Avatar universal

Hello and questions about Chiari 1 after accident...

Shortly after an really bad accident with a head injury, I had an MRI to rule out a tumor or stroke because I kept have episodes of really unusual visual problems.  The MRI showed a 5 mm cerebellar tonsillar herniation and I was told by a neurologist that it would never be a problem and to pretend I'd never seen the radiology report.  

It's kind of a long story, so I will give the bullet points:

About the time the intermittent blindness started, I began having excruciating headaches in the back of my skull (before the accident, I had never had headaches, no migraines, nothing).  Upon advice of the ER doc, I saw a headache specialist who dxd me with post-concussive migraines.  I know people with migraines and my symptoms did not line up with theirs.  I saw a pain specialist who dxd me with occipital and sub-occipital neuralgia.  He gave me steroid shots in the skull which last about a week and decrease my skull pain by about 70% (which I'll gladly take), but he says that I shouldn't need any more and if I'm still in pain, it's stress-related.  He also mentioned that my reflexes were all "brisk" which had to do with the Chiari, but that I wasn't "sick enough" for my pain to be associated with the herniation--despite the fact that the skull pain is absolutely immobilizing.

I guess my questions are: does anyone else with a Chiari have occipital pain?  Are they related?  How do you treat the occipital pain when you can't keep getting shots (I was told there is a risk of hematoma if you get too many)?  It's just tough to sort out because everything wrong from the accident is all confined to a very small space (I had a concussion, Chiari, occipital problem, c4/5 herniation--so many problems for a tiny bit of head space!).  One more note: in the MRI that detected my herniated disc, there was no syrinx (sp?) if that helps. I also don't have any other genetic issues in myself or my family.

I'd appreciate any input here.  Thank you!

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4816750 tn?1368804670
Hello jennybee,

As Selma said optical pain is Chiari related.  The headaches can be caused by Chiari but also with the Heniated disc.  With the C4/5 both my be putting enough prerssure.  But make sure the doctor is looking at it also.
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Avatar universal
Thank you for writing--

As far as the MRIs, they did my whole back to see what was causing my inner groin numbness (which, still, no one knows...) and some other post-accident issues.  Nothing weird except a slight post-traumatic scoliosis (which wasn't present before the accident)--another oddity!

If I'm not supposed to keep getting steroid shots, what is the next step in treating the occipital pain?  And is it just something that sort of goes along with a CM or is it directly caused by it?

I have not had a CSF flow test--no one has mentioned it.  But I would not even consider investigating surgery until I am out a few years from my accident as I've read many stories about traumatic CM resolving without intervention. I feel like once everything settles down back there, things will crawl back into place :)  I just have to figure out how to get them settled down!
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620923 tn?1452915648

Hi  and welcome to the Chiari forum.

Yes, occipital pain is common with Chiari.

Steroid use for pain ...or actually reduce swelling is not good no matter where on the body it is used,,..it is a temp relief to see how the pain and  inflammation responds so they can get a better idea what is going on.

As for a syrinx, did they  do an MRI of ur thoracic and lumbar spine as well as ur brain and cervical spine? Did u have a CINE MRI to check CSF flow?

It is possible to have other conditions and not be aware of them...there r conditions related to Chiari and some we r just prone to ....some auto immune conditions and connective tissue disorders.....

WHat u need now is a true Chiari specialist to help u figure out how to best treat all ur issues...sometimes we need surgery and it may but not always help some of the symptoms we have like the occipital pain.....there is no way  to know for sure....but surgery is done to slow progression and restore CSF flow...so it is good to find out if there is an issue.

And testing for ALL related conditions as they can affect how u feel and heal should u have surgery.
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