Yes, we have many factors that will affect overall wellbeing. We do not live in a petri dish so its easier for physicians to attribute our issues like fatigue, headaches etc to others things. I feel my doctors have less wiggle room to attribute my head pain to too many other issues besides the craniotomy since the problem came along when I was having a series of craniotomies. I'd had four craniotomies within 7 months!
Mary, if you are getting heavy periods and are now anemic, has your PCP or Gyn done an untrasound to check for things like fibroids?
Phyl, I'd traveled (400 miles) to have my initial craniotomy. I ran into serious life threatening complications post surgery. I did not have support locally like I should have. Its not that I didn't have a PCP or a neurologist and ENT locally, but no one rose to the occasion and as a result my complications were compounded. It was a nightmare.
Some things I'm currently benefiting from:
1) Last year I changed PCP. He runs a consierge practice. Its like a membership. I pay a fee once per year. His practice is limited to 350 patients rather then the normal approx primary care doctor/patient ratio of 1500 patients per doctor. He can spend more time with me when I see him. If I need to talk with him he's very accessable in a number of ways. He can take the time to help me research my condition. I can go on and on but I know if I got into serious trouble as I did, at least I know I'm not going to feel abandoned by my local doctors. My insurance plan is thinner then I'd like it to be. Frankly, its saving me resources ($) to pay this doctors fee then to increase the insurance coverage and help a big corporations bottomline.
2) I've worked hard to educate myself about my own anatomy and condition. I'm asking very specific questions that force everyone I'm dealing with to not dismiss me and simply tell me to go to a pain clinic or headache specialist. For me the occipital nerve block is not the answer as I did not have surgery in that region. The issue may or may not be related to scar tissue but I'm still asking for the surgeons to try to tease that issue out.
3) Hard for my NS to tease the answer out regarding the dura/muscle/scarring of the temporalis muscle. In order to determine if this is the problem prior to surgery they would need to inject numbing meds into the dura etc. If they tried this, it would numb up the brain too and knock me out. If I were knocked out I'd not be able to say if its working on the pain! So the only experiment is simply to go forward with the surgery. Its possible I will not benefit from adding the plate and untangling the muscle if in fact its tangled in the scarring and dura etc.
Once again check out the definition of "chronic post craniotomy headache." Specifially ask your doctor if he thinks this is what is causing your pain. Most become confused when you ask this. IMHO they seem to have this misnomer that in order to be classified as having a chronic post craniotomy headache you have to have the issue whereby the dura is attached to the
occipital muscle. But in reality there are other reasons to classify CPCH. Its just that this occipital thing is the one that is easier to determine and there is a lot of documentation and studies regarding treatment. Plus normally they use titanium plates which helps prevent the headaches from being an issue as often as it used to. If you have a headache problem they will automatically assume (I'm assuming this) that its not something they can help you with and you need to see a pain person not them.
Anyway, if the doctor/surgeon says he does not know if you have CPCH, ask if you have enhancement (most current brain MRI) in the area where your surgery was. On MRI this is a brightness or defuse whiteness. You see for me I had a lot of enhancement when I had the epidural abscess four years ago. Now on the MRI last month the white area is much smaller, but still I get enhancement. This enhancement is like a reaction to the tissue in this specific area when they inject the dye. This lead my NS to have his assitant call me back and report my MRI was perfect, nothing was wrong and if I continue to get headaches I should see a headache specialist or go to a PC-- all of which I've been doing. Of course what he really meant was I do not have something acute going on that needs to be operated on emergently. If I hadn't known this I might have let it go as most here are saying happens to them ...or I'd have gotten even more frustrated. Insteed because he couldn't dismiss me so easily and I was being reasonable, respectful and rational, his assitant set up an appointment with the NS to talk with me directly. I'd also asked the assistant what he meant by normal..."normal as in normal or "normal" as in its not something NS could see something to operate on. And then I started asking about the enhancement on the imaging, stuff I knew his assistant couldn't answer.
At any rate, if you are getting enhancement (see radiology report) ask what its from. My doctor (NS) said it was likely scarring. This is when I asked if the scarring might be stuck to the dura causing pain.
I hope this helps.
Check headache classifications here on p.62. CPCH are the last type described here.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
