Aa
Am I crazy???
I have been suffering from severe, posterior neck pain and migraines (or so I thought) for about a 3 months (constantly), although intermittently for the last year or more. I always have neck pain and I live "on the verge of a migraine" 100% of the time. I am getting headaches/migraines about 75% of the time.
I am an ICU nurse, so I initially attributed this pain to the physicality of my job. But after trying so many different medications and treatments (OMT and medical massage), nothing has worked! I have recently been placed on disability because the pain is so constant and my general practitioner wanted to give me time to rest and hopefully start recovering from whatever was causing this debilitating pain. I began physical therapy and got MRIs scheduled.
I finally had brain and cervical MRIs which show a 4mm cerebellar tonsillar ectopia. I had no idea what this was and I've been researching and came across this great site. My general practitioner pulled up the report in her office and admitted that she wasn't sure what the CTE was, but did mention that I have a bulging C5-6 disk and reversal of the cervical lordosis at that level. She said that the disk bulge could be the cause of some of the pain, but that we should talk to my neurologist about the CTE. I called my NL's office and he later emailed me to say that my brain MRI was "perfectly normal" and my cervical MRI was fine expect for a bulging disk. He recommended physical therapy. He never even mentioned the CTE.
Am I crazy, or couldn't this 4mm CTE be causing my neck pain and migraines? In researching Chiari malformation (which I realize a 4mm CTE doesn't technically qualify according to most data), I'm also learning that I have other symptoms that could also be related: vertigo, blurred vision, dizziness, strength issues in upper arms, imbalance, hearing issues (feel like I have water in my ears), fatigue, etc.
If my neurologist considers this condition "perfectly normal" I am very concerned about the ignorance in the medical field. I could understand if was asymptomatic, but I have so many symptoms...isn't it worth considering that maybe that 1mm difference is not important in my case??
I don't know if I'm overreacting or if I should try to find a neurosurgeon who specializes in Chiari in the greater California northbay.
Any advise is welcome!
Thank you so much!!!
I am an ICU nurse, so I initially attributed this pain to the physicality of my job. But after trying so many different medications and treatments (OMT and medical massage), nothing has worked! I have recently been placed on disability because the pain is so constant and my general practitioner wanted to give me time to rest and hopefully start recovering from whatever was causing this debilitating pain. I began physical therapy and got MRIs scheduled.
I finally had brain and cervical MRIs which show a 4mm cerebellar tonsillar ectopia. I had no idea what this was and I've been researching and came across this great site. My general practitioner pulled up the report in her office and admitted that she wasn't sure what the CTE was, but did mention that I have a bulging C5-6 disk and reversal of the cervical lordosis at that level. She said that the disk bulge could be the cause of some of the pain, but that we should talk to my neurologist about the CTE. I called my NL's office and he later emailed me to say that my brain MRI was "perfectly normal" and my cervical MRI was fine expect for a bulging disk. He recommended physical therapy. He never even mentioned the CTE.
Am I crazy, or couldn't this 4mm CTE be causing my neck pain and migraines? In researching Chiari malformation (which I realize a 4mm CTE doesn't technically qualify according to most data), I'm also learning that I have other symptoms that could also be related: vertigo, blurred vision, dizziness, strength issues in upper arms, imbalance, hearing issues (feel like I have water in my ears), fatigue, etc.
If my neurologist considers this condition "perfectly normal" I am very concerned about the ignorance in the medical field. I could understand if was asymptomatic, but I have so many symptoms...isn't it worth considering that maybe that 1mm difference is not important in my case??
I don't know if I'm overreacting or if I should try to find a neurosurgeon who specializes in Chiari in the greater California northbay.
Any advise is welcome!
Thank you so much!!!
I would find a specialist and show him the MRI and go from there. It is not common for doctors to overlook Chiari
Thank you for all your opinions...I think it's good to hear opinions and experiences and learn. :) I'm still getting the cine MRI done, because the neurosurgeon I'm seeing does use that as a diagnostic tool.
I'll let you know what comes of it!
I'll let you know what comes of it!
Sorry but I go with medical and scientific evidence not some anonymous post by someone I know nothing about.....and I would advise others to do the same.
Cine is an important tool but is also interpreted. This is why sometimes it can give false information. I am not trying to put people off getting one. It is just a warning, that not always we can trust it and the enclosed post is a proof. I saw the radiologist report stating that the brainstem is compressed and a crowding of the foramen magnum is present. This is clearly very misleading.
I think a CINI is an important diagnostic tool and to suggest it can give false information is wrong and may put people off getting one.
Many Chiari doctors acknowledge Chiari 0 and recognize that it can be symptomatic.
Doctors make mistakes so go for a second and/or third opinion until you are confident with your doctors. Understanding your illness will help you decide who you can put your trust in....
Many Chiari doctors acknowledge Chiari 0 and recognize that it can be symptomatic.
Doctors make mistakes so go for a second and/or third opinion until you are confident with your doctors. Understanding your illness will help you decide who you can put your trust in....
http://www.medhelp.org/posts/Chiari-Malformation/So-upset-CSF-study-came-back-normal/show/2245822
I am not entitled to disclose the private conversations, but you may well contact her and ask. :)
I am not entitled to disclose the private conversations, but you may well contact her and ask. :)
Your English sounds better than most, and just fine to me!! :-)
Really??? I thought the cine MRI was kind of the gold standard of diagnosis. Well I have scheduled one and I hope I don't get false info. Do you think that a chiari specialist could look at a cine MRI and come to a different conclusion as to it's normalcy, just as they would for the regular MRI to diagnose chiari malformation itself?
I sometimes question the radiologist...some of the posts I have seen people quote their radiologist stating "cerebellar tonsillar ectopia measuring 4mm, of no concern" and I think that is not a statement that a radiologist should make, as it is an opinion, and frankly he has no idea if this is true.
The more i learn, the more confused I become....
Really??? I thought the cine MRI was kind of the gold standard of diagnosis. Well I have scheduled one and I hope I don't get false info. Do you think that a chiari specialist could look at a cine MRI and come to a different conclusion as to it's normalcy, just as they would for the regular MRI to diagnose chiari malformation itself?
I sometimes question the radiologist...some of the posts I have seen people quote their radiologist stating "cerebellar tonsillar ectopia measuring 4mm, of no concern" and I think that is not a statement that a radiologist should make, as it is an opinion, and frankly he has no idea if this is true.
The more i learn, the more confused I become....
I currently work in the breast cancer field. I am interested a little, tho English is not my native language, so forgive me if I make a lot of mistakes.The cine MRI is not reliable. Recently there was a post from a girl whose cine MRI was described as normal, her tonsils were positioned 2,7 mm below the foramen magnum, but her brainstem was severely compressed when I looked at her scans. Later on she got the confirmation of severe malformation from a radiologist.
I knew it!! :) So what is your field? Sounds like you know your stuff! Especially with relationship to the specifics of this chiari malformation condition.
So, doesn't the cine MRI give the best answer to that flow?
So, doesn't the cine MRI give the best answer to that flow?
I am :)
Everyone with chiari has somehow increased icp. You must take the film and check, whether the flow is (not)sufficient, therefore it doesn't (does) constitute your symptoms (degree of increased icp). If there is room (csf reserve) at the craniocervical junction, you probably should look somewhere else. It's kinda complicated but even neurosurgeons do false decompressions looking for lowering icp. After all it often turns out to be idiopathic(pseudo tumor cerebri).
If your brainstem looks compressed, decompression is worth considering even if you have other problems as well (chiari is not the main cause of your symptoms)
Everyone with chiari has somehow increased icp. You must take the film and check, whether the flow is (not)sufficient, therefore it doesn't (does) constitute your symptoms (degree of increased icp). If there is room (csf reserve) at the craniocervical junction, you probably should look somewhere else. It's kinda complicated but even neurosurgeons do false decompressions looking for lowering icp. After all it often turns out to be idiopathic(pseudo tumor cerebri).
If your brainstem looks compressed, decompression is worth considering even if you have other problems as well (chiari is not the main cause of your symptoms)
COMMUNITY LEADER
Hi...I mentioned ICP due to the fact many can present with it post op....and I often wonder if they had it pre op....
Sometimes the ICP can be due to over CSF production due to a reaction to a dura patch made from material other then the patients own tissue....then Drs want to insert a shunt...when it could be the patch...I have seen the shunts not help....so I find it scary they do not investigate the patch more frequently.
Chiari can be a result of having ICP.....so it is something we need to look at regardless of DX and always look for ALL related conditions.
With the issues you are experiencing anything could be at play...and all possible conditions should be reviewed....
Hi Kristy.
Thanks for the info. Those all make sense. (Are you a nurse too? :)
I'm wondering if anyone has been diagnosed with Chiari, and subsequently had ICP due to the blockage of CSF flow, and IF any of the descriptions that I give sound familiar. Does that make sense?
Thanks so much!
Thanks for the info. Those all make sense. (Are you a nurse too? :)
I'm wondering if anyone has been diagnosed with Chiari, and subsequently had ICP due to the blockage of CSF flow, and IF any of the descriptions that I give sound familiar. Does that make sense?
Thanks so much!
Rised intracranial pressure could be caused by:
- disturbed csf flow due to chiari
- not sufficient csf intake by arachnoid
- too much csf produced by ventricles
- to low blood supply from vertebral artery thus rised flow through cervical artery (due to compensation)
- increased brain blood volume blood volume due to somatization disorder ("crazyness") http://en.wikipedia.org/wiki/Somatization_disorder
just to name a few.
- disturbed csf flow due to chiari
- not sufficient csf intake by arachnoid
- too much csf produced by ventricles
- to low blood supply from vertebral artery thus rised flow through cervical artery (due to compensation)
- increased brain blood volume blood volume due to somatization disorder ("crazyness") http://en.wikipedia.org/wiki/Somatization_disorder
just to name a few.
Thanks Selma, for your advice. :-)
I am wondering about a couple things....even some of the doctors on that list don't devote 100% of their time to chiari malformations. I have done quite a bit of research and have found some good reviews for a few neurosurgeons (at least 2 are on the list) who list chiari malformations among their specialties, but I don't think any of them are chiari exclusive. They do the chiari surgeries, but I don't know how many per year...
I'm certainly not wanting or hoping for surgery at this point. I'm just really anxious to know what is causing my symptoms, whether it be this low grade chiari, or something else. I also really want to make sure that I don't get some kind of medication or treatment (like chiropractic care) that might be contraindicated.
And yes, I meant to say lumbar (not cervical) and thoracic MRIs. :-) I have those scheduled for this Saturday. I'm not sure where to get the cine MRI done, my neurologist is looking into that. I've seen some people mention an upright MRI...any thoughts or experience with that?
You also mentioned ICP...by the end of most days, I can hear my heart beating quite loudly in my head. Especially after I brush my teeth at night. Yesterday and last night in particular, my ears felt so full...it was much more disturbing than the usual ear fullness that I've had over the last several months. My hearing was quite compromised yesterday and the pounding made me feel like my head was going to explode. It wasn't a headache, per se. I do get tension headaches and (what I thought were) migraines about 60-75% of the time. I constantly have occipital/neck pain; that hasn't gone away even for one minute over the last several months, and it's almost always worse at night, and sometimes when I first wake up. I also had increased pain in the back of my head. I was somewhat dizzy, which happens sometimes; and my vision just felt off...like if I turned my head too quickly, it was a blur. It's like it flares up or something?
Anyway, did you mention ICP as a side effect of having a blockage of CSF? The nurse in me wants to understand the physiological aspect of this. :-) And, do any of those symptoms (I mentioned above) fit according to your personal experience or anything that you've heard of?
I know you're not an expert, but it's so nice to "talk" to people who have some experience in this. Thank you so much for your time and dedication to this forum!
I am wondering about a couple things....even some of the doctors on that list don't devote 100% of their time to chiari malformations. I have done quite a bit of research and have found some good reviews for a few neurosurgeons (at least 2 are on the list) who list chiari malformations among their specialties, but I don't think any of them are chiari exclusive. They do the chiari surgeries, but I don't know how many per year...
I'm certainly not wanting or hoping for surgery at this point. I'm just really anxious to know what is causing my symptoms, whether it be this low grade chiari, or something else. I also really want to make sure that I don't get some kind of medication or treatment (like chiropractic care) that might be contraindicated.
And yes, I meant to say lumbar (not cervical) and thoracic MRIs. :-) I have those scheduled for this Saturday. I'm not sure where to get the cine MRI done, my neurologist is looking into that. I've seen some people mention an upright MRI...any thoughts or experience with that?
You also mentioned ICP...by the end of most days, I can hear my heart beating quite loudly in my head. Especially after I brush my teeth at night. Yesterday and last night in particular, my ears felt so full...it was much more disturbing than the usual ear fullness that I've had over the last several months. My hearing was quite compromised yesterday and the pounding made me feel like my head was going to explode. It wasn't a headache, per se. I do get tension headaches and (what I thought were) migraines about 60-75% of the time. I constantly have occipital/neck pain; that hasn't gone away even for one minute over the last several months, and it's almost always worse at night, and sometimes when I first wake up. I also had increased pain in the back of my head. I was somewhat dizzy, which happens sometimes; and my vision just felt off...like if I turned my head too quickly, it was a blur. It's like it flares up or something?
Anyway, did you mention ICP as a side effect of having a blockage of CSF? The nurse in me wants to understand the physiological aspect of this. :-) And, do any of those symptoms (I mentioned above) fit according to your personal experience or anything that you've heard of?
I know you're not an expert, but it's so nice to "talk" to people who have some experience in this. Thank you so much for your time and dedication to this forum!
Spinal tap - lumbar puncture can actually worsen the condition, so I wouldn't recommend it until it's really necessary.
COMMUNITY LEADER
Hi...a lumbar spine MRI, .....testing for related conditions like ICP, POTS,tethered cord, ehlers-danlos, sleep apnea...and look at vitamin and mineral levels...vit D, B12, and magnesium and potassium tend to be low for many of us and can cause some of the same symptoms we deal with....
Make sure you get copies of ALL testing including reports.....
And make sure you get a true Chiari specialist...do not look at big name hospitals and clinics as a means to the best care, you want Drs that are doing their own research and their entire practice is devoted to Chiari and related conditions......
We do have a list of Drs for you to use to research Drs....it is not a referral nor an endorsement of those on the list, it is just a starting point for your research.
Do not rush into surgery...take your time and get all the testing done and take your time to find the Dr that is right for you.
Thank you all for caring enough to reply. :-)
I saw my neurologist today, and he was actually great. He immediately admitted that this was a super sub specialty for a neurosurgeon, not a neurologist. He is referring me to Stanford or UCSF and ordered a CINE MRI (although I don't think they do them anywhere is this local area) and thoracic and cervical MRIs to make sure there is no syrinx.
Can any of you let me know if there are any other tests that my doctor or neurologist can order now (that the specialist would want), so that they are done by the time I get in to see a chiari specialist??? I'm assuming there will be a long waiting period before I can get in. I don't want to wait 3 months, and then have this specialist tell me I need X test done and to make another appointment; not sure if that makes sense.
Any other advise or suggestions are welcome and very much appreciated.
Thanks again so much!
I saw my neurologist today, and he was actually great. He immediately admitted that this was a super sub specialty for a neurosurgeon, not a neurologist. He is referring me to Stanford or UCSF and ordered a CINE MRI (although I don't think they do them anywhere is this local area) and thoracic and cervical MRIs to make sure there is no syrinx.
Can any of you let me know if there are any other tests that my doctor or neurologist can order now (that the specialist would want), so that they are done by the time I get in to see a chiari specialist??? I'm assuming there will be a long waiting period before I can get in. I don't want to wait 3 months, and then have this specialist tell me I need X test done and to make another appointment; not sure if that makes sense.
Any other advise or suggestions are welcome and very much appreciated.
Thanks again so much!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
There is much debate as to what constitutes Chiari....many say a herniation of 5 mm's or more, however Chiari is the malformation of the skull which causes the herniation....and length is not as important as if it is creating a CSF obstruction.....
Some Chiari specialists do recognize Chiari 0 which is for an obstruction less then 5mm's.....
Finding a true Chiari specialist is key.,...and then more testing to rule out related conditions and issues....Syringomyelia, ICP, POTS, CCI....ehlers-danlos...
Educate yourself and know you are not alone and not crazy, unless all of us are as well,.....
hang in there
Some in the medical profession do not possess compassion or kindness. Your pain is very real and should be given consideration. I am still learning all I can about this condition; however, you mention in your 4th paragraph above, typical symptoms that could very well mean chiari or maybe a related disorder.
Do not let others' ignorance make you doubt your own body and the signal sent by pain. You are not "overreacting." You are just concerned about your health and want to get care from doctors who know that this pain many of us feel (even after surgery) is quite worthy of attention.
I really hope you can find a specialist in California, and I hope that you find someone who respects patients and their pain.
Do not let others' ignorance make you doubt your own body and the signal sent by pain. You are not "overreacting." You are just concerned about your health and want to get care from doctors who know that this pain many of us feel (even after surgery) is quite worthy of attention.
I really hope you can find a specialist in California, and I hope that you find someone who respects patients and their pain.
It's crowding what matters. Show the films to a radiologist and ask for cranio cervical junction description (size of 4th ventricle, csf reserve at the level of the foramen magnum). You can also upload the scan (midline sagittal, axial at the foramen magnum). Maybe we could show you, what to look at.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
