MRI picks take a look see

[none123308]

I got my MRI photos today from records. I spent a better part of the day looking up MRI photos online regarding people with Chiari. Most of those are really big herniation and mine is only 5mm. I also noticed that most of tonsils are mostly pointed. I was wondering if you guys could look at mine and tell me what you think. I don't expect any to try and diagnose me. I just want some general opinions.

I called a specialist today to try and get this MRI looked over. But they said that I needed to go through my doctor and then a neurologist. Only after I had everything else that this disorder could be resolved then I could call the neurosurgeon. I was hoping that neurosurgeon would order my tests and make the proper diagnosis. I have an appointment with a new primary care doctor on Thursday. I'm hoping I can get an appointment with a neurologist so I can get this diagnosed properly. I also want them to have the proper tests taken. Thank you all for your time,

[none123308]

Zygy2, thanks for your comment. I went to my new primary doctor today. He seemed to listen to me. It was depressing watching him look up Chiari Malformation on his computer. He had never even heard of it before. He looked up the tests that I said I wanted to have done. For example, the cine MRI and the lumbar MRI. The first thing he said was that those tests would cost a small fortune and my insurance probably would not pay for it because it is rare condition. He said that each of the scans would cost at least $2,000 each and the lumbar MRI had like 3 scans alone.

I know my insurance is not going to cover it. My MRI says its incidental at 5mm. So there is no way they are going to pay for it with that type of dx. He told me that he would refer me to a neurologist. I have an appointment August 15th. I feel like I'm SOL at this point. He says I have neuropathy and I'm worried it is going to get worse. I'm so tired of seeing useless doctors. I feel like I have to diagnose myself and then try and get them to approve the tests. This is exactly what happened with my sleep apnea. I suffered so much because of that and them telling me I was just depressed. I had to start falling asleep driving before I could get someone to listen to me. I still do not know what is causing my sleep apnea. I'm not overweight or middle aged. Why would that happen all of the sudden? I never had it before?

If my original MRI would have made a proper dx, I could have had a chance. Now, Its going to be a struggle just to get a dx. Hopefully, I can get the neurologist to listen to me in August and maybe he will order some tests, and if I'm supper lucky my insurance might pay for it. HA HA this is the lamest disorder ever.

Thanks for your information about going directly to the NS. I don't know if my insurance will cover me seeing a specialist. The closest specialist is in Seattle, WA. I don't even know if the doctor is in my insurance network. I'm starting to get the point why it is better to skip the primary and go to the source. But I still don't see how I can convince my insurance to let me see the specialist when I don't even have a diagnosis or anything. This is so frustrating.

[zygy2]

Cool additional pics :)  What you are looking at is the crowding at different angles going into the spinal canal.  You are looking to see if there is space for spinal fluid to flow.  If you browse through profiles of people that are posting you will find even more pics to compare to.  Look at Christianirc, that MRI looks SO CROWDED and also a lot larger herniation but they do say that size of the herniation does not matter but you can really see how crowed and tight the back of the head is.  Chiari is pretty easy to look at so the more you look at the faster you will learn what you are looking at.  I find it very interesting to look at the MRI's.  Your other view are good, you can see the herniation in the views looking from the back of the head, they look like they do take up the space.  Of course I have no medical training, just a year of looking at these things on line!  The other view is harder for me to see and understand but I know that when I talked to my NS he said this is the most important view for him.  I just don't know enough about what I am looking at.  I guess just seeing that things are packed into the spinal canal!

You are going to have to make the choice if you are looking for a surgery!  Even if you find a surgeon that WILL do the surgery he is going to ask you if you want it, it will be elective.  You have to know if you feel that this is worth doing and that you have enough issues that you can't imagine not trying to make life quality better.  It is not an easy choice for anyone, regardless of how many issues you have it is hard to choose a surgery like this.  A primary care doctor is not going to know much about Chiari but can give you the referral, the next step might be a Neurologist but for me that was wasted time and actually worse than the PCP.  You need a NS to learn more and figure things out but you should not feel like you are choosing surgery if you visit one.  It should be to get a second opinion, learn more, and have someone that is going to track you along your Chiari journey so that if things progress to where you want surgery that there is someone there to help!  Remember that the person scheduling has NO IDEA what you are going through and they are not the NS, make the apt. and talk to the doctor,,, they can't make you have surgery.  Just go and find the answers that you need.  A good NS that knows Chiari should be able to help you figure out what problems may be the result of Chiari and it sounds like this is what you are looking for!

[none123308]

I put some more pictures up . I did not really know which ones to put up. Honestly, I do not even know what I'm looking at. zygy2, I picked a few pictures I thought looked like a similar view to the ones that you have up. Jenshead, thanks for the info on the Wisconsin Chiari Institute. If I don't get any luck with my new primary care doctor tomorrow, I will see I could send my films to someone. Selma, thanks for looking at these for me.

I was kind of worried when I contacted the nero in Seattle yesterday. I was not trying to advocate surgery for myself. I just wanted to have someone look at my MRI who knew something about the disorder. But from what I got out of the conversation with the doctors scheduling person, they only want to talk to you if you are ready for the knife. I'm not even trying to think about that. I don't even know if this is a big enough problem yet. So, hopefully I'm not going to be wasting my time just talking to a primary care doctor. I wish I could just talk to a neurologist or someone like that but my insurance will not let me without the primary care doctors referral.

[selmaS]

  What u all need to also be looking at is not just the herniation....u want to know about overcrowding...or the position of the odontoid....this is very important bcuz the smallest of herniation along with the opening made smaller by the change in position can also affect flow and cause pain bcuz it will put pressure  on the brain stem.

Diff views r needed for sure...diff slices.....

    "selma"

[zygy2]

Hello :)  I checked out the MRI photos and wondered if you have more views?  My neurosurgeon said he uses the cross cut view the most.  I have posted three different views in my profile if you want to see the chiari from different cuts.  You can see the blockage different ways and it is quite interesting.  I am not sure that I can see enough of yours to tell how blocked you look.  There does appear to be some CSF in that area?  Multiple images will help you to see what is going on.  Sorry you still have to try and find someone to take a look.  I think somewhere on the board there were places you could send your images to have someone take a look??? Could be an option if you can't get a neurologist to listen.  You can start with the neurologist and maybe it will go well for you, there is always a chance :)

[jenshead]

Yours looks like mine.  I have a 4mm herniation.  I think for those of us with small herniations, a CINE MRI is important since it will show if there is any impact to CSF flow.

I am sending my scans to Dr. Heffez at the Wisconsin Chiari Institute.  He reviews scans for no charge. Might be worth giving them a call if you are having problems with your doctors.