Question for the Neurologically Savvy

[jcrain9663]

I'm now applying for disability (LTD) and they requested copies of my MRIs. I was only too happy to oblige. Of course, After picking up the CDs, I read the reports. Here's what the interpretation says that kind of threw me a little (besides the obvious indications of MS).

"The cerebellar tonsils are 8.4 mm below the foramen magnum, the findings suggestive of Chiari I malformation."

I did some research into Chiari I and was surprised to find that I have nearly all the symptoms listed. I found that Chiari I of > 3 to 5 mm (depending on symptoms) is the criteria for surgical correction, which usually at least improves the symptoms. Chiari is also an MS mimic with overlapping symptomology.

My question is, if this were you, would you wonder if what you had was Chiari I all along, and if this should be addressed to see if surgery might alleviate or improve symptoms? I found a research paper that indicated that Chiari I was often misdiagnosed. I understand I can have both, but I'm a bit confused as to why this was not addressed or even investigated. Does anyone have any input?

I'm not in a hurry to have surgery, but I might be interested if there was at least a 50/50 chance that some of the symptoms could be improved.

[onlyairfare]

If I were you I would discuss this with my neurologist and my family doctor and see if the possibility of Chiari I was overlooked, or maybe it was considered and then other factors convinced your doctors that it was not Chiari malformation (even if the features are "suggestive").

My neurologist and my family doc both missed the (obvious) diagnosis of brain tumor on my first brain MRI for MS, partly because of a typo in the radiology report, but also because they were looking for the MS in the pictures and report, not an unexpected brain tumor. I was lucky because we had a family friend who is a neurosurgeon and he looked at the MRI report and pointed me in the right direction.

If necessary get a second opinion from another neurologist or perhaps a neurosurgeon, though many neurosurgeons will accept only referrals from another doctor, not a patient self-referral. When the first neurosurgeon I saw recommended immediate surgery, I got a second neurosurgeon's opinion before having surgery done. Brain surgery is a very big deal not to be undertaken lightly.

[mjan]

How old is your MRI? And no one mentioned this?
I would first consult with your present MS doc, then get a second opinion.

Hope it is not something overlooked but ruled out!

Let us know what they say. Best to you~

Jan

[jcrain9663]

Thank you for the replies

I definitely will talk about it with both my GP and Neuro. This was mentioned on my first MRI in 2008 and again in 2011. At first I was tempted to disregard it since no one mentioned it to me, and only looked it up out of curiosity. I only began to wonder when I realized all my symptoms are there.

I agree it could have conceivably been overlooked since they were 'looking for' MS, and the evidence was there, so they quit looking.

I certainly do not want to rush into brain surgery. Perhaps no one mentioned it because it is not clear, and may never be, whether MS or the Chiari malformation are the cause of my symptoms. A risk vs. reward sort of scenario.

Just like I was told that it cannot be determined whether my leg and foot pain is caused by degenerative disk disease or MS, and the surgeon (rightly) declined to operate on my lumbar spine. His opinion was that if he operated, the chance of improvement was no better than 50/50, but the chance of the arthritis 'spreading' upward from the surgical site was very likely.

Anyway, thanks for the opinions and I will talk to them both about this and get them to clarify it for me.

[kelm10]

the same happened to me

I had it on my original MRI, and I do not remember my neuro telling me. He well could have but my symptoms did not coincide with Chiari.

I started experiencing some different symptoms and I was concerned about a herniated disk in my neck. So, I made an appointment with a neuro surgeon. He is the one that told me about the Chiari malformation.

He ordered a blood flow MRI. The monitor the blood flow that is going to the brain while doing the MRI. This type of MRI was only available at a teaching hospital in my area.

My suggestion would be to talk to PCP and neuro. But, if you can, make an appointment with a neuro surgeon, it takes a while to get in.

http://www.msworld.org/forum/showthread.php?t=123853

This is a link to some other posts on the message board from others with Chiari malformation.

[jcrain9663]

Thanks, Mary

Very valuable information. I've had the symptoms listed under Chiari one since the beginning. But every doctor has attributed them to MS. Which wouldn't be at all unusual except that no one mentioned that I had Chiari one in the first place that I can recall.

I do remember that one of the reports indicate something like 'CSF flow appears to be intact', which may be the deciding factor for treating it as a non-entity. Still, it would be preferable to know something like this in case of other issues down the road.

Thanks again, I'll check out the other thread.

[mjan]

Good to learn that this issue HAS been looked at and addressed. I would suggest you get copies of all your records as they occur. I get office notes and radiology records. Just in case I have to see another specialist or ER from a hospital that is not connected via computer programs, I have my copies.

Also learned in getting office visit notes, that many things reported and discussed do not always get INTO the notes once dictated. "If it is not written down, it didn't happen."

Be well my friend and let us know how you are doing.

Jan