I know most symptoms of Chiari Malformation are related to the blockage of spinal fluid flow. However, I would like to know if the herniated tonsil can directly compress the cranial nerves located near it? Specifically cranial nerves 9 (glossopharyngeal), 10 (vagus), and 11 (spinal accessory). Also is there any kind of diagnostic test to diagnose this kind of compression?
Well my herniation is not that large (8-10mm depending on which MRI you look at). I have no syrinx and a CSF flow study showed "turbulent flow" but no obstruction. I do have a herniation at C5-6 and I believe that it is causing problems, I don't think it can be causing all of them. For all of those that have had surgury, I basically feel like right after you wake up from it. This has been 24/7 for the last 15 months.
I would even tend to agree with the doctors about the herniation not causing symptoms except that my herniation is on the left and most of the pain and more severe symptoms are also on the left. I have been through more than 100K worth of tests with no answers and no relief.
HI...may I ask is ur dr a Chiari specialist?....sometimes the thought that the chiari isn't causing symptoms is from a NS or dr that is not well informed on chiari.
Chiari 0 is a crowding of the brain with no herniation and it can cause more symptoms than large herniations do.
Everyone is different and the size is not what the dr should be looking at .....they also need to see if u have a CSF blockage....and turbulent flow...??? means what??....did the dr clarify this?
Were u also checked for tethered cord?
8 - 10 mm is a large enuff herniation to consider surgery with the right dr.
I have actually seen Dr. Oro. When I was there we did not have the MRI report, just the images. A few weeks after I got home I got the report and noticed the turbulent flow. I have been trying to get in touch with him for over two weeks for clarification and have not recieved a phone call yet.
I was not checked for tethered cord, but from looking at my MRI's it doesn't look like others I have seen that have it. I am not a doctor though.
The reason I think that the Vagus nerve is involved is because I have heart palps., severe stomach pain, gastroparesis, and trouble breathing (I think from the pain, but I don't know). This all started when symptoms started after a small wreck. Before then I had not had health problems so no MRI. Everyone seems to think that this is incidental, but cannot offer any other diagnosis.
I am trying to get into TCI but will have to wait until March. I am losing the will to fight, the pain has just been so bad for so long. Nothing touches it.
Dr Oro is one of the best!!......mayb he was on vacation?...did Dr Oro dour surgery?
U have MRI's of ur thoracic and lumbar spine ?
I also get heart palps....had my heart checked.....I also have IBS....and other gastro issues.....and I am a mouth breather....have been all my life....everyone says there is no connection, but if I close my mouth I feel like I am being suffocated.
Y would u change from Dr Oro to TCI?.....If u r close to get to Dr O....I would pursue that....he is one of the drs I spoke with and he gave me great advice as to what testing I needed and how to approach all this.....I wish I could get in to him!
I also hear that he is one of the best that is why I went to see him. I live in Louisiana so I am close to neither. I would love to pursue something with Dr. Oro, but he will not call me back.
It's not that I "get" heart palps. I have them constantly, 24/7. I have been to 3 cardiologists, one at the mayo clinic and they all say that my heart is fine and I agree. But there is something that is causing my to painfully feel my heart beating at all times. Can you imaging someone poking their finger into your chest and head 80-100 times a minute 24 hours a day for 15 months?
I don't think my symptoms are all related I know. The pain in my head, neck, chest, stomach, and arm is the same type of pain and if one gets worse they all do.
Not one doctor that I have been to has taken an interest into finding the cause of my problem. Every test that I have had run I have insisted on running. They keep telling me what they think it isn't and stop there. Not once have I heard, "this is negative, let's try this".
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