Hi, everybody,
It seems that the "scar neuroma" diagnosis explains only one out of three types of headaches that I ended up with after my AN surgery. I would like to elaborate on all of them since we now have an entire section devoted to headaches.
Let me start by saying that before my AN surgery in 1988 I was COMPLETELY HEADACHE FREE. My tumor was on the right side, 6x3x3 cm in size and removed by suboccipital approach with muscle flap insertion. The incison is huge, it goes all the way form the top of the head well down into the neck. My headaches lasted 10 years with progressively longer breaks between them. I am now headache free for 8 years, however, I am facing another surgery for recurrence and very afraid that no matter what approach I will choose, the headaches will return. The time of headaches disappearing coincided with the new tumor growth. Go figure!
Headache type #1 for me would be most consistent with the "scar neuroma" diagnosis. They did not start right away as initially the incison was numb for a few months. Then, as the numbness started going away, the pain started. It felt as if at the incision site I had a snake attached to my head which twisted and turned, bit me, grabbed my hair, sent shooting pains all over as well as turned alternately very cold or very hot. This is not the most severe headache I experienced but nevertheless was very unpleasant, distracting and tiring. It wore me out. Aspirin, Indocin or acupuncture all helped. This headache is mostly on the "outside" of the head.
Headache # 2 is a pure vascular headache with throbbing, pulsating sensations, sensitivity to light and sounds, nausea and vomiting. It ran in clusters of a few days to a few months, therefore, I was diagnosed with "cluster headaches". Indocin suppositories ( because I could not hold anything down) were somewhat effective. Acupuncture somehow ended the cluster. Moreover, it made me more focused and less spaced out. I tried some other prescription medications ( I am not sure of their names) but they either made me throw up a lot more or sleep like a baby all day long. You can't show up for work like that! This type of headache felt like it was deep inside of the head on the operated side.
Headache # 3 is related to my muscle flap. Basically, a portion of my trap muscle was harvested ( i love that terminology) and inserted into the opening that was not covered by the metal plate. It adhered to the dura and created exertional headaches and by "exertion" I mean any form of physical exercise. This proved amenable to stretching, massage and progressively increased exercise (!) as a prevention. If I wanted to stop from hurting, I had to stabilize my neck and stop it from turning. I had a desk job, so that is what I did. This type of the headache also interestingly enough felt "inside" the head.
For the first 3 years the entire cranial defect area was very raw and tender and I could not sleep on it, otherwise I would wake up with headaches. There were definetely trigger points there, so I slept at a 45 degree angle. If I was into my cluster, I sometimes slept in a chair to avoid the area touching anything. Headaches # 2 and 3 seemed to trigger each other, the first type was independent of the other two. The most awful days were when I had all three types of the headaches at once. That's when I was in bed all day screaming. Another thing that triggered headaches was sleeping more than 7.5 hours per night. Once I figured that out, I got up with an alarm clock even on weekends.
Sorry this is so long but I wanted to be specific because headaches can be very different.
Eve
