Don't really have a question just new

[flutterbye1981]

Just new here. Diagnosed with 11.2 mm herniation Chiari 1 Malformation in december 2012. Finally got into a Nerosurgon 2 weeks ago he put me on topamax (not sure i like that med) and ordered another mri on my neck and a nerve test on my arms? Not sure what that is about? He said something about checking for other things before sending me in for surgery and said that most people with this size of tumor end up having surgery. So I play a waiting game and See I guess. Really kinda nervous.

[selmaS]

Yeah I had a increase in HA's too when I started the TOPAMAX but it changes them, u have to give it time....u will see what I mean....

It is pretty standard to have the nerve conduction or EMG testing...rules one more thing out...and confirms Chiari.,

[flutterbye1981]

I have not had a CINE MRI or any on my spine he did order another one on my neck said to check for spinal abnormalities so maybe i don't know waiting to hear on when that appointment it scheduled. as far as the topamax goes it seems to be causing my headaches to be worses and yes alot of side affects. I hope it tapers off soon.  My arms, legs ,and hands all go numb alot so i'm guessing that is why he is ordering the nerve test. It seems thi medicatcation has my sysmptoms flared alot more than usual.

[selmaS]

  Hi and welcome to the Chiari forum.

As frankie said ur Dr is smart to rule out other issues b4 rushing u into surgery.

As a matter of facts, the herniation is not a tumor...but a tonsil that herniates as a result of the space inside the cerebellum portion of the skull being too small.This is a congenital condition.

For some, the herniation is formed after a blunt force to the head, in this circumstance it is an acquired condition, but many times will be treated the same way.

Have u had a CINE MRI, or MRI's of the rest of ur spine?

The nerve test is most likely an EMG to see if there is a physical reason for numbness and weakness, must be a symptom u reported to ur Dr.

As for TOPAMAX, it can be very effective for this head pain, however, it takes 2 weeks to adjust to this med...u may feel more tired and disoriented , but once u get past the 2 weeks u will  see the benefits.

Keep in mind, it is not how long the tonsils are but if they r restricting CSF flow...so make sure ur Dr looks at this and ALL related conditions as they will affect how u feel and heal should u decide to have surgery.

[frankie_rush]

Hellol and welcome to our litle piece of the internet world.  I had a 12MM hernination.  Your doctor is smart on checking for other things that you may have our how much this is done.  The nerve test for your arms is checking for other things but also to see if numbness is present.  I was diagnosed in May 2012 and had surgery July 2012.  I glad I did cause alot of my symptons is gone, not saying they wont come back but for this moment they are gone.  It sounds like you have a good doctor, listen to him and don't be scared to ask questions, cause the stupidest question is the one not asked.  It is normal to be a little scared cause that shows you are smart.  So let us know how everything goes.