When I stepped into that ring again yesterday, I was “prepared” for the outcome I got…or was I?
Funny thing about it, with the softest blow, I feel like I’ve been beaten to a pulp. That’s how little it took. For me to know the possible outcome, thinking I could handle it, to the emotional wreck I see in the mirror this morning. As my husband said before he left, giving me a hug, “You look like you need TLC from all directions, and more, today…”
In a nutshell, I have been referred to a Neurologist: “They do Botox shots here now you know and that ETV jet looks normal. It looks really good…” No further explanation or trying to figure out what caused my visual disturbances or the extreme dizziness in July and August this year. Even the right-sided pain and numbness has been dismissed with a slight turn of the head and slow nod. A look I’ve seen so many times before, which I interpret as, “If I nod my head yes for long enough, she’ll think I’m actually listening when I don’t have a clue as to what to tell her next”. Our consult ended with “You’re a complex case…as you know”. I was told that my consult would be with her when I got my letter and call from her room, but instead, I ended up seeing a 2nd registrar after I told the 1st one I was there to see Dr L. She just came in afterward and gave her opinion without listening to my new symptoms. Why have me come all this way if you’re not even going to have a proper consult with me..?
I think I may have put too much hope in Dr L…
Leaving the hospital, walking in the rain back to my car, I couldn’t control the outpour. How is this happening again?!
I had my pity party yesterday, unable to stop the tears, I licked my wounds and was left swaying in the wind – trying to figure out my next move or better still, decide if I have any fight left in me. I felt like such a hypocrite because I always tell people to never give up on themselves and yet, here I am.
My saving grace and voice of reason came in the form of Cindy. I saw her message while in the waiting room, wishing me luck for my appointment. The first person I texted back after and, thankfully she’s been walking alongside me ever since. A voice of reason in a troubling time, steering me in the direction of what my next move could possibly be. I’m so thankful!
My MRIs have always shown flow through the ETV stoma. Something, no surgeon would disregard and despite you being symptomatic, their first response is: “To do no harm”, words Dr L used at the start of our conversation yesterday. These words speak volumes to me, and I immediately know what they mean once uttered.
But, with the help of Cindy, I now understand that asking for brain surgery – is not the way to go. Her suggestion of asking for a Lumbar Puncture, when I’m next symptomatic being a standing order, sounds like the sensible thing to do. This way, we’ll know what the pressure is, and they have a clear indication of a problem they need to address sooner rather than later. In hindsight, MRIs with flow study, despite being the best scan to do with an ETV, will not show up web-like scarring, as an example. It makes complete sense that the only way to know if the pressure is high would be by the increase in size of your ventricles (something not always apparent, especially if you have slit ventricles) or by doing an LP.
In 2013, I had one done and my reading was 21. Normal pressure is between 5 and 15. According to the surgeon at the time, it was “High but not high enough as some of my patients have readings of 60 and upwards”.
My normal is not your normal and to be honest, I don’t know what my “abnormal” is either because I’ve only once bothered to find out what my LP pressure is. It boggles my mind and would seem such a sensible thing, though it’s not too late…
So, going from an emotional wreck with no clear direction, to someone with a plan (sort of). I guess I’ll just have to wait it out until I’m symptomatic again, hoping and praying that I get through it, so I can get my pressure reading and take it from there.
As for Dr L…
I know I have to feel comfortable with the person who is going to “mess with my head“, as I’ve said before here. Honestly, I’m on the fence in this regard. Part of my thought process yesterday was, L is not the last letter in the alphabet so, I either stop there and give up trying OR, I move on to the next letter. I told my husband, “You know how people tend to say to someone who has Cancer, keep fighting, don’t give up. Well, I kind of feel like that. You keep asking me why I keep going back when the doctors don’t do anything – it’s because of you and the kids. But I don’t think I can do this anymore. I’m tired of fighting, I’m tired of this condition and I’m tired of the same outcome”. I didn’t want to tell him any of it for fear of hearing “I told you so…” but I had an IDGAF moment through the tears and opened myself up. He was quiet and didn’t respond but held me close…That was good enough.
Bottom line is, I’m tired!
So, what do you do when you’re tired? You rest, take time to replenish your energy and you carry on. That’s what I’m going to do.
Since Skyewaters is all about being “honest, no bullshit or fluff and telling it like it is”, I’ll say this much: To anyone who feels disappointed in my reaction or feels like I’m a sad case – Go ahead. I don’t have all the answers, I don’t know the magic formula and I sure as hell can’t make it all better. Many have thanked me for my blogs and expressed their gratitude of feeling validated – believe me, it’s a two-way street. To the people who provide me with reciprocal inspiration and motivation, I thank you from the bottom of my heart.
What I do know for sure is, I’m the strongest person I know and for now, I’m going to try and be kind to myself. You can rest assured I’ll continue sharing my journey (despite wanting to shut down this site yesterday) until I have no words left in me.
So, stick around and keep on reading or don’t, the choice is yours.