Aa
2 months
Hi. I am 16 years old, and my symptoms started 2 months ago, with a migraine. It went on for a wee or two, and I finally went to the hospital, and they figured it was rebound headaches from naproxen I had been taking for a shoulder injury. They have decided it isn't that since I have been off that for almost 2 months now and nothing has changed. They did ct scan a found nothing worth noting. After a meeting with my gp I had an mri and it found nothing except an "unremarkable 3mm herniation''. Although my headache is not suboccipital and it it is in the top of my head and the front, I get often laughing headaches that are very severe. We seem to have ruled everything out but the chiari, and I am waiting for an appointment with a NS from referral from a headache specialist. I've basically had a headache for two months straight, and medication doesn't seem to help. I'm on 50mg amitriptyline. And Tylenol I get severe headaches, straining/laughing headaches, dizziness from bending over or standing up. It seems to be pretty standard chiari, but my headaches aren't in the back, and my malformation is unremarkable. Don't know what to do and I just want some advice from people who dealt with similar things. Thanks, any help is greatly appreciated.
COMMUNITY LEADER
Hi it is possible to have low lying tonsils and not Chiari....as long as your Dr is looking at the shape and size of your skull and not just the herniation and he has ruled out a CSF obstruction and ALL related conditions.
We are told to avoid certain activities that cause symptoms to flare...since Chiari symptoms cycle and change is it possible to do an activity one time with no ill effects and the next time you're down for the count.
Listen to your body and keep a journal to see what affects you.
Here is a list we created to help -
Activities to avoid with Chiari...
The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:
NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.
NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)
NO contact sports.
NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)
NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
NO moving around in the dark!
NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.
NO twisting your spine – try to keep a good posture with your spine lined up and straight.
NO bending over. lower yourself to the floor by bending your knees – not your back.
NO sudden spinal/neck movements.
NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.
NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.
AVOID sleeping in a head down position.
Avoid cervical traction.
Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.
AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.
AVOID food with too much salt.Especially for woman during their premenstrual period.
DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.
AVOID sleeping in a head down position.
Avoid cervical traction.
Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.
AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.
AVOID food with too much salt.Especially for woman during their premenstrual period.
DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.
So my doctor said a few months ago that my symptoms are not caused by a chiari malformation and that I do not have one. Ok doctor. He did say that since there is some tonsillar descent that if in the future I need surgery he would do it but now it is not a good option. We agreed and got off all meds and flash to now. My symptoms are much better, my all day headaches are much better and I now just get what I describe as chiari headaches with straining, bm, lifting etc. Although I do sometimes get severe headaches and need to lay down. I need some advice on how people deal with this. How do they help their symptoms and get some relief? It's a hard thing. Thanks
COMMUNITY LEADER
Oh I see....well I know it can take time to find the right Dr and rule out all related and non related conditions.....it took a few yrs for me....I started with symptoms while still in high school ( even had some in grade school) and was not DX'd until I was 48 and then did not have surgery until a few months b4 I turned 50.
All in due time.
COMMUNITY LEADER
Unpleasant anniversary?
Gabapentin did not help me at all.....and I did see some relief with the Topamax (topiramate) but it can take a few weeks to adjust to the med....and not everyone can take it....so it is a slow start to see what dosage is right for you.....but again it takes time.
I found changing my activities helped me more then any med could.....and I listen to my body for what I can do that day otherwise I pay.
Also I just wanted to say that in a week or two I will have had headaches for officially one year. It's my unpleasant anniversary!
My pain meds don't seem to be working. Combo of lots of gabapentin and Celexa at night. Already tried propranolol and topiramate anyone have any meds that work well for them?
COMMUNITY LEADER
I may have missed it in a group listing but when I look I look for it yo be listed alone and at the top of the list which indicates they focus on Chiari and it is not just one of the many they do....those that focus on Chiari are the ones doing research and have the experience with ALL related conditions.
Just to play devils advocate...get a few other opinions as well....
With the shaking I could not hold the smallest pot I have to cook with as it shook all over...so cooking was out for a very long time....I am back to cooking and use my large pots....I know to the avg person that may sound ridiculous to be happy about....but I am
Oooo not saying you missed it but I'm very happy to find out that he does. It says "Eastern Ontario, Western Quebec and Iqaluit consist of children with congenital brain and spinal lesions including spina bifida, tethered cord, spasticity, hydrocephalus, Chari malformations, syringomyelia, skull deformities, craniosynostosis, traumatic brain injuries, and brain and spinal cord lesions including tumors, cysts, abscesses and vascular malformations." I'm very happy he has experience. This was on a page about the place he's from. As for the chiari and shaking insights thank you for your help. It's been great to have someone who has been through this
COMMUNITY LEADER
Hi...thanks for the updates on how you are doing....
The headaches with strain or laughing, coughing, and sometimes talking, yelling etc...is Chiari as well as bending over....this is why most Drs will give us instructions for certain activities to avoid to help reduce the symptoms..
Chiari symptoms also cycle and flare so you can think you know your symptoms and then they change and you have a whole new set of them.
As for the shaky hands...I had that as well...and I would say it may be a combo of meds and Chiari....since we all do not experience this symptom.
List the Drs name is not familiar to me and when I googled it no where does it mention Chiari.....he may be familiar with it, but I feel not a true Chiari specialist that will know ALL related conditions....JMHO
Oh I have also been noticing significant symptoms which change how i live my life. I am not very able to bend over to pick something up because I get extreme headaches. I also get horrible headaches in laughing. I hate how this is affecting me.
So things have been progressing, i finally got the support and now i have an appointment to see a ns on the 21st of march. I hope this goes well and he takes this seriously. I have also been referred to a chronic pain clinic. I am now taking 600 mg of gabapentin three times a day as well as celexa seeing as my doctor has had good success using that at low doses for headaches. Recently my hands have been extremely shaky. I am an extremely high level pianist and this is a worry. I have also had difficulty spooning liquid like cereal and working on a computer. Could this be the meds? Or maybe the Chiari? BTW the ns name is dr Vasilyadi idk if anyone knows him.
1 Comments
Sorry thats *Vassilyadi at CHEO
I'm asking all this because my parents believe it's psychological or that it needs to be ruled out. I agree with the ruled out part but idk what to think. I've started gabapentin on top of the propranolol so we will see if that helps, but I might be able to convince them to send the scans to a specialist if specialists did such a thing
1 Comments
Have you had your parents join you in reading this site? It may help you show them you are not alone in how you feel or how your are treated and not believed.....ask them to read posts here and ask questions
So I feel kinda disheartened because I believe my headaches are caused by a physical problem, and my doctor and even my family believe that this could just be psychological. Whether this is actually chiari or something else, I thought that they would be behind what I think, and even more that I now have bilateral numbness. I still havent had a spinal MRI and I want to send my scans to a specialist. Do you know of any specialists who would check my scans through like an email?
1 Comments
You are not alone in this...when I was in high school I was sent to s shrink as they felt the same thing with me....but my Chiari was not found until I was 48....so you are lucky in that....but finding those that not only understand but know how to treat it can be even harder to locate.Most of the True Chiari specialists will accept copies of your MRI and info to help see if they can be of help.
Well I've never had a spinal mri so I guess idk if I have a syrinx. Do you think a spinal mri is the next thing to investigate?
1 Comments
A spinal MRI is going to be needed at some point and getting it now could help shed light on some of your issues.
COMMUNITY LEADER
Hi...it is possible to have some numbness or even hypersensitivity..so it is not uncommon for an issue like this to happen....do you have a syrinx as well....this type of issue is more of a typical issue with a syrinx then just Chiari....BUT we are all different and how it affects you will be different then how it affects others....do let your Dr know.
So as a sort of last resort I have started doing acupuncture. I don't know if this is normal for people but I feel the needles on the left side of my body, you know they kinda hurt once in awhile. But on the left I barely feel them go in? Is this normal or could this be related to the chiari?
COMMUNITY LEADER
Raising your books...computer monitor to eye level can help with the neck pain that can add to the headaches.....some schools have a slanted platform to place on desks to raise up paper work and books to help with these issues....
B4 I found out about Chiari I took my computer monitor at work and placed it up on a box to help with my neck....then once DX'd my Dr told me to do that ...when I already had.....so, I know it is something that can help and will be suggested by a Dr....
Even carrying books that are too heavy....a backpack may be something you want to avoid as well.....some schools will allow the backpack on wheels....anything that will help you lessen your load.
I'm not really able to work that way. Is this helpful for Chiari or for another cause
COMMUNITY LEADER
Were you able to check out any of the Drs on the list?
I am so sorry you are still in pain.....
when at school are you able to do work on a raised platform on your desk to help prevent bending your neck down to look at things on your desk....this may help your headaches.....
I did have a cine mri and they said the flow was normal, although the the Chiari was larger. I get headaches a lot at school now, daily and usually after tests or something. They are pretty bad but I'm handling it even though I have no answers. He is pretty sure that occipital neuralgia is not it now. I take 65 mg of propranolol 3 times a day and I guess I'm just living with pain now.
COMMUNITY LEADER
We do have a list, but as for the one in Canada the same things apply...the list is not a referral nor endorsement....it is meant to be used as a tool to help you with your research of Drs....
And I will admit the list is not as large as the one we have for the States....but with each person that uses it, if they add other names of Drs they find the list can grow
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605
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