Hey Matt,
And that is completely understandable.
I think it depends on who is making the definition and what measure they use to define ‘success’. For example, I had a craniotomy and post surgery I was told ‘All Fixed’, I queried this as the flow on effects were nasty. ‘No, no. We operated. We fixed…’ and it was true, they had operated and had dealt with an issue. But in doing so they had unleashed a plethora of side effects, but the surgery itself was deemed a success. As you state anything under a Rankin of 2 is still considered a success, but the range between 2 and 3 can be HUGE, so even at 2.9 it’s still considered a success?
Approximately, 3mths post craniotomy I was back on the operating table requiring further neurosurgery because it wasn’t ‘All fixed’ at all, they had merely used their own measure to quantify their success and had not taken my reported symptoms into consideration in that measure. The response I received when querying this was ‘Well, the scans look good…’ and sure, they did, but the physical side of things was far from good. I could still walk/talk, so all was fine (according to them).
There are a few differing measures used from Rankin to the Glasgow scale to the ‘modified’ Rankin (of which it seems there are 3-4 versions) BUT, and that is a BIG BUT, they are all very subjective and depending on who is actually making the assessment, the interpretation can vary significantly. Some measures concentrate on mobility issues as an indicator, but mobility is but one function. Initially, post surgery, my mobility was an issue and over time this has improved significantly. But some of my other symptoms have not improved and the headaches have become a constant, it’s the intensity that varies. Can I function? Yes. Can I walk? Yes. Are the headaches debilitating? YES. But that doesn’t show on the scales.
These scales do have a use and they can be of benefit to the dr’s. But basing your recovery on such a scale does not take everything you may need to manage, in your recovery, into consideration.
Now, I also want to say here, I am yet to hear of two neuro patients, going through all of this, having the exact same outcome. Some people can come out the other side relatively unaffected, some can have lingering symptoms and some can have life altering outcomes. It seems the deeper within the brain, the greater the impacts and the more difficult the recovery, but there can be many variables to that including exact location, surrounding structures, ease of access etc, all of which can have an impact.
My advice for your recovery:
Take it slowly, slowly. Do Not go pushing your limits. This is a time to be kind to yourself. The slower you take your recovery the better your outcome.
Listen to your body. When your body says “STOP”, you stop. Your body will give you signs, but you need to recognise those signs.
Medicate. If you need them, then use them. Some of us males take what I call the caveman mentality. ie ‘I man. I strong. I can beat this…’ and don’t use the medications. You are only disadvantaging yourself.
I say all of this because I did the exact opposite. I pushed my limits to recover quicker, convinced myself I was building stamina. My body was screaming at me to stop. I didn’t listen. Something went ‘POP’ and I ended up back on the operating table. Ahhh, don’t be doing that.
I must also agree with @JFrancisco in regard to statistics, I’m not sure. Personally, I don’t hold much faith in statistics. If you survey the right group of people statistics can say anything you want.
This ain’t an easy journey, we know that because we’ve been there too. Just roll with the punches.
I wish you the very best of luck in your surgery and recovery and please remember, we are here if/when you need.
Merl from the Modsupport Team.
