Another doctor maybe??

[imfrustrated1978]

I got my MRI results yesterday and it states that the cellebellar tonsils extend through the level of the foramen magnum, bilaterall, measuring approx. 6mm on the right and 5 mm on the left.  The posterior fossa does not appear abnormally small. No hydrocephalus.

Associated with the pineal gland, an oblong lesion measuring 1cm.  This finding follows signal intensity of CSF other than a thin septation centrally in a near coronal plane.

Prominence of the CSF space within the sella turcica with a flat appearance of the superior margin of the pituitary gland.

I have alot of problems but my main problem is daily headaches and alot of neck pain.  When I went to my doctor yesterday he just kind of shrugged off these test results and said we would do a contrast in about 3 months but other than that didnt do anything different to help me relieve my symptoms.  I am currently take 200 mg Topomax daily but they don't seem to help much.  Do you think I may need to go foward with a second opinion?
I read a little bit about some of this wording from the MRI but I am not a doctor so I don't know if I am reading stuff correctly and don't want to worry for nothing

[selmaS]

  Yup....that is the problem Chiari is congenital and the symptoms cycle so, when u live with something ur whole life it is hard to know what is "normal" and what is actually a symptom.

I say  to look back on being a child and things u didn't like to participate in, swinging on swings, jumping, running...loud noise, bright lights,,....blowing up balloons...u name it and u may find out it was Chiari... huh, so now I get it...u begin to connect all the dots and now it makes sense.

[selmaS]

  We all know too well how Drs brush us off....we have dubbed that "the Royal Chiari Run Around"....one Dr says this, sends u here that one sends u there...ugh it is frustrating to say the least.

There are many that do not even consider Chiari as a viable DX needing treatment, this is y we suggest u research Drs and find a true Chiari specialist.

Most meds do not touch the symptoms and pain from Chiari....I was on TOPAMAX, but post op and it was great....I can see the diff with and with out it....I have related conditions so I still have HA's and joint pains....but it is not from Chiari and all the bigger issues I had have gone post op.

Just do not expect too much from this next Dr....that way u will not be as disappointed,...and u may get a surprise and find one that does know chiari...

But as I said, U r not alone, there r many of us here to offer support : )

[imfrustrated1978]

Ok I have been reading some through here and seeing alot of stuff I just thought was stuff that happened to everyone.  Here is something...Not real sure how to explain it other than a spasm maybe in your head neck area and its painful and unannounced.  Every so often I will get an uncontrolled "spasm" that will shoot pain through my head and neck.  Has anyone else ever had anything like this happen?

[imfrustrated1978]

Yes, thank you for the info.  The doctor I have now just shrugged me off and once I started researching what all was listed I started worrying (that's what I do)  But geez, who wouldn't?  I called another Neurologist today and was adviced to have my family doctor refer me for insurance assurance so I am going to talk to her Monday, she was not in today.  But the receptionist also told me that he is backbooked until July but I am hoping they can squeeze me in as a work-in if my doctor calls and bugs them lol.  

They have diagnosed me with just migraines now but I don't think migraines are my problem.  I have maybe had a few "typical" migraines but I have DAILY headaches and the Topomax just doesn't knock them.  I have asked my doctor why I keep taking medicine if it doesn't help and he just ups my dosage.  I am more than frustrated.

[selmaS]

  Hi and welcome to the Chiari forum.

I am glad u popped over here after I replied to ur other post.

We do have a list of Drs other members here have been to and liked, this list is not a referral or an endorsement, but a means to help u get started researching Drs that have treated Chiari.

All the info u listed does indicate Chiari...but more testing is needed...u need to rule out other conditions with similar symptoms, and conditions that are related,....

This will continue to be a frustrating and overwhelming journey, but u r not alone.