I've been diagnosed since about 2006 but it's been there for at least 10 years. It's a chiari 1 malformation. Not sure how long but docs said it's very pronounced. I've never spoken to anyone else with this before. I'm going through a bit of a crisis. I have multiple serious health issues. But this has been thrown back to the front lately. Normally I'm at about a 2 maybe a 3 out of 10 in pain. But they are chiari headaches come and go. For the past month or so the pain has been at a 10. I'm in misery and have no idea what to do or what to take, try etc. I have an appt with the neurosurgeon on April 11th but I'm not even sure if I can have the surgery because I have pulmonary hypertension (rare and very serious).
So my question is, does this seem like Chiari issues? Do you have times when you feel better and worse?
I cannot add to what Emmaline wrote to you...very solid, wise input in my opinion...I do want to share with you my experience though..I had pulmonary issues before surgery...after surgery they went completely away! No one could really explain this to me..why I never had respitory infections again..I would get sick with pnmoneua /bronchitis at least 3-4x per yr..not once on 4.5 yrs since my surgery have I had an issue..UNTIL NOW..but , honestly, I think I just got sick and got an infection from being worn out..Nothing like it use to be.,
As far as your appt goes..I would make sure to take someone with you..always good to have another set of ears! Bring a detailed list of ALL your symptoms...even if you don't think they are related..
There is a wonderful book I would suggest you read..CONTENTS UNDER PRESSURE by Ray D'Alonzo.....he tells of his journey.