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Optoc Neuritis
I have had three bouts of Optic Neuritis in the last 3 years. The keep telling me that they think I have MS. I have had 6 MRI’s and a Lumbar Puncture that have all came back negative for MS. On all of my MRI’s a Chiari 1 Malformation has been present, my dissention is 8mm and I have been suffering from a headache which feels like a severe pressure headache for almost 2 years now. The head is there 24/7, it never goes away. I have been sent to the head clinic here where I live and they have tried every medication under the sun. I had Botox injections on April 3rd but it didn’t make anything better, if anything they have been worse since. My doctors seem hesitant to blame my issues on Chiari since it doesn’t cause Optic Neuritis. Has anyone else experienced Optic Neuritis with Chiari. I keep getting told that my dissention is minimal and usually doesn’t cause problems when it is that small. I told my doctor that is was also not common for a 19 year old to have 19mm dissention my cousin did so maybe it causes problems in my family….
Here's an interesting article. Speaks to the connection between Chiari and optic neuritis. The website does not state the author of the article.
http://www.upright-health.com/optic-neuritis.html
http://www.upright-health.com/optic-neuritis.html
pseudotumor, try googling this, i had optic neuritis and found i had a chiari 1 malformation while they looked for MS, no MS but i have the same issues, had a spinal tap, they took 4 jars of spinal fluid out and i felt amazing, so much better, then a few days later i felt the same headache awfulness! the pseudotumor is i make to much spinal fluid and it builds up all the pressure in my brain, thats what caused the optic neuritis, on top of the chiari explained everything, it normally occurs with extreme hormone changes, like being put on birth control, irregular cycles, getting pregnent, giving birth, those kind of things
This was exactly how they found my chiari! I ended up with optic neuritis and they were looking for ms. The docs told me the chiari couldn't cause the vision problems but everything I have read says otherwise.
Do you know if neurosurgeons have ruled out Basilar Invagination? Basilar Invagination is a rare disorder where the odontoid (C-2) is tilted inward, called a retroflex odontoid. The angle of the odontoid causes pressure on the clivus which results in pressure on the brainstem. This can result in a number of nurological problems and cause secondary conditions, including Chiari Malformation 1. Many of the symptoms of Basilar Invagination are very similar to CM1 - headache, neckache, dizziness, swollowing difficulties, gag reflex problems, etc.
If Basilar Invagination has not been ruled out, it could be that your Optic Neuritis is a result of this. The Cranial nerve VI arises in the pons, travels through the subarachnoid space where it ascends the clivus and enters the cavernous sinus. If the clivis is offset due to a retroflex odontoid it could be in such a position to cause damage or pressure to Cranial nerve VI. Damage to Cranial nerve VI can result in various facial palsies, gaze (eye) palsies and Optic Nuritis.
I am not a neurologist or neurosurgeon, just a parent of a child with CM1. I just recently discovered that she has Basilar Invagination and that could be the cause of all her problems. Unfortunately, the procedure for correcting this problem is not as easy as a posterior fossa decompression, which would, most likely, make matters worse.
My daughter's symptoms are very similar to yours, and she may have optic nuritis, but we cannot be sure, as she is only four and may not be able to recognize that problems with her vision are not normal. She does have sixth nerve palsy resulting in intermittent facial palsy lasting for a few seconds and lateral gaze palsy. Sixth nerve palsy, as the name suggests, is associated with damage or pressure on Cranial nerve VI, which can also result in optic nuritis.
Her MRI's were seen by no less than six different neurosurgeons and neurologists before one noticed that the pressure on the brain stem was due to Basilar Invagination and not CM1. In fact, he said her cranium and cerebellum are normal. Her Chiari is secondary to Basilar Invagination and not due to a small cranium or oversized cerebellum.
I suggest you ask your neurosurgeon about Basilar Invagination and even have a spine specialist review your images.
If Basilar Invagination has not been ruled out, it could be that your Optic Neuritis is a result of this. The Cranial nerve VI arises in the pons, travels through the subarachnoid space where it ascends the clivus and enters the cavernous sinus. If the clivis is offset due to a retroflex odontoid it could be in such a position to cause damage or pressure to Cranial nerve VI. Damage to Cranial nerve VI can result in various facial palsies, gaze (eye) palsies and Optic Nuritis.
I am not a neurologist or neurosurgeon, just a parent of a child with CM1. I just recently discovered that she has Basilar Invagination and that could be the cause of all her problems. Unfortunately, the procedure for correcting this problem is not as easy as a posterior fossa decompression, which would, most likely, make matters worse.
My daughter's symptoms are very similar to yours, and she may have optic nuritis, but we cannot be sure, as she is only four and may not be able to recognize that problems with her vision are not normal. She does have sixth nerve palsy resulting in intermittent facial palsy lasting for a few seconds and lateral gaze palsy. Sixth nerve palsy, as the name suggests, is associated with damage or pressure on Cranial nerve VI, which can also result in optic nuritis.
Her MRI's were seen by no less than six different neurosurgeons and neurologists before one noticed that the pressure on the brain stem was due to Basilar Invagination and not CM1. In fact, he said her cranium and cerebellum are normal. Her Chiari is secondary to Basilar Invagination and not due to a small cranium or oversized cerebellum.
I suggest you ask your neurosurgeon about Basilar Invagination and even have a spine specialist review your images.
I am going to insist that they send me to the Chiari specialist here in Calgary. I am not denying the fact that I may have MS, but all 3 of my neurologists have told me that MS will not cause the headaches I am having. I know at one point they were concerned that I had a pseudo tumor but that also got ruled out.I am just at the end of my rope as I am tired of having this constant headache and want to be able to have this taken care of as my husband and I would like to try and have a family. I realized that I didn't give all my medical background either. June 2009 I suffered a complicated miscarriage that went on for 6 weeks. While they were testing me for MS the discovered I had Thyroid cancer and I had a total thyroidectomy in July 2010. I also see that my typing ***** as I stated my cousin had a 19mm dissension but it was actually 29mm. I have tried to do as much research on Chiari as I can but I am glad to have found a support group online to get more answers!!
COMMUNITY LEADER
I do not like to disagree, but we have had a few members that have had this issue and not had MS....the most important issue is she needs to have it looked at by a specialist....
And we also had a few that did in fact have both MS and chiari....
Hey, Julia - a Chiari malformation will not cause optic neuritis. ON is caused by an inflammation of the optic nerve. So it's quite possible to have both a chiari malformation and MS.
It's true that you don't present typically for MS. MS manifests itself in many weird ways. Some people have lots of lesions, some have a few, and some don't seem to have any visible lesions. However, their total brain volume is smaller than a typical adult's, so they're actually suffering some atrophy.
Hope that helps!
It's true that you don't present typically for MS. MS manifests itself in many weird ways. Some people have lots of lesions, some have a few, and some don't seem to have any visible lesions. However, their total brain volume is smaller than a typical adult's, so they're actually suffering some atrophy.
Hope that helps!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Yes, ur Chiari can in fact be the cause of ur issues, and the fact u do not have a true chiari specialist to help u is yet another problem u r having.....
There r many Drs out there that do not understand how chiari affects us, and once u have the dx u need to find a true chiari specialist....see our list of Drs to use to help u do research...
Again, it is not the size of herniation, but how it is affecting u, it can be small but still causing a CSF obstruction...u may also have a related condition and u do have to have tests to find out and rule these things out to know just what is going on.....
When u look at the list of Drs, u will have to go to the Health Pages list for the Drs in Canada....the link to the Health Pages is at the bottom of this page.
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