I apologize in advance for the long post.
I learned that I had a Chiari Malformation Type I about 19 years ago when I was 10 at the time. It did not give me any trouble then but I was having really bad migraines at the time and for several years after. The doctor said I should grow out of it once I hit puberty and mature and my body grows and it should create space. Several years later my migraines seemed to slow down and eventually go away for the most part but no other trouble.
Fast forward 18 years. About 7 months ago I stood up from the bed after laying down and watching tv and had the absolute worst pain at the base of my skull. It lasted about 10 - 20 minutes and then went away completely. A few weeks later I started having headaches at the base of my skull. No sharp pain just dull constant pain, almost like someone was trying to constantly drive a spoon into the back of my head. I started to notice other changes as well. I lost my train of thought easily. I started having issues with my balance. Often I would feel like I was just spaced out. I would get very tired after going up the steps in my house.
Something in the back of my head (no pun intended) made me think about the Chiari again. I started researching symptoms and quite a few things lined up. Other things that I would have never guessed would have been related were listed as possible symptoms. The doctor that I have been going to said that I had a CSF leak with low pressure headaches and performed a blood patch. I felt better for about a month or a month and a half and then it came back again and seemed worse this time. I had another patch, this time with fibrin glue a little over a month ago. Now I am taking a ton of Diamox and seem to be having more trouble with high pressure headaches than I did with the low pressure.
I feel like I am caught in between here. The MRI showed that one tonsil is at 9mm and the other is 4mm. The doctor also noted from the MRI several months ago that I was showing brain sagging but wanted to take care of the CSF leak first and then worry about the other after. Something keeps drawing me back to the Chiari. Is it possible for the Chiari to cause the leaks? When I mentioned certain symptoms she said that was common with the csf pressure being too low or too high.
For symptoms I have had headaches particularly at the base of the skull, pressure behind my eyes, dizziness, soreness in my neck, back pain, sore ankles and knees especially when climbing stairs, balance issues, constant fatigue, ringing in my ears, sleep apnea, poor circulation, constant sinus issues, brain fog, lose my train of thought even in the middle of speaking, excessive thirst, feeling of a lump in my throat when I swallow, swollen lymph nodes on the sides and back of my neck.
I know some of these may not be related symptoms but I guess I was also wondering if they could be. The last one is mood swings. I have noticed I have had a dramatic change in my mood lately. I seem to get angry very quickly at about anything. I know it could be just from stress but wondered if it could have any significance with the Chiari.
Again I apologize for the novel and welcome any help that can be provided.