Chiari Malformation and Syrinx...what to do?

I am new to this thread business but it seems like you might be able to help me out a little bit. I recently busted my head open and went to the emergency room to get staples. I did not receive any scans but a couple days later I started feeling dizzy and nauseous. I went back to the ER and received a cat scan and the ER doctor told me that my head CT was fine but they did find something that could possibly be a Vestibular Schwannoma and I needed to get an MRI. I went to a doctor the following day that gave me an MRI on my spine and did not see anything. I sent my CT results to my doctor and somehow my CT results did not show anything either. I have been trying to get ahold of my ER doctor to see where he came up with it but I found other things in the process. for years I have had headaches...nothing excruciating...and a pain in my neck that shoots down my shoulder. I also have frequent pain in my back and was told I had scoliosis when I was younger. When I got my MRI results back yesterday I saw that they mentioned my cerebellar tonsils appered slightly pointed and protrude approximately 6mm below the level of the foramen magnum. Also there is a 1mm diameter linear focus of increased T2 signal within the cord extending from the lower C4 to lower C5 level which is located slightly to the right of midline. Which is says is suspicious for a small syrinx. The doctor did not mention any of this to me. I am at a complete loss with what is going on and I would really like to know if you have any information that might could help. I also do not know if any of this is worth seeing more doctors or not. Please help if you can. Thanks.

[selmaS]

Hi and welcome to the Chiari and syringomyelia forum.

I did reply to ur PM and wanted to publicly welcome u to the group here.It does sound like u will need to start searching for a true chiari dr....not knowing where u r from , I can not suggest certain drs to look at, but we do have a list u can use to begin ur search...do research all the drs, the list is not a referral list.-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Many of us have surgery to prevent the onset of a syrinx, which u already have...so u do need to get to a true chiari dr. A syrinx is a good indication that u have a CSF blockage.

Let us know what we can do to help, but start by finding good drs near home as well as u will need them too!!

"selma"

[alweaver]

Thank you so much for your reply and yes I am now realizing that I do need to find another doctor and figure this out. I hate that people are telling me nothing is wrong with me when it states right there on the MRI there is something going on that is not normal. I am still waiting to hear back from the ER to find out why one doctor told me I had a possible Schwannoma but yet my CT results do not show anything. This has been a very frustrating past couple of days. I am located in Dallas, TX so it looks like teh closest doctor to me would be in Houston. Thank you so much for your help.

[selmaS]

No worries...do be sure to check out that dr to see if he is indeed able to help u with both  the syrinx and chiari....the list is compiled from members and not all drs r  or may be what u may u r looking for..as we all have diff needs.

"selma"

[Spaceystac]

I so sorry to hear you have to go through it like this, but its good you are smart enough to do your research. That is going to help you a lot. I believe Texas has very good doctors for this, so you shouldn't have to go far.  These things seem to happen more than not for some reason.  Doctors get your reports and they pick and choose what they want to tell you. It isnt right. That is why you have to be your own advocate and take charge like you did.