Brainstem compression

[miso1]

Hello

I recently had an upright MRI which showed that I have a 'mild/ almost' Chiari, but the real problem is a brainstem compression due to a retroflexed odontoid process.

I have a long history of- vision problems, balance problems, headaches- feeling like my head is going to explode, nausea and vomiting, memory loss, cognitive issues, ear pressure/ fullness/ popping/ pain. All the symptoms you'd expect to get.

I also have an Atlantoaxial subluxation. I have Ehlers Danlos Syndrome, my cervical spine is hypermobile.

I've been reading quite  a lot about CSF flow. and I'm wondering if anyone could explain to me how this brainstem compression would affect the flow.

Thanks

[selmaS]

  How I understand it there can be no such thing as almost Chiari....Chiari is the malformation of the skull....leaving it too small to contain the cerebral tonsils so as they grow they herniate below the foreman magmum  and onto the spinal cord obstructing CSF flow...Drs that have not spent time researching Chiari and related conditions will use the length of herniation to decide if it is Chiari or not.....

It is possible to have low lying tonsils...and not Chiari...this means a blunt force to the head or neck area displaced the tonsils but the size of the skull is normal, so the tonsils may retract on their own.....BUT symptoms may be similar to Chiari as the tonsils still may be obstructing CSF....and if the tonsils do not retract then the same type of surgery is performed in that they will either remove the tonsils or cauterize them.The laminectomy is generally not needed for this type .

My odontoid was not fully retroflexed so my decompression helped me...mine was not pressing into my brain stem but bcuz it was not in the correct position it did cause more obstruction to my CSF flow....my herniation's were 4mm and 6mm's so not large by any means and for some Drs would not have considered it Chiari...this is why a true Chiari specialist is needed.My tonsils were cauterized and I had a laminectomy of C1 and C2...and a dura patch with tissue harvested from my scalp.

I also have CCI and was told I would need a fusion at some point....but I was very determined post op to not need another one anytime soon so I did my neck exercises and still do them and I feel I built my neck muscles up so that it is more secure...so I have not had the fusion.

[miso1]

Hi

Thanks for answering!

Could you explain the difference between Chiari and herniation please?  

All I've got is this (I asked on another forum and they said it meant I have an 'almost' Chiari)-

'My cerebellar tonsils are lying lower than normal and just extending through the foramen magnum.

But the degree of cerebellar ectopia  is within normal range

I have a very mild degree of cerebellar tonsillar ectopia with the tonsils lying within the foramen magnum'.

All I've got is a report, and I'm not sure what a lot of it means.

I am seeing a Neurosurgeon about the Brainstem Compression as that is what they are most concerned about.

Yes, it also seems they are saying I have CCI.

I hope you don't mind me asking- do you also had this retroflexed odontoid? How has it affected you? Have you had treatment for it?

Again, thanks for answering.

[selmaS]

@miso1- Hi and welcome to the Chiari forum.
The best way I can explain this is to borrow the way mt Dr explained this situation to me.....using your left pointer finger slightly bent pointed at yourself.....and the using your other hand make a circle with the right pointer finger ( as if giving the ok sign)- slip the left pointer finger into the circle...you will notice some space around the finger..//slowly rotate the left finger left..until pointing away from you. Notice the space in around the finger disappear....this is what happens with a retro flexed odontoid....now add into that the cerebral tonsils..and to say mild Chiari drives me crazy...as that is referring to how large the herniation is not if you have Chiari....ugh...Chiari is the malformation of the skull and not the herniation....regardless the herniation will also clog up the area btwn the spinal cord and brain stem.Hope this helps/
With EDS and the Atlantosaxial subluxation..I would also guess you have CCI.....cerviocranial instability.