Should I be as worried as I am?

[Cajuncayenne72]

I ended up at the neurologist because the ENT thought I had MS based on my vertigo, persistent nausea, and my lack of coordination and balance. The neurologist was scary but said I have vestibular migraine with and without aura. The neuro-ophthalmologist said the blurred vision, cloudy vision and echo's were because I needed glasses. I had an MRI done 8/25/17 and was freaked out by what it said.

It said I did not have MS which was a huge relief, however it did say: The posterior fossa appears somewhat small and there is a downward displacement of the cerebellar tonsils approximately 8 mm below the level of
the foramen magnum. There is also mild associated medullary kinking.

When I asked the neurologist he said: This is a normal anatomical variant that cannot explain your condition.

So I looked it up and it was scary. I saw the CNO and talked about the MRI and my symptoms. I have migraines at least 3-4 times per week, walk like I am a drunk on a three day bender, forget things (passwords, SSN, where I am, etc), say the wrong things, lose words, have trouble swallowing, limb jerks and hand tremors.

I am waiting for the results of my CSF MRI. The doctors believe that it is migraine disorder and so far the medicine they prescribed is not helping. I honestly think that my gait, speech and thinking have gotten worse.

I know you are not doctors. I am just looking for honest answers and a reality check.

[selmaS]

Hi and welcome to the Chiari forum.
Although Chiari is not rare, Drs well informed and experienced with it are.....so the key is to find a true Chiari specialist . You will want to research  Drs in an area that is covered by your insurance and expect to travel at least a little.....
Keep in mind there are many Drs that will say they can treat Chiari BUT they really do not have the experience needed or familiar with the related conditions and how they can affect the outcome of surgery.

[Cajuncayenne72]

I am scared because I am not myself. I stutter, say the wrong word and lose words. My gait is horrible. I am a single mom with three kids. The CNO said it  made sense to check the CSF but it most likely was migraine disorder. I want to be me again. Do you think I should be worried? I don't think a medullary kink is a good thing.

[selmaS]

First, know you are not alone...we all have been where you are and were scared as well, but the more you educate yourself and research Drs you will calm down some......and you are right the kinking is not a good thing, and is most likely due to tight quarters.
Not sure what a CNO is, but doesn't sound like they are well informed on Chiari and related conditions to not at least look at CSF flow.

[Cajuncayenne72]

Sorry it should be CNP. She emailed me about the CSF study but it confuses me. I have not actually seen the results because have not posted like my first MRI. She said:

"Would you be opposed to adding another medication? Also, I just spoke with Dr. Oas and he thinks we could refer you to neurosurgery given your CSF flow study results (however Dr. Oas still thinks the results are normal and would be willing to send you just to have them discuss the findings with you).

I know this may be a lot, and please let me know what questions you have."

Is it normal to be sent to a neurosurgeon to have them tell you that you're fine?

[selmaS]

It is normal to be sent to a NS to see if they feel they can be of help....some are told not at this time..sometimes the NS will want to do more testing....I went and was not scheduled for surgery until a year after my Chiari DX.....it can take time, be very frustrating...and redundant.

[Cajuncayenne72]

Thank you. I was told today that my flow was compressed around the tonsils but was fine in all the places that matter.

[selmaS]

ANY disruption to flow can cause a syrinx to form....so a disruption is a disruption and is not fine since it flows elsewhere....sigh....you're getting advice from a Dr not well informed or experienced with Chiari.....
So you had a CINE MRI recently?

[Cajuncayenne72]

Yes, they haven't released the results to me. They just said that it was compressed around the tonsils but looked good elsewhere. They said they would send me to a surgeon for peace of mind but that I am fine.

[selmaS]

I too had Drs, surgeons tell me I was not a surgical candidate....but I am so much better since having the surgery.....Drs that are not well informed will say what they think we want to hear or what is in the realm of what they know....which is sad that they can not say they can not help but here is someone that may be able to....I would respect that so much more then the lies.....

[Cajuncayenne72]

I just got my results: Redemonstration of low-lying cerebellar tonsils with a beaked configuration. There is biphasic CSF flow along the anterior aspect of the midbrain and upper cervical spinal cord. There is mild reduction of the flow surrounding the cerebellar tonsils.

I just want to feel better.

[selmaS]

I hear you and totally understand...it's not easy to have this condition and go on with life without it interfering....