to “see what might be wrong”. I have refused, yet going to Cleveland Clinic and UK has not yielded new information. I’m very frustrated and tired of the on-going pain and fatigue. I can sympathize with Scarlet and her daughter, but hope she finds someone who can help her soon.
My 14 year old daughter was experiencing episodes of severe headaches, back pain and neck pain as well as neurological problems like gait ataxia and near-fainting spells. The episodes happened every 3-6 mo and lasted 1-2 weeks at a time. She finally had an MRI of her brain done after being referred to an amazing neurosurgeon at a Children’s Hospital in California. The MRI showed a Chiari Malformation (16mm herniation I believe) & surgery was recommended. I really thought the surgery was a blessing that would help return her to normal. Boy was I wrong!!!
She had the Chiari Decompression w dural graft in 2/09. She recovered ok and was doing well for about 7 months then she developed symptoms of acquired hydrocephalus (apparently a result of her Chiari Malformation and/or the surgery done to correct it). She required a L/P Shunt in 9/09 which healed poorly and required a blood patch (lumbar puncture is done then your own blood is injected into the site) to repair the CSF leakage coming from the lumbar spine surgical site. It was excruciatingly painful. She has had 4 subsequent shunt valve revisions, with the last being in 1/10. She will need another surgery in the next month or so and will be having a shunt tap as well (think amnio for those of you who have been pregnant). She now has severe chronic daily headaches (8/10 pain level) that can’t be relieved by OTC pain meds, migraine meds or even large doses of Narcotics (we’ve tried Oxycodone, Fentynal, Morphine, Vicodin, Demerol). Maybe she is just a very rare case of things gone very wrong, but I would gladly trade what she is like now for the was she was before surgery. Please do the research before deciding to have the decompression surgery and prepare yourself for the possibility of a less than wonderful outcome. The surgical correction of 1 problem can leave you with all sorts of other, unexpected issues. From one parent to another…
Hi. I know this post is 7 years old. I am wondering how your daughter is today?? My 14 yo son has had 2 Chiari decompression surgeries & is not doing well. His symptoms are very similar to your daughters. He is unable to attend school due to this debilitating condition. I am looking for some type of hope or guidance.
I was diagnosed with Chiari in 2005 and in 2006 I had surgery. For the first yr things were great I was able to be with my husband and kids. In 2008 I started having alot of fluid build up, spinal taps became my friend again. Now I am suffering from the dizziness and migraine daily. I dont know what to do. I am looking for a neurologist but I am not sure where to look who is good. I live in Arlington Tx please help if you know of any. I really cant take living like this again, no medication is working.
I have a 17 year old daughter that was a varsity cheerleader and was kicked in the head while performing a cheer stunt and her flyer kicked her in the side of the head. Since that time she has had instances of passing out, severed daily headache, neck pain, and pain going down her arm. I’ve taken her to neurologists, ear nose & throat, optometrist, pain doctor, and neurosurgeon. She’s tried approximately 25 different medications and nothing helps with her daily pain. She has also undergone temporal nerve injections, cervical injections, and stellate ganglion injections that also didn’t help. Because of the level of daily pain she is in and because of the ongoing doctors appointments we have had to home school her the last year. She recently had a MRI of her brain and they found she has a Chiari I Malformation with stenosis as the foramen magnum. She is in the process of being scheduled for a brain decompression and we are praying that this is the answer that will solve her pain issue.
I am so frustrated. My regular GP will write my script for diamox, but refuses to write for anything else. She’s insisting that I see a Neaurologist, which I can’ affort since I have no insureance and haubby and I only work part time. Does anyone have any suggestions about pain frelife thats either natural or orver the counter? I”ve tried exedrine, tylenol, and advil.
btw. I was 16 when i had my surgery and it went PERFECTLY. they told me it would be 5 months to recover and i had to do physical therapy to learn to walk again. However 2.5 months after the surgery i was playing softball. 2 days after the surgery i could stand up again. My neurosurgeon was Dr. Lechner. she WAS a Metro Health in Cleveland. However my mom (yeah she had the surgery too, its completely genetic) said she’s moved hospitals. But if you need a good one, i suggest finding her. She told me i was the “poster child” for the decompression surgery. And for anyone afraid of the surgery…it was described as “more painful than childbirth”. And yes, you’re going to be in a lot of pain for a few weeks, they cut through all your neck muscles. But they sent me home with percocet and flexeril for the pains and muscle aches. For women, you will probably start your period when you are in the hospital or shortly after. Your hips will hurt from laying face down on the table for so long. DO NOT FOR ANY REASON let them rip the bandages off the back of your head. FORCE THEM to use the anti adheasive pads that they have. if they rip it off (like some stupid assistant did to me) you will be in the hospital for a few more hours because of the INTENSE muscle spasms it will give you. If the internal stitches start popping out of your scar do not panic. its really ok. they just pull them out with tweezers and it feels funny. OOOHHH if you get a HUGE lump on the back of your head that looks like its half the size of a baseball its spinal fluid pulling. dont worry unless it starts leaking…thats an issue. Yes, they do use a bovine patch to increase surface area, so you will now and forever be “bull headed”. OOHHH and regular Drs. and ER drs are full of crap. NO, you have never heard of chiari before, stop lying. I KNOW you just went out there and looked it up online so that you could recite everything back to me that i already knew. So be prepared with some knowledge that they might not know if you want them to shut it and help you. if your migraines are absolutly horribly my family dr used to have me into the office and give me a darvacet and a shot of demerol at the same time (couldnt make it to the car afterwards cuz i was so tired). For all you chiari patients who are expecting, this is genetic as i said before. we didnt know when i was a baby but horrible collic is a symptom of chiari. i busted blood vessels in my face and my ear when i was an infant from screaming so hard. I’ve read a bunch of posts here from mothers who have daughters with this condition and wonder if they should have the surgery done. I say YES. like i said i was 16 when i had it done. The schools will dismiss you, they have to send them a tutor, and they will be more than happy to work with you and your child when it comes time to go back into school. I missed 3 months of school by the time it was all over and still graduated with a 3.8. and try to get them into the pediatric ICU when they come out of surgery, they are wonderful with kids there and parents can stay with the kids 24/7, not to mention they usually have a parent room with bunk beds.
Im so sorry this was so long but a lot of people on here seemed scared and not sure what to do. I figured i would tell you what to expect if you decide to go through with it. if you have any other questions i am on AIM. my name is JMillX45. thanks for listenin
I am a chiari patient. I had my surgery in Dec. 2003. I lived with the migraine for almost a year and it took over my life. The surgery cured all the major symptoms i had (complete lack of balance, slurring my speach, ringing in the ears, “white-outs” when i stood up) but i still get the migraines. My Dr. has me on Propanolol for a daily medication and it worked great for a while to keep them at bay. Anymore though, I’m getting migraines llike 4 times a month and i dont know what to do. He wont give me any regular pain killers (I would like percocet just to not care about the pain) but he insists on neuro pills to stop it from happening. any suggestions??
Last year I had an accute loss of vision/double vision with severe pain at the base of my skull. I felt alot of pressure in my ears. I went to an eye dr who sent me to an retina dr who sent me to an neuro optomolygist. None had any answers .I had 2 mri’s.Eventually I found myself at a neurologist who saw on my Mri a Chiari malformation he wasn’t that concerned.He ordered a sleep study.only found that I snore alot. I constantly have a stiff neck and have had neck and shoulder pain since I was a small child.The double vision has subsided.Is this condition something that comes and goes? I am convinced that Chiari is the root of all my symptoms.I also have spinal stenosis and my spine curves in an opposite direction then normal.I have burning in my hands and arms,shins also tend to have very cold hands and feet.Any suggestions? I know I am not crazy !
My fiance was diagnosed with chiari malformation 5mm.She’s been having headaches or should i say headache.she say it never stops.Just non-stop pain & pressure.I feel so helpless when we’re in bed and she’s crying from the pain.And i know it must really hurt.cause she’s good with pain.She has been through so much.At 15 she was diagnosed with thyroid cancer,had surgery on her neck to remove it.In 2003 her car was hit by a drunk driver,she broke her back in that accident.In 2007 the cancer came back.And now this,and she’s only 26.We have a 6yr old son who is autistic and was diagnosed with adhd & pdd-nos.So you know he’s very energetic and full of life.I’ve been looking online to see if there was something that would ease the pain and pressure a little.Does anyone know of anything that might help.If so can you e-mail it to me at. murdoc_515@hotmail.com
I was diagnosed with migraines that worsened dramatically. I had an MRI and was diagnosed with a Chiari I, but that was it. The dr never said or did anything about it. Now I take daily anti-seizure drugs that help with the day to day migraines, stopped eating wheat (which helped a lot), and gave up any sports involving running (which caused migraines that were unresponsive to any medicine). Maybe I should get a second opinion about this Chiari diagnosis….
in the beggining light and sound were very aggrevating to me as well i was also forgetful ,i have had both the Chiari malformation an the syrix surgery in 2001,there is still days that the headachs will burn more than just hurt. alot of this pain comes from not staying hydrated. the long term effects that im exsperiancing is the lost of muscle and strenght in both arms. the only medicine that seems to work is advil.
this was the worst pain i have ever exsperianced in my life. but it is still better than being paralized which can also happen if your not careful.i hope i can help some one , i know my comments sound scary but im just being truthful, good luck God Bless you all
My husband of 26 yrs was diagnosed with chiari 1 about 1 month ago. He has always been faithful to our marriage and up out of the blues, started having spells of intense anger towards me , 3-4 months ago and actually told me he was seeing someone. Told me all the details like it was nothing and acts as if it should be acceptable. He has distorted views on our marital expectations and at times almost seems like he is a completely different person. He has memory loss most definitely , i found a map on his phone showing how to get bk home. He has numbness , in whole left side, vision hearing loss on left side, and severe excessive thirst , also has bowel issues, constipation. Sometimes he seems as though he has lost part of his memory or dreamed up part of it. He is scheduled for decompression on 15th , i dont ? The other woman right now because he seems very confused, evn using words , and statemnts hes never used before. (Almost seems at times like stroke symptoms) very defensive when i question his thinking clarity. It seems at times he completely transforms into another person being very cruel and vindictive towards me , trying to make me look bad . This has almost drove me nuts, does anyone have any input into this hellish mess.?
Is your husband on headache or migraine medications? Specifically topimax or topiramate? They can cause these issues with brain as well. I’ve seen it happen. As well as certain medications mixing and causing serotonin syndrome which can cause mental changes.
I’m 27 years old and just got my MRI results back to confirm Chiari Malformation. They didn’t tell me what the mm herniation was, and I forgot to ask. Because of the Chiari, I have double vision (only when playing sports), Downbeat nystagmus (eyes jerk downward, but not noticeable unless under magnification), sever headaches (but only last about 10 seconds) and happen once or twice per day, sometimes less and sometimes more. Usually caused by strain due to sneezing/coughing, etc. I also have a slight balance problem, but very acute. I also think I have sleep apnea, but not sure if it’s caused by the Chiari, or my deviated septum (both are common causes of SAS) I’m scheduled to see a neurologist in a couple days, and am trying to avoid the decompression surgery. I’ve read some blogs about people who have had this surgery, and it’s made things worse. If anyone has any information about this, please email me at sundevil211@hotmail.com I greatly appreciate it!
Ryan
I was just diagnosed with Chiari type I of 7mm. I’ve been miserable for as long as I can remember and am just glad that there is actually an answer. I think if I heard the word, “idiopathic” one more time I would’ve blown up on the spot! I’m not scared but very much annoyed. I’ve had to be stern with my neuro. to not prescribe more meds that do not work but to get the ball rolling and get me in for a neurosurgeon consult. I want my life back! I’m 25y.o. & cant enjoy anything! Wish me luck!
I just read your comment and have been in the same boat with everything being “idiopathic! Gee, all of these symptoms couldn’t be from my chiari malformation could they??? Luckily after 7 years and two neurologists, I have finally talked with a knowledgeable neurosurgeon. How has everything worked out with you?
I have just been diagnosed with Chiari I Malformation 11mm. I was referred to a Neurologist but she stated “none of this has to do with the disease in her opinion”. So she had me try all these different types of meds to prevent migraines and stop me from being nausea but nothing has helped as of yet. I have a headache almost everyday with ear pain and my right hand goes numb. I find it really hard to function and just do simple daily activities.
I’m with you, I’ve had horrible migraines and all these other symptoms for 4 years now and it’s just getting worse and worse! I’m a little scared but I’m more annoyed then anything cause im sick and tired of feeling like I do! I told myself today I’m ready for the surgery!
I was diagnosed with a Chiari malformation just over 2 years ago. It explained a lot. I had been having dizziness and fainting spells for over 10 years (starting at 12) and numbness for 3-4 years. I am starting to have headaches with increasing frequency, but I am not scared. It is not that I do not understand what this might mean (there are 4 Drs. in my family); I am just not scared. I am really more annoyed. Perhaps the fear will set in later, and perhaps this is my way of not falling apart. Right now, I am refusing to let this take my power and my ability to be happy. If I have to have the surgery it will be ok, or it won’t be. Worrying and being afraid will not change the outcome.
All of what she is going through is everything I’m going through, I’ve actually described the vision problems I’m having as sparkles of light I told him it’s like dust particles that shimmer passing and circling all over! It’s a very scary feeling all of it whether youve been diagnosed with it or not!
I thought it was all in my head, but I knew I wasn’t crazy and I felt like everyone around thought I was faking cause I mean who gets migraines everyday all day and one that don’t go away! Well me… I was just diagnosed with chairi and now I feel so much better as far as I know I’m not crazy! It’s still awful though the pain is truly intolerable! Nothing ever helps me and the pressure I have in my head does feel like I’ve got vice grips squishing it internally! Hope you all can get or got it figured out!
My 14 year old daughter has been having headaches, stiff neck shoulder pain, back pain and recently cold feet and hands, numbness in fingers, dizziness and/or vertigo, sensitive to light and sound. No pain meds for maigrains help. She passed out last summer and feel and hit a tree (whiplash) and is a cheerleader and tumbles. For the past month the headache is continual (like a vice on her head) She has vision spots (she calls them sparkles of light).
Unable to go to school can’t concentrate on homework. I just happed to come across Chiara and am wondering if anyone out there has had some of these symptoms. We have been to family doctor, ER visits, eye doctor, allergist, sports therapy, chiroprators, neurologist (peadiatric). What does any one thing? Please respond. I just want my happy, fun and virant daughter back.
All of what she is going through is everything I’m going through, I’ve actually described the vision problems I’m having as sparkles of light I told him it’s like dust particles that shimmer passing and circling all over! It’s a very scary feeling all of it whether youve been diagnosed with it or not!
I thought it was all in my head, but I knew I wasn’t crazy and I felt like everyone around thought I was faking cause I mean who gets migraines everyday all day and one that don’t go away! Well me… I was just diagnosed with chairi and now I feel so much better as far as I know I’m not crazy! It’s still awful though the pain is truly intolerable! Nothing ever helps me and the pressure I have in my head does feel like I’ve got vice grips squishing it internally! Hope you all can get or got it figured out!
I have just found out today that I have a Chiari 1 Malformation 15mm. I have suffered with chronic migraines since the age of 12 years (now 46) and after an injury 16 years ago I am now displaying most of CM1 symptoms – too many to mention. I have just read the messages above and to those of you who are looking for something to help relieve the headache symptoms: in January 2000 my husband read a report stating that MAGNESIUM supplements 300mg RDA can help. They certainly helped me. I still get the odd one but they are less intense and less frequent. Please try them and let me know how you get on! GOOD LUCK TO YOU ALL X
I was diagnosed with Chiari 1 in 1993. I had the decompression surgry in 1999. I still suffer with headaches, neck & shoulder pain. I’m 50 yrs old. I take meds for the headaches at night & just lay down when I feel real bad. I don’t have any health insurance. I just trust God day by day. You can get on disability for this disorder. ASAP can help you w/information concerning chiari at:903-236-7079 or info@ASAP.org
I have a chiari malformation where my brain stem terminates 11 mm below where it should (My cerebrellar tonsils are longer than they should) my neuro said that I shouldn’t worry too much until I start getting light headed and dizzy. This was about 4 years ago.
Guess what’s started happening EVERY day now? I’m getting lighteaded and dizzy.
I’m so scared, and I get migraines EVERY day. Thankfully I’ll be getting insurance in 90 days, so hopefully I can have something done!
Hope you are doing better
My daughter had Chiari decompression surgery in December 2007 and has now developed daily headaches of excruiating pain. She is also severly sensitive to lights. This developed after surgery. Any suggestions for relief. Pain meds are not helping.
I suffer with headaches, migraines and the rest of the fun fun fun … and until I was diagnosed with Chiari Malformation 1, I was scared. What was causing them? What was wrong with me? I understand how scary this disorder sounds but, honestly, I am so glad that I now know why my headaches come so frequently. At least now when a doctor tells me its all in my head I can laugh and say, “well yes Dr.Smartypants, it is all in my head!” What is most distressing to me is the stigma and dismissal that many of us get from the medical community. It happens more and more often that as we complain of pain, headaches or whatever, we are held up for intense scrutiny. The medical community , moreover society as a whole is so focused on addiction and routing those people searching for narcotics fraudulently that those of us with viable chronic pain conditions (diagnosed and undiagnosed) are lost in the shuffle… at least that has been my experience.
For the record I was diagnosed with Fibromyalgia, Chiari’s (15mm herniation), migraines and BPD … lucky me!!! Weeeeeeeeeeeeeeeeeeeeeeeeeeee…. LOL!
all my best,
Tharilyn
My 17 year old daughter was diagnosed with chiari a few years ago, when her headaches get real bad she just goes to bed. No pain meds seem to help, neurotin, topimax, otc’s.
AT WHAT POINT DO DOCTORS THINK SURGERY SHOULD BE DONE? She has mri’s to see if there has been any change’s. Something about cerebral tonsils i think. Thanks.
My doctor said if you don’t think the symptoms are interfering with normal day to day life and can be just take medicine for the pain then do that but if it is that bad it is time for surgery. I had surgery Oct 5 2016 still slowly getting better.
Mila-
How do you feel since your surgery? Do you feel the surgery has helped? I have had a headache from my Chiari for over two years straight and recently the pain has increased.
Beth,
I’ve responded to your questions in an e-mail. I think I’ll be able to give you some good suggestions for coping with your headaches.
It may ease your mind to know that more than 95% of headaches aren’t caused by a life-threatening or dramatic problem — like an aneurysm, brain tumor or even Chiari. I know that it is still scary, but hope you can take some comfort in this statistic.
Hang in there. We’ll be able to figure something out.
Kerrie
(To everyone else who is reading this, I will post the resources that I find so you may benefit from them, too.)
If anyone knows how I can get some relief from the headacges please email me at ConcreteAngel959@sbcglobal.net. I have taken every kind of over the counter pain reliever and use ice packs on my head, neck,temple.eye socket, etc… and nothing really helps. Any advice or suggestions will be deeply appreciated. I’ve been doing alot of reading on Chiari and to be honest, I’m scared to death. Please, somebody help me. I dont have insurance of any kind. Also, I’m wondering if this Chiari qualifies me for disability? I live in Michigan, does anyone know where I can go for medical help? It hurts so bad now that I’d like to die just so the pain will stop.
Please help! I am suffering with the god-awful headaches, other then blowing my head off, what can I do to get some relief? I don’t have any insurance and the dr wants cash up front for office visits which are 350.00. Any advice that will give me any help will be appreciated.
While I’m still fighting for diagnosis, chiari seems the only answer to my many inconsistent randomly debilitating and unexplained symptoms. I have been seeing a specific very knowledgeable/highly trained massage therapist for years who has turned the frequent severe migraines (intense enough to seriously consider suicide an option and medication has no effect) into a dull barely noticeable pain (and gone completely for over a year) as well as many other symptoms kept in check or eliminated. I’m in edmonton Alberta and I highly recommend RMT Scott kellsey for treatment of chronic pain caused by or is terrifyingly similar to Chiari malformation
I had the surgeory in October 2002. It was one of the best things I could have done. I was so sick with headaches that it took over my life, now I am alot better.
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That’s terrific news! Thanks for sharing your great story.
Kerrie
An online friend and I developed our headaches about the same time. Her daughter had surgery for Chiari, and bingo–that’s what she had as well.
But yeah, our headaches were totally different, and I took a peek at my MRI and it didn’t look anything like a Chiari patient.
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Did the surgery help her?
Kerrie