Chiari related headaches

[jenniferk86]

I was just wondering... I know that chiari is linked with causing headaches located in the back of the head, but can it also cause headaches located in the sinus and temple area or is that likely from another cause?

[jenniferk86]

Dr. John Oro



We have used nerve blocks for persons with the Chiari malformation that also have occipital neuralgia. We have not seen any problems
with the blocks and, when done appropriately, they should not increase the herniation. Blocks in persons that have already had a
Chiari decompression take special care and the possible risks should be discussed with the specialists performing the blocks. To
date, we have not seen any side effects from the blocks in persons that have already had a decompression.


Looks like safe before dec. Risky after

[jenniferk86]

Hmm...that's weird...dr.oro is one of the well known chiari specialists, it would be pretty disappointing to me to say the least if I found out that the steroids shots could actually cause me more harm! I will have to look into this.

[Samanthab259]

Hi Jennifer we are all told so many different things by our doctors. I was told to never ever get steroid injections due to it can cause more harm to us. Im still a newbie to chiari so i could be wrong. I had one before i seen my new ns it did help my neck alot but i also was sick for about 3 days afterwards. I also have bad headaches & I have been decompressed. Mine seemed worser after surgery. I also have pseduo which may be causin my headaches.

[jenniferk86]

I did it because just because you have chiari, doesn't mean your headaches are cause by it, I was hoping and it's a possibility that the block would help someone who has occipital neuralgia on top of chiari...I prob do not, it's worth a try, it's not that painful and doesn't take very long.

[cash242]

I am sorry that must be so frustrating! I wonder if an occipital block has every helped anyone with chiari?  I was going to try that next I had another chiari person tell me that botox helped them and thought and aged as this disease is making me that might not be bad!! Best of luck!

[jenniferk86]

Um.... The occipital block is not working at all... I have noticed no change except the three tiny sore spots when I lay my head down on my pillow at night from where the needles were put in.

[cash242]

I have the exact headache and I have had the surgery.  It was gone until a month ago and it worse every week.  My head feels so heavy I don't have the full frontal headache since the surgery.  Before the surgery my scalp was so sensitive and that was gone until today. I think it is so hard to explain--how is your occipital block working?

[selmaS]

Not at all...it is just getting to the right Drs, not all r well informed or experienced with chiari so they look for text book symptoms and when u say something out side of that they r perplexed.

  U can  not change how u feel, or describe it, it is just many expect to hear us say it one way and one way only.....

[jenniferk86]

Yes, I do say it usually starts in the base of my skull and neck and goes behind my eyes then kind of radiates outwards, but it's kind of hard to explain...it's like pressure from the inside but pressure from the outside at the same time...that's usually exactly how i explain it... Is that a bad way to say it?

[selmaS]

  Well, Drs look for u to say the base of ur skull and the neck area...if this is true and then it wraps around ur head, then that is how u should describe it...

Tell them how it started...not how it is now, and then tell them how it progressed....to just say it hurts all over will stump the stumped already and not help u get closer to relief.

If ur HA's were never in the back of ur head, then also let them know that too, not everyone will suffer from chiari HA's...or the typical chiari HA....but, too many Drs go by the book, not by what is in front of them.

  Hope u feel better : )

  "selma"

[jenniferk86]

My whole head just hurts all the time and my ears feel like they are going to explode and the doctors always ask me where my headaches start and how they feel and all I can tell them is it's hard to explain cause it hurts all over.

[jenniferk86]

My whole head just hurts all the time and my ears feel like they are going to explode and the doctors always ask me where my headaches start and how they feel and all I can tell them is it's hard to explain cause it hurts all over.

[selmaS]

  Yes indeed...chiari can affect our sinuses.....I used to get a feeling like a vise or a strap was wrapped around my head....I got the temple HA's often.

I will say have not had either since my surgery...I do still get chiari HA's, but the sinus ones have not returned.....I even had PND that is gone and I pray stays away as it contributes to my reflux and that is under control right now too.

  "selma"