Drop the Mouse…Step Away From the Forum…


Put on a party hat…blow a horn…throw some confetti…pop the champagne…join me for my Anniversary celebration…
Well…honestly…put on your tennis shoes…drink some coffee…eat a bowl of oatmeal…and let’s go to the gym…that’s how I’m really planning to celebrate the one year anniversary of my…Posterior Fossa Decompression…AKA…Craniotomy…AKA…Brain Surgery
When the Neurosurgeon first confirmed the diagnosis of Chiari I Malformation…I needed more information…you know what I did…geez…I’m so predictable…I Googled…
And…while I got some professional medical sites with some useful information…for the most part…especially when I was looking for what to expect afterwards…I found links to forums…
And…against my inner wisdom…AKA…Bertha screaming like a banshee…DON’T GO
I went…
The posts literally scared the bejesus out of me…I didn’t stay long…at least not pre-op…I knew I couldn’t read these terrible things…and go through with the surgery…I just couldn’t…
After surgery…it was a different story…I had strange things going on…were they a complication…were the normal…were they related…I Googled…
Yup…more forum links…less professional medical sites…
I went…I needed to know…what I found was a delightfully supportive group of people…who were having the absolute worst case scenarios that you could imagine…
Simple little things like my runny nose…elicited stories of botched surgeries…and leaking spinal fluid…I went back to see the Neurosurgeon…he reassured me…I had a runny nose…probably caused by the same allergies that had made my nose run for 40 years…my spinal fluid wasn’t leaking…
I developed a strange earache…yup…more leaking spinal fluid…and botched surgery stories…I went to my medical doctor…earwax buildup…
My face started hurting…I was nauseated…I had a fever…un huh…same stories…I went to the dentist…abscessed tooth…(it had been precarious for a few years)…tooth extraction…no spinal fluid leaking…
Might I mention that spinal fluid leakage was my biggest fear following the surgery…
Headaches resulted in unlimited accounts of complications…back to the Neurosurgeon…development of a small pseudomeningocele…(tiny leakage of fluid contained in the skin)…fairly common…reassured…I was doing fine…
I don’t even remember the next thing that sent me back to the Neurosurgeon…for more reassurance…and finally I said…look…I’m scared to death here…I know I’m a nurse…I know I should know this stuff…but…it don’t…I need to know…am I going to live a normal life from this point or not…
He gave me a puzzled look…didn’t I know…I was doing awesome…I didn’t have all the comorbid conditions that those people in the forums have…I was young…I gave him a puzzled look…he reassured me I was…he reassured me that he would be there to answer any questions that I might have…
Basically…he reassured me…I was essentially going to be okay…
I left the forums…not that I’d ever…joined…I just sneaked around and read what they said…and left…I realized that the people who had good results from their surgeries…weren’t spending time posting in forums…they were living…finding other ways to spend their days…I wanted to be one of them…
I’d love to say that I haven’t been back to the Neurosurgeon for strange symptoms…but I have…and thankfully…each time I have been reassured…and sent home feeling better…with…no leaking spinal fluid…
Jane

6 thoughts on “Drop the Mouse…Step Away From the Forum…

  1. Jane… I'm not sure what to say here… seeing as, I knew you'd make it through just fine, and all… but it's hard when it's US in a particular situation. It's hard to SEE that everything is fine, or is going to be fine.

    You've got a lot of living to do lady – get out there and do it!! :)

  2. Jane, you really are one of the very lucky ones considering the type surgery you went through.
    Well, maybe luck isn't the right term…many , many things play into why a surgery goes awry.

    And as with most things we play a pivotal role in the outcome.

    And yes, you are young, and healthy, and normal…and educated in your field…makes one even more aware of what can happen.

    Sooo glad your having a great anniversary celebration.

    EatWell-BeWell~:)

    Bea Rigsby-Kunz

  3. Facing two brain surgeries in the next month, your post gave me encouragement…and the willpower to stay away from forums and Google! When I started researching aneurysms and craniotomy, I was petrified!!! I imagined spending the rest of my life a drooling snow pea and someone having to constantly prop me up! Last week when I received the good news that both can be repaired through coiling, which only involves an angiogram,I was relieved, yet still scared. Normal to say the least. I'm sure I'll be a little more panicky Jan. 24th – the night before the first surgery, but until then, I've decided to say, "Screw it!" Pardon my French. I have more important things to do from now until then, like make sure my house, farm, herd and dogs are taken care of and that my ducks are at least in the pond if not in a row. The next 9 days will be spent productively instead of worrying. I'll save that for the 24th. Thanks for easing my mind!!!!

  4. Thank you, Bea…I am lucky…and all those other things…and I'm glad I'm having an anniversary…and many more to come…

  5. Jenn…it is so much more difficult when it is US…all medical intelligence goes out the window…just happy now…that although things aren't perfect…I'm doing just fine…

  6. Arlene…I thought about you when I wrote this…I wish there was more truly 'useful' information on the web…I understand why there isn't…

    I love your attitude…the week before my surgery was spent home in the snow…which turned out to be a good thing…I think it gave me the time to reflect…and do inner preparations…

    Prayers that your procedures and recovery will go well…and that all your ducks will be floating…

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