Just Got Diagnosed Today - A Bit Scared

[brendatis]

Hi, everyone.  I was diagnosed today with mild Chiari I malformation after expecting a diagnosis of a herniated disc.  So I'm in a bit of shock.  I really did not receive much explanation from my doctor.  She gave me a copy of the MRI report and is setting me up with a neurosurgeon.  She is more concerned with the syrinx at the C6-7 level.  Wondering if you all can give me more information.  Here's what I can gather from my report.

Caudal descent of the cerebral tonsils is approximately 5 mm.  Tonsils not pointed.  Subarachnoid space is visible within the foramen magnum.  The anatomic marker for the obex resides above the foramen magnum.  No significant osseous abnormalities.

A focal expansile lesion is appreciated within the cervical cord centered at the C6-7 level.   Measures just less than 2.5 cm in craniocaudad length by approximately 6-7 mm is largest transverse diameter.  Is well circumscribed and is primarily of CSF intensity.  The thoracic cord is unremarkable to level of the T6-7 junction.

They are going to do an MRI of the rest of my spinal cord to see if there are any more syrinxes anywhere and to excluse an occult tethered cord.  Also they are going to do the MRI with contrast because of the mild degree of cerebeller tonsillar ectopia a cystic neoplasm such as a hemangioblastoma cannot be excluded.

Can anyone out there put this into English for me?  Any help would be greatly appreciated!

[brendatis]

Thank you all so much for your comments.  I feel better!  I'm waiting to hear from the neurosurgeon who has come strongly recommended.  So glad I found you and this forum!

[*Stormy*]

I was just reading your comment and I wanted to caution you to make sure they don't try and dx you with Fibromyalgia. The symptoms are very common but FM is just a blanket dx for the fact that something is wrong with you CNS system in this case it is CHIARI!! The Drs just don't want to make that connection though..and they may try to write you off with FM and leave it at that. I have been through the FM symptoms and I have every single one, they have tried telling me that same thing and I take Lyrica (which is a FM drug) but I have made it very clear that I know what is causing it. In my case, I had surgery 11/2 ago so there really isn't much of an alternative. An interesting is that I have found research of people with FM that are now finding out that they actually have Chiari. So be strong and make sure you don't take that as a final answer!!

Good luck
Stormy

[Chula1968]

Hi- It is a bit scary-
selma seems to be the expert- I was diagnosed in June and my doctors have not been that helpful. Mine is 7mm below the skull which according to the neurosurgeon here is very slight. They were blowing off my pain and told me they can only treat specific things.
because of the other symptoms they are testing me to check to see if I have Lupis, Fibromyalgia & arthritis... I KNOW it is all linked to the Chiari- The nearest Chiari specialist is in Maryland- I live in Virginia-

The best advice that has been offered so far is finding someone who is Chiari Experienced.

Go to the Chiari Website- ****.org  they have down loads that assist you in understanding it, and explains it pretty well- It also tells you how to explain it to others

They will send you all sorts of helpful tips about living with it and they have a handbook.
Do Lots of research- the more you are armed with the better you can fight for yourself.

You did well by finding the site here- it has been a wealth of support :-)  

[*Stormy*]

Hello and welcome
Selma has explained it well...I don't have too much to add. One thing that caught my eye is that it said ur tonsils were not pointed which could mean that though the mm isn't a lot if your tonsils are rounded it could be causing more blockage which is really the main concern with Chiari. I am happy that ur Dr is sending u to a NS as they r the ones that u should get more info on. My advice is to research ur NS and see if they r experienced in Chiari. If not, I would start looking for one who is...this is SO important! Otherwise, I am impressed with all the testing they r doing, most of us only get that if we fight for it. U will find that u will need to be ur biggest advocate.  
Take care and I wish u the best as u go through this process. This is a great place to come if u feel alone in this!
Stormy

[selmaS]

Hi and welcome to the Chiari forum.

Chiari is a congenital condition that many times we r not aware of bcuz we get misdx'd and contribute many of the symptoms to other possible issues and bcuz the symptoms can cycle...so until the symptoms get severe or something happens that we have a MRI and it is found as a result...

Chiari is the malformation of the skull, it is smaller than normal in the area which holds the cerebellum and forces the cerebral tonsils down onto the brainstem.

Not all tonsils that herniate create an issue...u need to have a CINE MRI which is a CSF flow study to see if u have a CSF obstruction, and overcrowding.......

The statement -"No significant osseous abnormalities. " basically means there is no bone, or tissue that is creating an issue....

The last part about the "cystic neoplasm such as a hemangioblastoma" Basically is referring to the fact the dr has termed ur chiari as mild and ur symptoms do not match what he sees so far and he will want to rule out other possible conditions.

Most Drs will do this and many will rule out Lymes, Lupus, and MS as they have many of the same symptoms.

  U want to make sure ur  Dr is a true chiari specialist...so do see several and don't get upset if they brush u off....it can happen with ill informed drs.

U may find on the web that chiari is rare- it is not, Drs that r experienced and informed on chiari are what is rare!!!

  "selma"