Worsening Symptoms & New MRI results

[angelize]

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.

[selmaS]

  Do look at the list of Chiari Drs we have posted and use it to research Drs....and do ask about ne u consider going to , to get some feed back b 4 u decide who u will go to....I also suggest u get the opinion of a few Chiari Drs to see what the best course of action for u is and which Dr u feel the most comfortable with.

[angelize]

Thank you so much for the info. I realize most doctors dont acknowledge chiari until it is 5 or more, that is why I was surprised my pain mgmt. specialist is so knowledgeable about it, he does some procedures and he said that he cant give me any type of epidural or spine injection for pain due to the Chiari, so I am happy he understands it (too bad he isnt an NS).

But he feels that due to the small area in there, the vertebral artery compression, and high csf that it is all crowded & causing compression, and with my symptoms & neuro exam, it must be that even the small herniation is too much in my case.

My cardiologist has diagnosed me with autonomic dysfunction & hypotension with bradycardia when supine. He said it is due to the problems in spinal cord, signals are not getting through properly to my heart to keep BP/Pulse regular or something like that.

My pain dr. also wants me to have thoracic surgery, my back is getting so bad some discs are basically gone, so he says that area is compressed too, along with worsening scoliosis & kyphosis, he is having trouble finding a local surgeon that does thoracic surgery that invasive.

So I am not sure what is more urgent, my head or my back. Or which problems are causing the worsening pain, neurological issues, numbness, and weakness.

I have to say these severe migraines almost daily are the most unbearable though. And dizzyness is causing me to fall over even when trying to crawl to my wheelchair, so it is a little scary.

I guess since my symptoms are progressing, he wants me to see a NS asap. But maybe I have time to put it off, I dont know if it will continue to worsen or not.

Last week I did email my MRI results & symptoms to an NS that I found online (out of state) he did a free consult by email, I asked him if the findings or symptoms indicate anything urgent, and he replied that I have Chiari and due to my symptoms I need to get to a specialist for that and should not wait, so that scared me. That NS does not do chiari surgery, but he did feel that is causing most problems in my case. So I have been confused and worried.

I will look for a Chiari specialist to send my info. & MRIs to and see what they think. I am in Central WI. I am so limited in traveling, extremely claustrophobic so no planes or elevators, and in wheelchair. So that all limits where I can go.

I feel like I may just have to live with this, but it is getting so unbearable.
Thanks again for your info. & advice, I really appreciate it.

[selmaS]

  Hi....The degenerative disk issue is something we all have ...even those without Chiari it is part of the aging process....however, many of us with Chiari may also have ehlers-danlos which can cause early onset of this condition to a point where it can cause us some issues....

Next, the size of ur herniation is not really an issue or the fact it appeared to grow in size, for many Drs they use the size to determine Chiari and the herniation must be larger then 5mm....since urs are under, u may find it difficult to get a NS to listen.....as to y it may appear to have grown, it may be a different slice they are looking at...an angle....it can grow too, especially if u have excess CSF pushing on it or if u have tethered cord pulling on the tonsils...

U will want a CINE MRI to see if u have a CSF obstrcution...MRI's of ur entire spine to rule out syringomyelia, tethered cord in addition to the disk issues u already know of.

It sounds like u may have POTS in addition....but u do need to rule out all possible related and non related conditions as they can affect how u feel and heal should u go forward with surgery.

In getting to a specialist....there are non profits that will fly u, and charge u only what u can afford or free....

I am not sure what area u live in to suggest where u may try by just mailing in ur info....but many of us do have to travel to get to a Chiari specialist as Drs well informed and experienced are rare, not Chiari ,

NO idea on the lump , but increased pressure from the excess CSF or compression would be y it appears to be more sensitive.

All I can suggest is get ur info to a Chiari specialist.