Aa
"low lying cerebellar tonsils"?
For 7+ years I've had symptoms of multiple sclerosis, but there have never been lesions on my MRIs. I recently had a 3T MRI (brain, c- and t- spine) with no lesions in sight. My MS specialist says it "looks, feels, sounds, and tastes like MS." I have a host of neurological sx: severe headaches, ataxia (getting worse), numbness, dizziness, trigeminal neuralgia (starting at 34, progressed to bilateral), and others.
I've had a headache (severe) since last February (10 months). I'm taking 1800 mg gabapentin/ day and that does help with the pain (and the TN pain, too). If I try to cut the dosage back, the headache is right there. Steroids have done nothing for the headache.
I received the MRI report and it states that the cerebellar tonsils are low lying without meeting the criteria for chiari malformation. Is it possible to have symptoms without herniation being obvious on the MRI?
I'm at a loss here--everything points to MS, but there are clearly no lesions on the MRI. I can't find a whole lot on chiari malformation, but what I've read does talk about headaches similar to those that I experience, being precipitated by pressure from straining, coughing, etc.,.
I'm not trying to grasp at straws here, but I KNOW there is something wrong and it's steadily getting worse. I just need to find out what it is... If it's not MS, great! (And it sounds like it's not at this point because of the clear MRIs.) But I need to figure out what it is.
Stephanie
I've had a headache (severe) since last February (10 months). I'm taking 1800 mg gabapentin/ day and that does help with the pain (and the TN pain, too). If I try to cut the dosage back, the headache is right there. Steroids have done nothing for the headache.
I received the MRI report and it states that the cerebellar tonsils are low lying without meeting the criteria for chiari malformation. Is it possible to have symptoms without herniation being obvious on the MRI?
I'm at a loss here--everything points to MS, but there are clearly no lesions on the MRI. I can't find a whole lot on chiari malformation, but what I've read does talk about headaches similar to those that I experience, being precipitated by pressure from straining, coughing, etc.,.
I'm not trying to grasp at straws here, but I KNOW there is something wrong and it's steadily getting worse. I just need to find out what it is... If it's not MS, great! (And it sounds like it's not at this point because of the clear MRIs.) But I need to figure out what it is.
Stephanie
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Please keep in mind I am not a dr, not is there one on this forum and we will do the best we can with related experience we have had.
First, I am soooooo surprised they did not one , look for chiari when u were dx'd with SB....many can go hand in hand......
perivascular spaces/compartments surrounding small blood vessels as they penetrate the brain parenchyma.
Basal ganglia
Function:
Controls Cognition
Movement Coordination
Voluntary Movement
Location:The basal ganglia is located deep within the cerebral hemispheres in the telencephalon region of the brain. A component of the corpus striatum, it consists of the subthalamic nucleus and the substantia nigra
Dysfunction with the Basal ganglia is often associated with MS...so do wait for ur dr to tell u more as symptoms of Chiari and MS are very similar and it is possible that chiari is affecting this area and the info only denotes MS affecting it as chiari research and info is usually outdated.
Bilateral low lying tonsils- we all have 2 cerebral tonsils...and with chiari they herniate down onto the brain stem and can block CSF and cause overcrowding which u do have.
Bi mean 2 means both ur left and right tonsil are herniated approx 9mm.
(I had one at 4mm the other at 6mm)
Moderate effacement of CSF=Effacement is the shortening, or thinning, so it appears u may have a blockage or the overcrowding is causing u to have less CSF in the spaces u should have more. A CINE MRI would be the next step as well as more MRI's on ur spine to rule out a syrinx and tethered cord among other things.
Many of ur symptoms do fit for chiari...even the goiter as many of us do have an auto immune thyroid condition called HASHIMOTO'S.....do get checked for this as well....it may also be the cause of ur bilateral galaactorrhea or u may have a pituitary issue as again several with chiari have.....
Chiari has been misdx'd as MS and fibro so testing for ur mom may be advisable.
I hope I got to all ur questions, and that this makes some sense......
we r always glad to welcome someone to our little family even tho we r not happy for the reasons that brought u to us.
"selma"
Please keep in mind I am not a dr, not is there one on this forum and we will do the best we can with related experience we have had.
First, I am soooooo surprised they did not one , look for chiari when u were dx'd with SB....many can go hand in hand......
perivascular spaces/compartments surrounding small blood vessels as they penetrate the brain parenchyma.
Basal ganglia
Function:
Controls Cognition
Movement Coordination
Voluntary Movement
Location:The basal ganglia is located deep within the cerebral hemispheres in the telencephalon region of the brain. A component of the corpus striatum, it consists of the subthalamic nucleus and the substantia nigra
Dysfunction with the Basal ganglia is often associated with MS...so do wait for ur dr to tell u more as symptoms of Chiari and MS are very similar and it is possible that chiari is affecting this area and the info only denotes MS affecting it as chiari research and info is usually outdated.
Bilateral low lying tonsils- we all have 2 cerebral tonsils...and with chiari they herniate down onto the brain stem and can block CSF and cause overcrowding which u do have.
Bi mean 2 means both ur left and right tonsil are herniated approx 9mm.
(I had one at 4mm the other at 6mm)
Moderate effacement of CSF=Effacement is the shortening, or thinning, so it appears u may have a blockage or the overcrowding is causing u to have less CSF in the spaces u should have more. A CINE MRI would be the next step as well as more MRI's on ur spine to rule out a syrinx and tethered cord among other things.
Many of ur symptoms do fit for chiari...even the goiter as many of us do have an auto immune thyroid condition called HASHIMOTO'S.....do get checked for this as well....it may also be the cause of ur bilateral galaactorrhea or u may have a pituitary issue as again several with chiari have.....
Chiari has been misdx'd as MS and fibro so testing for ur mom may be advisable.
I hope I got to all ur questions, and that this makes some sense......
we r always glad to welcome someone to our little family even tho we r not happy for the reasons that brought u to us.
"selma"
Ok, I have been dealing with my issues for nearly ten years. And they are a broad scope of issues that all fall neatly into the Chiari Syndrome and Chiara 1 diagnosis yesterday. I have 3 questions:I will quote directly from the MRI without contrast report on them-
1) what is "prominent lower basal ganglia perivascular spaces incidentally noted"
2) Bilateral low lying cerebellar tonsils about 9mm below the craniocervical junction, with moderate craniocervical crowding but no deformity of the medulla unable to determine impingement
3) FROM THE CT REPORT - Moderate effacement of the CSF
What the heck does all this mean? And more importantly would it explain the extreme bulge and sensitive spot in my cervical spine? I have been referred to MUSC neurology but whether i will get an appointment this YEAR remains to be seen. In the meantime I have serious dizzy spells, debilitating migraines, facial numbness, ear, jaw, throat pain, an goiter and enlarged liver, a flare of PCOS in my only remaining ovary, and I also have serious pain everywhere because I also have spina bifida and some sort of anomaly beside the spina bifida. Pain *****, Im miserable, and just want to know if this is all connected, and what the heck to think about all this. I cant sleep, I have apnea, but not sleep apnea that I am aware of. I have also had bilateral galaactorrhea for going on 11 years now, which is how they found this in the first place. I have had echocardiograms, colonoscopys, egds, they checked everything before they decided to scan for a pituitary adenoma and came back with this chiari business. My mother has been suffering with headaches and supposed fibromyalgia, but after reading the recent chiari studies done by Unive of Missouri, I am thinking that she probably has chiari as well. Someone interpret and help me please. Oh I am thiry four, white female. Thanks!
1) what is "prominent lower basal ganglia perivascular spaces incidentally noted"
2) Bilateral low lying cerebellar tonsils about 9mm below the craniocervical junction, with moderate craniocervical crowding but no deformity of the medulla unable to determine impingement
3) FROM THE CT REPORT - Moderate effacement of the CSF
What the heck does all this mean? And more importantly would it explain the extreme bulge and sensitive spot in my cervical spine? I have been referred to MUSC neurology but whether i will get an appointment this YEAR remains to be seen. In the meantime I have serious dizzy spells, debilitating migraines, facial numbness, ear, jaw, throat pain, an goiter and enlarged liver, a flare of PCOS in my only remaining ovary, and I also have serious pain everywhere because I also have spina bifida and some sort of anomaly beside the spina bifida. Pain *****, Im miserable, and just want to know if this is all connected, and what the heck to think about all this. I cant sleep, I have apnea, but not sleep apnea that I am aware of. I have also had bilateral galaactorrhea for going on 11 years now, which is how they found this in the first place. I have had echocardiograms, colonoscopys, egds, they checked everything before they decided to scan for a pituitary adenoma and came back with this chiari business. My mother has been suffering with headaches and supposed fibromyalgia, but after reading the recent chiari studies done by Unive of Missouri, I am thinking that she probably has chiari as well. Someone interpret and help me please. Oh I am thiry four, white female. Thanks!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
As Ray has mentioned u deff want a chiari specialist as it is not covered well in med school and many drs r not up on the new treatments or ways to dx.
With low lying tonsils u may have a herniation less than the specified 5 mm, that is not to say ur symptoms r not from it.Testing to look for tethered cord and other chiari related conditions would be a great place to start as symptoms for most overlapp and can be diff to tell one from the other.
I had surgery in May for chiari I....my herniation was 6 mm and I now have low lying tonsils at about 2 mm and I do have symptoms....mine is bcuz I also have tethered cord which is pulling down on the tonsils.
I see u r in VA, u may want to travel to get to a chiari specialist.Please see our thread with a list of drs that members have used....research all drs to find the one best for u.
"selma"
As Ray has mentioned u deff want a chiari specialist as it is not covered well in med school and many drs r not up on the new treatments or ways to dx.
With low lying tonsils u may have a herniation less than the specified 5 mm, that is not to say ur symptoms r not from it.Testing to look for tethered cord and other chiari related conditions would be a great place to start as symptoms for most overlapp and can be diff to tell one from the other.
I had surgery in May for chiari I....my herniation was 6 mm and I now have low lying tonsils at about 2 mm and I do have symptoms....mine is bcuz I also have tethered cord which is pulling down on the tonsils.
I see u r in VA, u may want to travel to get to a chiari specialist.Please see our thread with a list of drs that members have used....research all drs to find the one best for u.
"selma"
Hi,
The normal criteria for a CM1 dx is 5mm herniation, there is however a condition that some Neurosurgeons recognize called Chiari zero where the herniation is less than 5mm, there are other things that need to be considered such as overcrowding and CSF obstruction.....the best person to deal with this is a NS who is experienced in Chiari as it is not a common condition and some NS may have little or no experiences of it
Ray
The normal criteria for a CM1 dx is 5mm herniation, there is however a condition that some Neurosurgeons recognize called Chiari zero where the herniation is less than 5mm, there are other things that need to be considered such as overcrowding and CSF obstruction.....the best person to deal with this is a NS who is experienced in Chiari as it is not a common condition and some NS may have little or no experiences of it
Ray
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