Chiari Online Support Group

Confirmed diagnosis!


#1

After a few weeks of waiting (and a rough night at our hotel last night), I saw my new Neurosurgeon this morning, Dr. Ashraf Samy Youssef, at the University of Colorado Hospital in Aurora.

Along with the paperwork they gave me to fill out at the clinic, I also had 5 pages of information typed out for them that includes all my symptoms, current medications, past medical & surgical history, etc. His nursing assistant and PA were very grateful for that, as it would make it much easier when doing their documentation.

After they reviewed my symptoms, history, and my MRI, Dr. Youssef is convinced that I do, in fact, have Chiari, as I have strongly suspected all along based on all my research. He actually pointed out something interesting on my MRI that I was not aware of before. At the base of my skull, there is supposed to be a curve in that part of the bone, but instead, that part of my skull is flat, so that's what's taking away the space for my brain. I had no idea about that, as it had never been brought up to me before. I've added a pic here to indicate what exactly he pointed out to me.

Dr. Youssef also answered a lot of my questions right off-the-bat without me having to ask him, and his PA gave me a business card with their direct office number if I have any other questions. He's ordering a Cine MRI, and he has offered me the posterior fossa decompression surgery. I know it will be a risky procedure, but at this point, after having to deal with other treatments that have failed, I'm willing to go ahead with the surgery. It would just be a matter of when, and then making sure we have a plan in place for before and after.

I am grateful that I pushed my doctor to put in a new referral, because now I have a good doctor who is actually listening!

29-MRI8282015skullnote.jpg (100 KB)

#2

I'm happy to hear you've found a good doctor! :)

Thanks for telling us about the skull being flat and causing crowding! I had not heard about anything like that.


#3

I hadn’t heard of anything like this either, so it was a bit surprising to me.


#4

Have you had the surgery yet? I’m in Utah…didn’t know any Chiari doctors were in states close to me like CO. Curious if you’ve had it and how it went.


#5

Dr. Youssef did my surgery that same year (2016). I was doing better for a while, but unfortunately, most of my symptoms have returned, and some have become worse. Dr. Youssef, unfortunately, does not specialize in Chiari specifically. However, I will be seeing Dr. Oro in Aurora next month for an initial series of appointments. He came out of retirement last year and opened up a new Chiari clinic at the Medical Center of Aurora, so I’m excited and nervous at the same time about it.