Hey Joe,
Firstly, I do not think there is anything off topic in your question, in fact quite the opposite. Unfortunately, you are not the only person experiencing this ‘All Fixed’ approach. In other words ‘Me Too’.
My first neurosurgery was back in Feb of 1996 and I recovered OK, not great, but OK. I then required a 2nd surgery and was told it would settle, only it didn’t. I was told my continuing pain was everything but related to the surgery. First it was dental, so I had all of my top teeth removed, it was not dental. Then I was told it was optical, so I had my eyes tested and I now wear specs, but the headaches continued. Then I was told it was migraine related and was trialled on all sorts of meds, but none of them worked and the side effects were just nasty. I was then told it was stress related. Past stress, present stress, future stress, no wonder I was stressed with all of these differing diagnosis. It was explained that I was storing these stressors in the muscles in my neck shoulders and face and I was treated with multiple treatments of Botox. Sure, I was wrinkle free but my pain continued.
Then they decided to operate again… …and again… and again. Each was to ‘fix’ an issue and although the scans showed that fix had worked the flow on effects have been never ending.
When it comes to neurosurgery 8months is still fairly early on in your recovery. Sure, the bone and scalp have healed, but the brain itself can take years to recover. My last surgery was back in 2013 and still today I battle. According to the medicos the scans look fine, but ohh, this is far, FAR from fine. Some days I’m tempted to dig my eyes out with a teaspoon as the pain behind them is just beyond measure. Some dr’s have come out with ‘You just have a low tolerance to pain…’ but honestly they have no clue just how bad BAD can be. I’m often saying ‘When you hurt your leg it affects your leg, you may have a limp. 6-8weeks later it’s all healed. But when it’s your brain it can affect EVERYTHING and 6-8weeks later it can still affect EVERYTHING’.
Some patients can go through all of this and be relatively unaffected, but for some the after effects can be life changing The medicos often portray that those ‘relatively unaffected’ as being the norm, but that is not always the case.
My recommendation to you is that you exhaust every avenue open to you. You never know, someone may just have that ‘Key’ that you are hunting for. That treatment you think ‘That’ll never work’ and write off could be your ‘key’, so try them all.
Document your journey, keep copies of EVERYTHING. All of your appointments, all of the drs and their specialisation. If a dr sends you for a scan, get a copy. If the dr writes a report, get a copy. If the dr sends you for a blood test, get a copy. I’ve seen more dr’s, specialist and wizards than I can count on my fingers (and toes) and each one has wanted their own tests and made their own diagnosis. Having it all documented when the say 'Have you tried ‘X’?" you can say ‘yes, and here’s the report’. This can help reduce the instances of doubling up on tests/scans/appointments.
And finally. Acceptance. We all hope wish and pray that there is an answer out there but on the off chance that this is not the case then acceptance of the reality of it all is a must. Pain is a weird beast and head pain can be the weirdest. Some medicos can make out they know all about it. They don’t. Some can get a little frustrated if/when we do not respond to their treatments, but that’s minimal in comparison to our own frustration, none of us are here by choice, but at some point we have to learn to adjust and accept the reality of it all.
Merl from the Modsupport Team
