Should I push for information?

[baccalynnwv]

Hello,
I am a 34 year old female living in West Virginia.
I have been going to my general physician for several years with complaints of daily headaches. The last year I have had many other symptoms that caused him to suspect Multiple Sclerosis. According to my physician, my recent MRI from May 2014 came back normal with just my regular sinus issues due to allergies. It did not show any lesions related to MS. He went ahead and scheduled a neurology appointment for the 10th of September.
I went to the hospital to get a copy of the MRI and a print out of the report to take to my neurology appointment. The report says, “There is minimal tonsillar prolapse in the order of 2 to 3 mm. This is of no significance.” And on the bottom of the form it says, “mild low lying cerebellar tonsil of no significance.”
I looked that up because I had no idea what it meant, which lead me to Chiari. Could this mean that I might be experiencing symptoms related to Chiari Malformation? Should I print off information and take it with me to my appointment on the 10th? If he refuses to look into it should I try to schedule an appointment with a specialist who focuses on Chiari?
The listed symptoms are dead on. I’ve never actually seen anything that fit how I have been feeling as much as this. (That statement totally makes me feel like a hypochondriac) One of my most recent worries is that my hands have become so stiff over the last couple of months. My left hand is now unable to open water bottles or door knobs – and I try every time just to see if I can do it again. My neck, shoulders, and arms absolutely feel useless by the end of the day. I’m to the point where I am exhausted from dealing with the neck pain and headaches. Even sleeping gives me a horrible headache. I have to scrunch the covers up under my chin to keep my head in a certain alignment.
What do you all think? Am I looking in the wrong direction?

[baccalynnwv]

Thanks for the opinions.  I didn't really see any difference either.  It will probably be back to the drawing board for me! Ah well. Thanks for the help!

[selmaS]

  I commented on the MRI...not being a Dr, but I do feel you should be able to get a Chiari specialist to  review them and offer guidance.

[kristy12]

There is no chiari (plenty of room) but you do have retroflexed odontoid. I am not sure tho if this is big enough to cause your problems.

[baccalynnwv]

I added to my profile.  I don't see a bit of difference from a normal scan. I didn't know which ones to add really.

[kristy12]

I think you could start with a few radiology opinions. Ask them to describe pathology at the craniocervical junction, CSF reserve at the level of foramen magnum, shape of 4th ventricle. You can also upload the images, maybe we could point you if there is overcrowding there.

[selmaS]

I am with you on not knowing how to upload the images....but taking a pic and then uploading it is more my speed...lol...but  then again I may also have a dinosaur of a computer too.,I do not have a smart phone where I can use it, so I am at a loss there....

Sometimes looking at your own MRI and the ones labeled "normal" on line you can see differences and usually those are the problem areas....they can stick out pretty clearly at times.....

  

[baccalynnwv]

I was just able to look at the images.  I couldn't figure out how to save them to attach though.  I was using my mother's dinosaur of a computer.  I took pictures with my cell phone though.  Lol not sure what I am looking at! I'll see if I can figure out how to upload them. I don't see what the radiologist saw,  I'm sure.

[selmaS]

Hi and welcome to the Chiari forum,

Most times the majority of Drs do not know Chiari and how we can and are affected by it and wait to see a herniation of at least 5mm's b4 they consider it significant.,..however, length is not as important as if you have a CSF obstruction or other related conditions.....

A CINE MRI would be what most Chiari specialists would want to see at this point.,...they would also look to see if it is Chiari or low lying tonsils...by asking questions like if you were in a MVS or had a injury to the neck or head....and by looking at the space in the skull....Chiari is the malformation of the skull not the herniation so that is where how it is DX'd falls apart.

Can you post a pic of your MRI or compare them to one that is normal on line?...if so I am sure you will be able to see if there is an issue like a kink in the brain stem (not straight) or a syrinx....

And that brings me to MRI's of your complete spine to rule out syringomyelia as it can form in any area of the spine, but most Drs only look at the cervical spine...not the thoracic and lumbar....then disk issues can also be ruled out as can tethered cord....testing for ICP, POTS and sleep apnea and ehelrs-danlos all should be done as well as conditions not related like MS, lymes and lupus....

This can all be overwhelming....but you are not alone....we are here to help any way we can.

Use the list of Drs to research Drs....and ask questions, and we will do the best we can  to answer them....

I do not  think you are looking in the wrong direction at all...it is good to rule it out if not find out you were right.