I finally had my series of MRI scans last week. I will share it here with you
So…it appears that everything is still the same…with the exception of one thing.
The NSs plan of action is to “maybe do a lumbar puncture but” he “remains reluctant to operate“. Here’s the context though and where I start analyzing the case before me.
When I had this scan a few years ago, the results were the same as now…I had a lumbar puncture (LP) afterwards and my pressure was 21. Apparently high but not high enough to cause concern, the surgeon told me “I’ve had patients with pressures of 60“. I wanted to call bullshit because that number just sounded inflated but then again, Hydrocephalus is not a one shoe fits all kind of condition. (I’ve read somewhere that the normal range is between 15 and 20). At the time, I suffered severe headaches, a constant throbbing especially when I bent down/coughed/or sneezed, immediately after the LP for about a week but it passed and I felt awesome. The surprising thing was, I got a call from the Neurosurgeon (NS) 2 days later who seemed hopeful that I would have felt some relief after the LP. If I had, he was going to suggest putting in a shunt. However, I didn’t so he proceeded to refer me to a Neurologist who just wanted to “trial” me on every kind of anti-depressant she could come up with. After a couple of months entertaining this and becoming extremely depressed (because of the drugs), I told her that I was not going to be a guinea pig any longer especially after she told me “We don’t know what’s wrong with you and therefore not too sure what else we can do“.
I have this question lurking in my mind: If the pressure was high but not high enough AND the results from the MRI being what it was/is…then what was it that lead him to the brink of surgery?
I have my own theory as to why I had those headaches. The residents doing the procedure struggled to get the right spot. It was only after 4 attempts, hitting a couple of nerves and some unsavoury yet vocal language from me and crying like a little girl that they finally got what they needed. I’ve had a few LPs ever since I got meningitis at the age of 15, it doesn’t get any easier and I feel a bit traumatized, to say the least after the last one.
I haven’t heard from the NS or my GP (despite seeing him for a consult with my daughter on Friday – he didn’t say a word about my results…and I didn’t ask), as yet. I’ll wait until Wednesday and see if I hear anything from the NS or maybe see if I get a letter for an LP booking before contacting them.
After I got the results letter last week, I felt a bit deflated. Second (maybe more) guessing myself and everything I know I have experienced especially over the last 12 months. I started wondering if I actually felt what I did, maybe I exaggerated, maybe I was just overly stressed at the time and it was something else…etc…etc…etc…I am an analytical person by nature and will scrutinize something to death before I find my peace with it, which is why I’m not going to let go of it all, despite having felt deflated.
When I spoke to a close friend over the weekend after she asked me how it went, I told her about the results and mentioned the last line containing the words “There is mild paranasal sinus mucosal disease…” She said, “Good grief, what else can be wrong with you?” I replied, “Well I say bring it! I have Hydro which is a condition, not a disease and now I have a disease which I have no idea what it is and have never been told before. So I maintain…Whatever! Bring it on“. We laughed about it And, to be very honest with you, I’m so over all of it really. I realized a long time ago, though I do forget, my attitude to any of this needs to be right in order for me to maintain some form of sanity – even if that means laughing about something just to change the way my body responds to its negativity.
As for paranasal sinus mucosal disease…who knows. Is there a link? Is this something new? Have others with Hydrocephalus had this as part of their results? What relevance does it have? Should I be worried about it? All questions I don’t have answers to…
I’m starting to believe this must be hell on earth…I’m convinced. This is why I don’t mind what comes next…