Hey Manda,
“I have an mri scheduled in a couple of weeks. Would this show anything or should I specifically request a CT scan as well?”
An MRI is a more defined type of scan, more precise than CT and would show a cyst.
“After an episode, I also experience increased pressure in my head. Does this sound at all similar to a cyst or does it sound more like adhesion? Or something else?”
This really is something only a trained medical professional can answer and I certainly ain’t a Dr.
Now, in saying that, in my experience, fluctuating symptoms are my ‘new normal’. Head pressure? that’s normal for me. Chronic BAD headaches, those a normal too. Some symptoms are manageable, but some are FAR from manageable and I simply never know what today will bring. I too have had the dr’s tell me ‘the cause of your continuing pain is nothing we have done… …It must just be YOU’ like I choose to be in agony or my ‘favourite’ line said to me by a nurse ‘Ohhh, it can’t be THAT bad…’ and the frustration with it all, be that symptoms, be that dr’s or be that with self is HUGE. This all adds to my stress and the medicos are ultra fast to label it all as ‘stress related’. GGGggrrrrrrr. No wonder I’m stressed… …I have to deal with dr’s.
That lump that’s perpetually sore, is that the ‘shunt valve’ you are talking about?
A shunt is made up of 3 parts The brain catheter (or The Ventricular catheter), the valve and the distal catheter (or Peritoneal catheter). This valve does a couple of things. 1)It regulates the cerebral spinal fluid (CSF) pressure in the skull and 2) prevents fluid flowing back from the peritoneal into the skull. The valve is rather spongy bulb and can be pressed on or ‘depressed’. Then as the valve reservoir refills the bulb returns to its normal inflated size. The scalp skin over the valve can be rather sensitive too. Normally that skin sits smooth with the skull and now it has a foreign object (the valve) underneath it and this certainly can feel like a bruise, but eventually, it does settle. The ‘lump’ is still there, it’s just sensitive rather than sore. It just takes time to settle.
The healing of the scalp (or the skin) often heals OK, but the skin is on the outside and is not a good indicator of what’s going on inside.
As for the wound sensitivity, that is normal. It took around 9months for that sensitivity to ‘normalise’ with me. I say ‘normalise’ but I think I just became more accustomed to it. In really basic terms, they cut my scalp, cutting the nerves, then they stapled it all back together but in doing so those exposed nerves are right on the scalp surface and are EXTRA sensitive, like WOW sensitive.
Now, speaking of ‘sensitivity’… Once you have been down this neurosurgical route you become SUPER aware, SUPER sensitive. Every twinge, every ache and we’re asking ourselves ‘Is something wrong?’ and I can tell you, that’s normal. My wife became extra alert, she would watch me like a hawk and she could read all of my body language. As much as I tried to convince her all was OK, she could see, something was wrong. Even years later she can still read me better than I know myself. “I’m okay, I’m okay…” “No you’re not, look at your eyes…” And she’s right, my eyes are a giveaway.
What I now look for is a progression of symptoms. A headache, that’s normal. My right eye closes up, that’s a bad headache. Then my face droops, that’s a bad sign, then my whole right side gets a severe case of pins’n’needles, Painful pins’n’needles. It’s then time for me to act.
Now, these are my signs something is wrong and you too will learn your signs. Your signs maybe totally different, but if you ever see a progression of symptoms. Act.
Look, I’ve lost count of how many times I’ve gone to A&E, for them to do their scans only to send me home. But by the same accord, I’ve ignored symptoms, ignored symptoms and ignored symptoms only for the neurosurgeon to rip into me for not following through as there was a genuine issue. In my humble opinion, if you think it’s necessary, then act.
Merl from the Modsupport Team
