Updates

[jennylynch]

Here is what my mri reports said on 1/7/11

there is a downward herniation of the cerebellar tonsil by approximately 12mm most consistent with Chiari 1 malformation. There is NO syrnix at this time.

Next report from 1/10/11 from mri scan
alignment is maintained. there is mild degenerative changes at the T3- T4.

Today I had my mri of my head. I am so sick of all the testing. I am so thankful I have a group of people who have been through all this and can help me through it. The scan pics i placed were from today i have to go get the ones from before because i asked for them and they did not get them on this cd for some reason.

Last night i had a bad night at college i had a black out and its weird because earlier in the day one of the kids in my class and i were discussing what was wrong and i told him about the blackouts. later that night at another class him, i and a couple other girls and just got down the stairs and i blacked out. the kid i told about it was right behind me and grabbed me before i hit the ground and held me til i woke up then carried me back to class.
Today while at the hospital having my mri waiting in the wait room oops out i go again. i wake up and the r bringing in a bed and already have a bracelet on me and said they were keeping me.. i flipped out said i couldn't stay no way that this came with my condition and the odd thing is they called and on call and asked and they said i was fine to go and not to hold me any longer. wooo i thought i was staying. but i guess two public blackouts are telling me they better get moving on this soon.

[jennylynch]

I agree i think i have no choice but to do the decompression surgery. I am honestly starting to believe as the list of symptoms begin to grow more and more in the last 6 months things have gotten worse seems like every day. I am going to one dr on the 8th and if i dont like him i will go to another I dont care anymore if my insurance approves it or not.. i am willing to let the bills rack up as long as some of this goes away. SpaceyStac if you look at my first post it will list most of my symptoms. I have kept a list of everything and i am on top of everything to give the NS.   http://www.medhelp.org/posts/Chiari-Malformation/im-new-to-all-this/show/1442610?personal_page_id=1984262#post_6570540 that is my first post

[Spaceystac]

It is very likely that this is the cause of your pain, however I dont know where about your pains are but if your like most of us you are likely to be effected broadly with widespread pains.                   These conditions can often be linked to a number of other conditions like tethered cord and connective tissue disorders, even over diagnosed Fibromyalgia.   These are very rare conditions, but not rare in chiari patients. Finding educated doctors and people for that matter is just as rare. It can be very hard to find doctors that understand what this is, and does to a person.    I hope you seek a specialist opinion if you plan to opt for a decompression surgery. With your black out history, it may be unavoidable.

[jennylynch]

thank you all with all my symptoms would the 12mm be one of the reasons i am having all these symptoms and pain and things

[Spaceystac]

I read a little about the liver thing and It can be just that it appeared lower intensity then the surrounding tissue and that can be due to the scan not viewing that area properly (sometimes there are spots on mri that just dont come out clear, just like normal pictures).
I would try to not worry about it too much, but bring it up with your doctor and they can determine it there is some testing needed to be sure it isnt something that needs to be addressed.

[selmaS]

  Oh...ok...well that would make sense then...I did not catch that.

The 12mm is the length of the tonsils that they r below the foreman magnum....the length is not as much a concern as the shape (width) and if it is creating an obstruction.

[jennylynch]

thank you

[Spaceystac]

12mm downward herniation is referring to your cerebral tonsils and how far they go past your forman magnum or posterior fossa. In the bigger picture of things, what really count is you have a lot of crowding which is blocking the appropriate amount of CFS flow.   I think you should go watch the video on The Chiari Institutes's website, it is very educational. They really explain everything in a easy to understand way.
You question is in no way stupid hun, you need to understand this stuff you can help be your own advocate and help others help you.  

[jennylynch]

Selma that is for the liver the 8mm thing...

So i have a major question.. with the downward herniation of 12mm what does that mean?
This is all so new and I know nothing really about medical except the things that i have already been through which is alot but nothing like this. sorry if i have stupid questions just so hard to understand all this stuff

[selmaS]

   Hi...I looked at ur MRI's but I could not see nething, not sure they r the right slice.....and I have no idea how to tell u who to locate the right one, except to look at some of the others and look for one similar is the set up in ur collection as I know u have many to choose from.,

And the No syrinx is only for the area MRI's....as they can appear in areas other than the cervical spine.....such as the thoracic and lumbar spine....I wish I could tell u about the 8mm area of low attenuation of the posterior right lobe....everything I found trying to look it up  refers to liver issues......I am sure the info is out there, I just could not find it.

"selma"

  

[jennylynch]

oh and not sure what this means but there was this too...
there is a 8mm area of low attenuation of the posterior right lobe that is difficult to characterize given its small size...
Not sure what the heck that means... but hope its not something else going on