I have type 1, 6.8 mm, and my worse symptom is always neck pain. Today, my neck popped in a weird way and it hurts to just hold my head up. What are some at home remedies or exercises I can try to make the pain lessen?
I've been to a neurosurgeon, he said that I don't NEED surgery, yet, and they're slacking on my neurologist referral. They started me on Topamax 25 mg, which I immediately had a reaction to, so I've not been taking it. But the pain has been persistent and sometimes, like today, its so bad I don't want to move.
I went to the Heartland clinic at UW, he was a specialist. I haven't been tested for anything else, I was told I "barely have a Chiari".
The Topamax, over night, affected my vision. I went to the clinic, I was old o have my eyes checked because that kind of decrease COULD NOT happen over night. I proceeded to have my eyes examined, they told me there was no way it wasn't the medicine and to stop taking it.
A CINE MRI is done in 2 parts, the first is similar to a reg MRI the 2nd part is done with a contrast dye added and a clip or leads added to record ur BP during the test and it is recorded in real time...as a video and not still pics as the reg MRI is this is to watch the flow of CSF...Some call it a flow study...but that is what it does watches as the CSF moves to see if the tonsils pulsate with the beat of the heart beat.
What did they mean u barely have Chiari...were they refering to the size of ur herniation? If so, this Dr was not a true chiari specialist bcuz Chiari is not the herniation, but the malformation of the skull....the herniation is a result of the small area.
Unfortunately some NS and NL alike whether specialists or not decide if the herniation is not greater than 10 mm that is is not significant enough to be considered Chiari malformation. I was told this by a NL in my area. He told me I barely made the cut off for most specialists to even consider looking at me as a "true Chiari patient" and not a hypochondriac. Get a second opinion! Selma is right you need a CINE MRI and a second opinion! They do not have any specialists in my area and I have sent my information off to several that I found on the list of Dr."s they have on here. Check it out there may be one on here that is close to you that actually is a true specialist! :) I have the same problem with pain and nothing ever really makes it go away totally, but I made a rice heating bag that I warm up in the microwave for moist heat, it doesn't smell the greatest so I add potpourri to mine (it helps some with the starchy smell) and use that on my back and will alternate it with ice on a rare occasion (ice and I don't get along :) except for my HA's) if the heat alone doesn't seem to be enough. I used fleece like for sweatpants and left the soft side out! sewed the square up except for a hole big enough for the rice and potpourri (turn it inside out the way the seams aren't showing Lol!) put the stuff in sew it up and warm it up! It's awesome! Make it as big or small as you want!! Hope this helps sweetie!!! I will be praying for you!
Chiari is not the herniation, it is the malformation of the skull.....and Drs that say other wise have not been reading up on the most recent research on chiari and will not be of help to u....
Someone with a 2mm herniation can have more issues then someone with a 13 mm herniation....
It is the width of the tonsils and if they r causing an obstruction and if there is overcrowding.....usually referring to a retroflexed odontoid or other anomaly ...like a kinked brain stem....these r more of an issue then how long the tonsils r.
Find a true Chiari specialist and u will see a huge difference.
Size doesn't have anything to do with it. Mine is 9mm and I Selma is correct... Chiari is not the herniation, it is the malformation of the skull..It is the width of the tonsils and if they r causing an obstruction and if there is overcrowding.....
It is also about finding a specialist to do the right tests and to listen to you and your symptoms.
Needless to say he is also the one that said that there was nothing more wrong with me than that my brain was to big for my skull, nothing to worry about, no big deal....Didn't matter that I was having symptoms (severe) even then. He wouldn't tell me the name of the "birth defect" I have cause it isn't anything to worry about. his words. My GP sent me elsewhere! I am still on the "Royal Chiari merry-go-round" but am working on rectifying that issue!
I know that it is not the size of the herniation and because of my GP I now have a name which was why I came here after lots of research and Dr.'s. I also have other health issues that complicate my Chiari. I had one NS say he wouldn't touch my neck compression issues due to the Chiari, You have all the symptoms (of both) but it's not a big deal, you've been able to live with it for this long so it can't be that bad. What treatment plan did you have in mind? if it's the same as what I'm thinking we might be able to do something. I just looked at him like he'd lost his mind! I'm not a NS or a doc! Lol! Some people should not carry a licence to practice medicine! Lol!
That was why I was asking. It sounded like you were having all kinds of issues and I couldn't understand why they were just blowing it all off. I had a doctor tell me that the symptoms meant nothing. Unless, I was burning my limbs on accident, such as sticking them in scolding water and not knowing it, there was nothing anyone could do for me. I just know some doctors, who aren't specialist put a lot of emphasis on the size. I hope you find answers soon!!
You could try one of those bed buddies that you heat in the microwave. I found the weight and the way it forms around gives a kind of soft support to the neck that allows it to relax. Sometimes, I have to wear it a couple of hours, but it always works for me. Also, I recently purchased a water pillow. I use other soft pillows over it for a squishier loft, and it finally seems to be the right combination for me. My head and neck don't feel like I'm sleeping on a steel anvil.
It sounds like ur Dr is not a Chiari specialist and we suggest u get another opinion as to what is going on and get help from a well experienced Dr.
I do hope u find a way to be comfortable in the meantime.....but please research Drs and see a few and compare them....and educate urself on what chiari is, not on how Drs were taught yrs ago...get the newest updated info.
Thanks, like I said some have no clue! :) I am hanging in like hair in a biscuit and will continue to do so! The thing is I get so frustrated with them saying it's not considered Chiari unless it is bigger than...because any size can cause issues if it is blocking the flow of spinal fluid, and there are other health problems that come along with the Chiari for most. I am still trying to convince the doc here to do the testing so when I go to the specialist I already have answers to some of it in hand and hopfully won't have to spend as much time going through more testing! :) Unfortunately the ones that don't know my history very well look at all of the health issues I have and immediately think.. hypochondriac! It's very frustrating! My mom said that when I was little the USMC doc's used to tell her that they had never seen anything like me! Lol! I had three full blown cases of chicken pox! They thought I had Rheumatic fever at one point, was diagnosed with arthritis very young! I was sick every time they turned around, they were dumbfounded! :) Still have problems today and I still keep them confused half the time! I had one ask me for a list of my symptoms, so I went head to toe and listed every symptom I have from every problem I have and he handed it back to me and said "re-do it, this makes you sound like a hypochondriac and I know you aren't one so re-do it" I told him I experience all of those symptoms, maybe not everyday but pretty near everyday! he wanted for my HA's only. Well next time be more specific, I have a lot of symptoms related to my head issues and they are being ignored! Frustrating sometimes! But I hope to find one that listens and knows what they are doing soon! At least the NL I see now knows what Chiari is! Lol!
Hi Tried that but as all else it helps for awhile.....Trust me, I personally feel like a nut job sometimes with all the proven things wrong with me: High Blood Pressure: Auto immune disorder which I receive monthly infusions of Gamma Globulin, Migraines, past stroke with no residual Effects and now Lyme Disease, which is Notarious for causing headaches! I am now on Doxycilline for 30 days and I am not so sure what the Immunologist will say ! If Docs had there way...they would just give us drugs ...Not all og us want that. I do not. I am waiting for a name of a Headache Specialist, I will be glad to pass along IF and When I get it! I live in Ct. But I am willing to travel at this point. Good Luck!
Hi if I'm not mistaken a sx is short for syringomyelia which in turn goes along witha chiari malformation. I have both, the sx is a long tubular cyst on the spine due to the fluid not being able to flow from the brain to the spine properly.
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