Hey @Jdelong ,
Welcome to Ben’s Friends.
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends.
When you say “…then I started taking medicine. Since I’m trying to get on diffeeent medicine to manage the issues”. Which medicine are you taking? What are the issues you’re needing a different medicine for?
I have a little nasty growing in my head which has caused me a plethora of side effects, including hydrocephalus (water on the brain) as the growth has closed off the aqueduct and is putting pressure on surrounding brain structures. Some medicos are often of the opinion that if the herniation is less than a certain size, your symptoms will be minimal, but that is not always the case. Some people can have a minimal tonsil but have no end of symptoms, others can have a major herniation but minimal symptoms. We are all individual and how our body’s manage/adjust to our symptoms can be very individual. I’d had weird and wonderful symptoms for near on 2 decades before a confirmed diagnosis was made. Prior it was a case of ‘Well, we can’t find anything… …It must just be YOU’. Then one day I’m driving down the road and the lights went out. I couldn’t see. I pulled over I called my wife, she took me to my pcp. I was sent for a scan and my neurosurgical journey began.
The initial neurologist I saw recommended a ‘Wait’n’watch’ approach. ‘Ohh, but don’t worry about it…’ DON’T WORRY ??? You’ve got to be joking. I was a ball of stress before the appointment, then a Dr says, “Don’t worry” OMG. My stress level multiplied in a millisecond. As I say I’d had symptoms for years and they were only getting worse. So, the idea of waiting was ??? Waiting for what???. For things to get even more worse??? That was not an option for me. I wanted a 2nd opinion and made a appointment to see a neurosurgeon. His recommendation was ‘Operate. Get it out.’ which was exactly what I wanted, only that wasn’t how it all worked out.
When they opened my skull, they found the growth was too close to brain structures I need to survive to be completely removed safely. So, the medicos reduced the size of the mass but could not remove it. The operation had altered the route and flow of brain fluid, and I ended up with hydrocephalus and 3months later I was back having a VP shunt placed in my brain to regulate the fluid pressures.
After the surgery I was told ‘All fixed’ only it wasn’t and over the years I’ve required 6 neurosurgeries to try and manage it all and still today I’m on a daily seesaw of fluctuating symptoms/side effects. As I’ve said to others “Some days I can leap a tall building in a single bound (OK, so a bit of an exaggeration) But then some days I’m lucky to even crawl out of bed.” I just never know what today may throw at me.
Me, personally, I think the medicos common line “Ohh, it can’t be that bad…” is an assessment only you can make, not them. They may examine you, they may have the scans and reports, but they cannot feel exactly what you feel. That is an assessment for you alone.
Hope it helps and please do let us know how it all goes.
Merl from the Modsupport Team