I am having worsening of my symptoms and a recent MRI shows my chiari worsened. I am hoping someone
can give me some advice.
I have multiple neurological problems: numbness, weakness, severe pain, degeneration in neck and thoracic,
autonomic dysfunction, palpitations, bradycardia, and too many symptoms too list. I have been mainly bedridden
since 2007. I also have degeneration in cervical & thoracic, thoracic kyphosis and scoliosis, and other back/neck problems.
Here are the problems/questions:
After years of severe migraines, I finally got a cervical MRI after falling and hitting my head/blacking out in 2012.
That was a low-field open MRI (due to my claustrophobia), so it is not very detailed, but did show 2mm tonsillar
herniation. (I also have increased CSF in head called pseudotumor cerebri). I sent my MRI and symptoms to
a chiari specialist in 2012, they said I should come in as they considered it chiari based on the mri and my symptoms. I have put it off due to the 4 hour trip and financial issues.
Now in these last 6 months or so, my symptoms have been increasing, especially the migraines, pain/pressure up the back of my head all the time, vision problems (blurry, eye jerks sometimes, I see dark spots alot in daylight, and flashing lights in the dark - this is worse with head movement) I am getting alot of sudden dizzy spells, very limited head movement - I can not look up at all or I get dizzy, spots in vision, then migraine. If I tilt or turn my head to the right, my head jerks uncontrollably and I get dizzy. If I tilt my head to the left, I get violent gagging/choking spells.
I had a new cervical MRI a couple months ago, it was on the same low-field open MRI, this one is only a year
after the first one and it shows the chiari went from 2mm to 3/4mm (note on MRI says worse on right side). It also says "low signal-to-noise ratio limits evaluation of intrisic signal of cervical cord" (this is the same machine, but it didn't say that on last one). It also says straightening of cervical lordosis, a recent x-ray said cervical kyphosis - I guess thats the same thing. It also says worsening of degeneration, loss of disc space, increase in spurs, annular tearing & mild flattening of dural sac - these are all noted from C4-C7.
My Pain specialist also said I have vertebral artery compression problems. And he thinks the chiari is compressing brainstem and spinal cord - something like that, and he has told me there is not much room in my cervical area. He told me to see a chiari specialist asap. But I cant get to one yet.
I am getting very concerned because even just laying in the MRI my neck was too straight and I was dizzy the whole time, then by that night I ended up with one of my most severe migraines, it would not let up for 9 days, my specialist even gave me stronger pain meds, it didnt help. But the migraine was different in a way that I also had the most severe stabbing through back of my left eye, it was like a knife stabbing through it with every heartbeat, it felt like something in there was going to explode, movement of my head or the slightest straining made it worse. The migraine also went through the whole left side of my head and up back of head. It eventually let up but it gets severe for a day or 2 then goes back to tolerable. But pain and stabbing behind eye is always there, it just varies in severity (this has been 2 months now). And my head pain/pressure, air-flow noise in ears, ears feel plugged, vision problems and dizzyness, head/neck/back pain, weakness & numbness in hands/arms/legs/feet are all worse too.
I do also have a hard oval lump on top of my skull that same side top of head it is hard like in my skull bone, it has been there for years and never bothered me before, so I never mentioned it to anyone, but since this new severe left-sided head and eye pain, I have noticed that lump hurts now when I press lightly and pain in left side of head always does seem to radiate from it, especially when I press on it, and it makes me dizzy when I do too.
*Could this lump have anything to do with this new more severe left sided pain and all the other increased problems? should I get it checked out?
*Any idea on why the herniation would worsen in 1 year - and more on the right side?
*Do these increase in symptoms sound like compression from the chiari, blockage of spinal fluid flow, too high of pressure on back of eye, or high CSF, or any ideas?
*Also wondering if anyone knows why this mri said low signal-to-noise ratio, what that might mean?
I would appreciate any advice, I am so worried about this continuing headache/migraine,
throbbing left eye and the dizzyness, vision problems and all the increase in my other neuro. symptoms.
Sorry this is so long, any advice would be greatly appreciated, Thankyou.