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chiari 1
Hi.
I have recently been diagnosed with mild chiari malformation 1 and its at 9mm.
this was found during an mri for severe neck pain.
i have also been getting dizzy everytime i stand up or sit down or lie down, and often when i turn my head. I have also been suffering severe headaches becoming more frequent everyday.
I have been waiting to see a neurologist for over a month now, and have to wait another week. My dizziness and headaches are driving me crazy and i am unable to do my job properly. (im an outdoor recreation facilitator). nothing i take seems to cure the headaches (ibuprofen, paracetamol, acetametophin, nothing.
any suggestions on what i can do to relieve these symptoms and also what questions i need to ask the neurologist next week?
thanks,
I have recently been diagnosed with mild chiari malformation 1 and its at 9mm.
this was found during an mri for severe neck pain.
i have also been getting dizzy everytime i stand up or sit down or lie down, and often when i turn my head. I have also been suffering severe headaches becoming more frequent everyday.
I have been waiting to see a neurologist for over a month now, and have to wait another week. My dizziness and headaches are driving me crazy and i am unable to do my job properly. (im an outdoor recreation facilitator). nothing i take seems to cure the headaches (ibuprofen, paracetamol, acetametophin, nothing.
any suggestions on what i can do to relieve these symptoms and also what questions i need to ask the neurologist next week?
thanks,
COMMUNITY LEADER
...yes, some people can be born with a syrinx...but like Carolyn said can develop as a result of CSF pressure and flow....and it can be acquired from a trauma in a accident or fall.
From most of what I have read and learned from other chiarians and my drs.....once u have these issues, if u even cough too hard u can cause an issue.....not that everyone will have that problem but it is possible.
U have to find a way to listen to ur body as to what u can and can not do nemore.....we all have to become willows.....and go with the flow.....if u r an oak, u may break in the wind.
From most of what I have read and learned from other chiarians and my drs.....once u have these issues, if u even cough too hard u can cause an issue.....not that everyone will have that problem but it is possible.
U have to find a way to listen to ur body as to what u can and can not do nemore.....we all have to become willows.....and go with the flow.....if u r an oak, u may break in the wind.
I don't have a syrinx either but I think that they can be formed from the pressure of the CSF flow...or some people get it without Chiari from an injury. With Chiari...you definitely want to avoid any activities that will make it worse..I used to waterskii and run and for the most part I have accepted those days are over. To me, it's just not worth it to take the chance to trigger things again.
You don't have to have one to experience all the symptoms you are having. I had a large number of symptoms (40+) including some very debilitating ones that affected my ability to walk. They did look for a syrinx in my cervical and thoracic spine but didn't see any. The conclusion then was that it was being caused by the intense pressure from the CSF blockage. After the surgery, when the pressure was relieved, I saw an immediate change in my legs. I would say they are 80% better, I still have a limp and an unstable gait at times but sooo much better than before.
Carolyn
You don't have to have one to experience all the symptoms you are having. I had a large number of symptoms (40+) including some very debilitating ones that affected my ability to walk. They did look for a syrinx in my cervical and thoracic spine but didn't see any. The conclusion then was that it was being caused by the intense pressure from the CSF blockage. After the surgery, when the pressure was relieved, I saw an immediate change in my legs. I would say they are 80% better, I still have a limp and an unstable gait at times but sooo much better than before.
Carolyn
interesting!
this could be the reasoning as to why i have some degenerative something in my C7 i think. and im only 20! i thought that was odd. as degenerative generally applies to over time....
anyway, i guess now i just have to keep waiting and see what the neurologist says. after waiting over a month, hopefully he knows something about chiari.
do you know how a syrinx comes about? are you born with that also? or can it appear somehow? like from waterskiing? and activities like that which probably arent good for your head?
this could be the reasoning as to why i have some degenerative something in my C7 i think. and im only 20! i thought that was odd. as degenerative generally applies to over time....
anyway, i guess now i just have to keep waiting and see what the neurologist says. after waiting over a month, hopefully he knows something about chiari.
do you know how a syrinx comes about? are you born with that also? or can it appear somehow? like from waterskiing? and activities like that which probably arent good for your head?
COMMUNITY LEADER
Hi...I know this is confusing and frustrating...a syrinx is commonly found in the cervical spine...some drs only look there, but they can also be found in the thoracic and lumbar spine.There r several things that could be going on at once and it is best to check it all up front, so u and the dr know what is going on and what needs the attention first.
Many chiarians will have several things happening...we tend to get DDD sooner than most, stinosis, and our disks tend to bulge and disturb our spinal cord....
So even if u have the chiari surgery, u may need another one to address issues like a disk impinging ur cord....if u were to have that...and yes those issues can give u some of the same symptoms.
"selma"
Many chiarians will have several things happening...we tend to get DDD sooner than most, stinosis, and our disks tend to bulge and disturb our spinal cord....
So even if u have the chiari surgery, u may need another one to address issues like a disk impinging ur cord....if u were to have that...and yes those issues can give u some of the same symptoms.
"selma"
ok, so i had a cervical MRI looking for what was causing my neck pain, and all they really found was this chiari. but they said i had no syrinx, but can one of these be found lower than my neck? like further down your back or anything? because if i dont have one of these, does that mean my headaches and dizziness and other symptoms are being caused my something else?
its all so confusing and frustrating
its all so confusing and frustrating
I totally understand that you want to continue with the activities you enjoy...I felt the same way. Unfortunately for me, I didn't know that Chiari was causing my symptoms and I was stubborn and decided to continue running and lifting weights even though my body was telling me differently. This caused my symptoms to dramatically snowball and affected my legs leaving me eventually with a very stiff, painful gait which made it difficult to walk. Not trying to scare you...just wanted to let you know to watch for progression when doing those activities...and if you notice any..stop! I noticed things for about 3 months that were warnings (ankle would got stiff and immobile, legs would feel like jelly and knees would feel like they were giving out, feet ached constantly and felt weak) but as I said...I was stubborn and was told by drs that it was anxiety so I ignored it.
The only ones that I really feel understand are the people here...so when you are sick and tired of people not getting it...just come on here :)
Take care and I really hope that things work out for you!
Carolyn
The only ones that I really feel understand are the people here...so when you are sick and tired of people not getting it...just come on here :)
Take care and I really hope that things work out for you!
Carolyn
COMMUNITY LEADER
Hi...the term borderline really depends on the person using it...some here in the states use it to mean the herniation is less than 5 mm..... some may use it to mean that the herniation is not causing a blockage......Size is not the determining factor so unless ur drs did a CINE MRI to look for a CSF blockage and also for overcrowding, then they must look at ur symptoms....if ur symptoms reported were very minimal, then they may also use that term.
AS to the list of drs, when Hursty48 gets in touch with u she can tell u a bit more as she had the surgery.....u may need to travel to get to a dr, we do here too!.
And for the things u do, the activities r up to u, yes u will pay for it for a few days later....and that may increase....to really hurting during the activity and u could fall and cause ur chiari to increase it's size rather quickly, I am not saying this will happen only that it can, so it is more of a risk for u to do these things.....I understand as I love going on roller coasters, they may not be a sport like what u do, but I so enjoyed them and I remember getting these weird HA's after and thought it was normal for the type ride I was on...as they increased, I went on them less and less.....
Listen to ur body , and once u see a NS that does specialize with chiari u will have a better idea as to where u r as to monitoring it or surgery.
Even after surgery I am having issues with sleep....right after my surgery I was sleeping great.....but the further out I get from it , it is returning.....my problem is I lie there for 2 or more hours , can't get comfortable and can't fall asleep no matter how tired I was crawling into bed.....but in the AM, I could sleep all day......I don't want to get up and can fall asleep easy.
It is hard to get family , friends and co-workers to understand, and that is not surprising when there r many drs that don't either.....
But u have all of us : )
"selma"
AS to the list of drs, when Hursty48 gets in touch with u she can tell u a bit more as she had the surgery.....u may need to travel to get to a dr, we do here too!.
And for the things u do, the activities r up to u, yes u will pay for it for a few days later....and that may increase....to really hurting during the activity and u could fall and cause ur chiari to increase it's size rather quickly, I am not saying this will happen only that it can, so it is more of a risk for u to do these things.....I understand as I love going on roller coasters, they may not be a sport like what u do, but I so enjoyed them and I remember getting these weird HA's after and thought it was normal for the type ride I was on...as they increased, I went on them less and less.....
Listen to ur body , and once u see a NS that does specialize with chiari u will have a better idea as to where u r as to monitoring it or surgery.
Even after surgery I am having issues with sleep....right after my surgery I was sleeping great.....but the further out I get from it , it is returning.....my problem is I lie there for 2 or more hours , can't get comfortable and can't fall asleep no matter how tired I was crawling into bed.....but in the AM, I could sleep all day......I don't want to get up and can fall asleep easy.
It is hard to get family , friends and co-workers to understand, and that is not surprising when there r many drs that don't either.....
But u have all of us : )
"selma"
SLEEP!! this is a major issue for me at the moment. im so exhausted but i just cant to go sleep and i wake up with crazy headaches. it just seems so unfair to wake up in the morning feeling just as terrible as i did the night before.
Ive checked out the list of activities to avoid, but im just wondering the consequences i i continue? i really like my activities. i water ski, go tubing, snow ski, work on high ropes courses, surf, all those kinds of activities. I know the next few days after are horrible, but it is nearly worth it. is it just the aftermath that i have to compete with or is there more damage that could be done?
also, my MRI report says mild borderline chiari malformation 1 of 9mm. from what i have been reading, 9mm is fairly signifigant and not really borderline? is this correct?
Its so nice to know that im not the only one feeling like im going crazy. my colleagues think im just tired and lazy and dont get enough sleep but there really isnt anything i can do about it.
The list of Dr's in australia you gave me were all in perth and sydney. is this because thats where they are based and no where else? im from country victoria, kind of near melbourne and its quite hard to get to sydney or perth..
thanks for all your help!
Ive checked out the list of activities to avoid, but im just wondering the consequences i i continue? i really like my activities. i water ski, go tubing, snow ski, work on high ropes courses, surf, all those kinds of activities. I know the next few days after are horrible, but it is nearly worth it. is it just the aftermath that i have to compete with or is there more damage that could be done?
also, my MRI report says mild borderline chiari malformation 1 of 9mm. from what i have been reading, 9mm is fairly signifigant and not really borderline? is this correct?
Its so nice to know that im not the only one feeling like im going crazy. my colleagues think im just tired and lazy and dont get enough sleep but there really isnt anything i can do about it.
The list of Dr's in australia you gave me were all in perth and sydney. is this because thats where they are based and no where else? im from country victoria, kind of near melbourne and its quite hard to get to sydney or perth..
thanks for all your help!
COMMUNITY LEADER
Hi, I do understand this is ur job,but have no other ideas but to step back.....by stepping back I mean cut back, not avoid all together, u have to work, but u may need to change what u do, I know it is not an easy thing to think about ... and this is one way to see what is a trigger for u...below is a link to a list of activities to avoid....but u may find things not on the list affect u and things on the list u can do without a problem.Heat can be an issue for many chiarians as well as the cold....bright sunlight gets to me ,...we r all diff as to what affects us......sleep is one major issue as if we rn't cloudy in the brain enuff with this but to add insufficient sleep makes it all worse.
There is another member in Australia, I will have her contact u with drs names for u to look into.
http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
There is another member in Australia, I will have her contact u with drs names for u to look into.
http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
Thanks for all the advice guys.
Does anyone know of anyone in the Melbourne, Australia area where i can find a good chiari specialist?
I too have different types of headaches. sometimes that last for days, some short sharp ones and the in between.
Is there any types of activities that i should avoid doing?
and selma, as for stepping back the activeness... its kind of my job. its summer here in Oz, and its hot and im in the heat pretty much all day long. maybe this is why its getting worse?? Im losing it. im just over feeling horrible each day, and every morning, and not being able to sleep.
Does anyone know of anyone in the Melbourne, Australia area where i can find a good chiari specialist?
I too have different types of headaches. sometimes that last for days, some short sharp ones and the in between.
Is there any types of activities that i should avoid doing?
and selma, as for stepping back the activeness... its kind of my job. its summer here in Oz, and its hot and im in the heat pretty much all day long. maybe this is why its getting worse?? Im losing it. im just over feeling horrible each day, and every morning, and not being able to sleep.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is true once u have a dx of chiari the best next step is to locate a NS....going to a NL is fine since they dx and u do want to be checked for other chiari related conditions, but if ur NL is not up on chiari they may not see the need, so a NS that is a true chiari specialist will have a NL working with them that can eval ur condition.
U will want to be checked for a CSF blockage and overcrowding, and then the drs will look at ur symptoms....
In the meantime, wear a brimmed hat and good sunglasses while out side....most of us the sun can be a trigger for the HA's and sounds like ur job is out doors....also, avoid carrying too much step back how active u r to find what ur body can tolerate to help keep those bad HA's at bay.
"selma"
It is true once u have a dx of chiari the best next step is to locate a NS....going to a NL is fine since they dx and u do want to be checked for other chiari related conditions, but if ur NL is not up on chiari they may not see the need, so a NS that is a true chiari specialist will have a NL working with them that can eval ur condition.
U will want to be checked for a CSF blockage and overcrowding, and then the drs will look at ur symptoms....
In the meantime, wear a brimmed hat and good sunglasses while out side....most of us the sun can be a trigger for the HA's and sounds like ur job is out doors....also, avoid carrying too much step back how active u r to find what ur body can tolerate to help keep those bad HA's at bay.
"selma"
I think the only treatment for symptomatic CM is Surgery however this is not a cure but dose help with most of the issues involved.
You need to be under the care of a NS, one with good CM experience.
It would be wise to have a full MRI along with a CINI MRI to rule out other CM related issues and a CSF obstruction.
Ray
You need to be under the care of a NS, one with good CM experience.
It would be wise to have a full MRI along with a CINI MRI to rule out other CM related issues and a CSF obstruction.
Ray
Welcome to the Chiari Club! For starters listen to what everyone here says about needing to get to a neurosurgeon not a neurologist!!! I just went to a Neurosurgeon two days ago and she said "the reason the neurologist could not help you is that they do not and can not treat Chiari and therefor don't know enough about it" The people on this board have been through it and know how frustrating and long this process can be to find someone that can really help!!! The faster you find someone that knows something about Chiari the faster you can get help.
The next great advice is that YES, you will now need to do the spine MRI and the CINE MRI. That is what you want to be trying to accomplish. My neurosurgeon explained that it gives them more information and they need to rule out tethered cord before they do surgery so that they do not make things worse.
As for the headaches.... I swear that as these head pains increased they came in all shapes and sizes!! I seem to have MANY different types of headaches and I try to treat them by what they feel like. Chiari head pains.. the ten second gripping ones I just stop whatever I am doing that is making my head angry. The Migraines I try to figure out... sometimes migraine meds help and sometimes they don't, time is making it easier for me to tell the difference, they are similar but not exactly the same. I agree with the caffine advice, I take excederine and wash it down with tea or mountain dew and that seems to help for some reason. Not great when it is evening or the middle of the night but when the pain is bad enough, a couple of excederine in the middle of the night don't sound so bad! I am very frustrated with all the head pain and sometimes just stare at the bottles trying to guess what might help... thanks to the time with the neurologist (which got me nowhere!!!) I have a wide variety of choices. The percocet that I use for my jaw and neck will help for about two hours and then it is usually worse than before but at least it can buy me some time if I need it!!
Best of luck with this process!! There is a great deal of wonderful information to be found here and I hope you get all the answers you are looking for. Sometimes it is just nice to have some people that know what you feel like!!
The next great advice is that YES, you will now need to do the spine MRI and the CINE MRI. That is what you want to be trying to accomplish. My neurosurgeon explained that it gives them more information and they need to rule out tethered cord before they do surgery so that they do not make things worse.
As for the headaches.... I swear that as these head pains increased they came in all shapes and sizes!! I seem to have MANY different types of headaches and I try to treat them by what they feel like. Chiari head pains.. the ten second gripping ones I just stop whatever I am doing that is making my head angry. The Migraines I try to figure out... sometimes migraine meds help and sometimes they don't, time is making it easier for me to tell the difference, they are similar but not exactly the same. I agree with the caffine advice, I take excederine and wash it down with tea or mountain dew and that seems to help for some reason. Not great when it is evening or the middle of the night but when the pain is bad enough, a couple of excederine in the middle of the night don't sound so bad! I am very frustrated with all the head pain and sometimes just stare at the bottles trying to guess what might help... thanks to the time with the neurologist (which got me nowhere!!!) I have a wide variety of choices. The percocet that I use for my jaw and neck will help for about two hours and then it is usually worse than before but at least it can buy me some time if I need it!!
Best of luck with this process!! There is a great deal of wonderful information to be found here and I hope you get all the answers you are looking for. Sometimes it is just nice to have some people that know what you feel like!!
Hi and welcome to the forum! Sometimes a high caffine drink like mt. dew will help a little. As for otc meds, excedrin miagraine or tensiond helped me enough to take the edge off the pain. And like carolyn said, be prepared that the NL is not going to know much about chiari and in my experience will only want to treat your headaches with meds. You really need a chiari specialist! Blessings ~ Shannon
Hello and welcome to the forum!!
Over the counter..you could try Tylenol 1's (they have caffeine and some codeine in them but not prescription strength) and I also used to find that a sinus decogestant would help too. Unfortuantely, there is nothing that really takes it away..but many members here seem to find some prescription meds for migraines help. (Hopefully they will comment on that).
I am sorry that it is taking you so long to see an NL...that is very frustrating. Just to caution you...some NL are not educated very well on Chiari so if you can get a referral to a NS you will have much better success. So that would be one question I would ask to get a 2nd opinion from a NS (especially if you can find one that specializes in Chiari). My NL didn't even tell me about my CM and it wasn't until I got my DR to refer me to a NS for 2nd opinion that the Chiari was found. Also, go to you NL appt with a full list of symptoms that you are experiencing even if you are not sure that some of them are related. It is amazing what you will forget if you don't write it down. I would inquire about the possibility of a CINE MRI, which will visualize the flow of the CSF and give a better understanding if the flow is being blocked. Also, there are related conditions like Tethered Cord and EDS which you might want to ask about too. Most of the other questions I can think of are mostly surgical...so I won't cross that bridge yet!!
I really hope that you find some relief soon and let us know how the NL appt goes!
Carolyn
Over the counter..you could try Tylenol 1's (they have caffeine and some codeine in them but not prescription strength) and I also used to find that a sinus decogestant would help too. Unfortuantely, there is nothing that really takes it away..but many members here seem to find some prescription meds for migraines help. (Hopefully they will comment on that).
I am sorry that it is taking you so long to see an NL...that is very frustrating. Just to caution you...some NL are not educated very well on Chiari so if you can get a referral to a NS you will have much better success. So that would be one question I would ask to get a 2nd opinion from a NS (especially if you can find one that specializes in Chiari). My NL didn't even tell me about my CM and it wasn't until I got my DR to refer me to a NS for 2nd opinion that the Chiari was found. Also, go to you NL appt with a full list of symptoms that you are experiencing even if you are not sure that some of them are related. It is amazing what you will forget if you don't write it down. I would inquire about the possibility of a CINE MRI, which will visualize the flow of the CSF and give a better understanding if the flow is being blocked. Also, there are related conditions like Tethered Cord and EDS which you might want to ask about too. Most of the other questions I can think of are mostly surgical...so I won't cross that bridge yet!!
I really hope that you find some relief soon and let us know how the NL appt goes!
Carolyn
I don't have a lot of advice for you but I can say I am in a very similar situation. I'm seeing a 2nd neurologist in a couple of weeks since the first one didn't even tell me I had Chiari (my PCP and ENT did).
Tylenol helps my headaches some, but only if I take it the second I feel one coming on...if I wait, it's too late. I asked my doctors (the ones I could actually see in a reasonable time frame!) for medication and they gave me Valium for dizziness and caffeine pills for tension headaches. The Valium helps a lot and the caffeine pills help a little more than Tylenol does. Might be worth asking your primary care dr for something.
I hope you feel better soon!
Tylenol helps my headaches some, but only if I take it the second I feel one coming on...if I wait, it's too late. I asked my doctors (the ones I could actually see in a reasonable time frame!) for medication and they gave me Valium for dizziness and caffeine pills for tension headaches. The Valium helps a lot and the caffeine pills help a little more than Tylenol does. Might be worth asking your primary care dr for something.
I hope you feel better soon!
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