I had hoped this blog would have been super positive. I thought it would be something to the effect of a surgery date has been set and my skull piece will be returned to my head shortly. Basically I was hoping that I would get the one and only thing I wanted for Christmas this year. Unfortunately, that isn't going to happen.
For a while I thought the surgery would happen in early/mid December. I meet with my neurologist, who is the lead doctor of my three doctors, on Nov. 11 after having a MRI the week before. The short of that visit was he had decided to move to plan B: meaning he was going to keep me on the blood thinner for 6 months but thought it would be ok to temporarily take me off the blood thiner to have the surgery in December. The MRI showed that the swelling of my brain has gone down but the vein where the blood clot was still hasn't opened back up as much as the doctors wanted. Basically - the blood clot was there, but he was willing to talk to my surgeon and by the time Christmas got here, my skull would be back to how it should be.
We all got really encouraged when my surgeon's office called to set up an appointment to talk about my surgery on Wednesday. For the first time, I was excited to go to a doctors appointment and I was really encouraged that this recovery process would finally starting to speed up, meaning I was close to returning to my normal self.
Unfortunately that isn't what happened: instead of surgery coming soon, it's been delayed.
I love my surgeon - we kind of have a love/hate relationship that started when he did a horrible job shaving my hair before the first surgery. He says I shouldn't be too upset as that was emergency surgery and my hair style wasn't as important as them getting in quickly. And he knew what he was going to tell me was going to be disappointing and make me upset - but he said it was in my best interest.
Basically what he said was he does not fill comfortable performing the surgery until my vein opens up more and the clot is gone. Pretty much returning to plan A = 3 months from when I left the hospital. The surgery we're talking about is putting the skull piece they removed back where it belongs - and what's crazy is it's considered an "elective" surgery. My surgeon said some patients never have anything put back in their head, but he said because of my young age and active lifestyle, he suggested I go through with the surgery - but wait.
He is worry about doing the surgery so soon is he doesn't want to go ahead and do the surgery and then the clot gets big again. He said I've gone so far already, he would hate for me to have to basically start all over. He wants to meet with me again in six weeks, after I have another MRI (which they called to tell me the date while I was writing this), and then we'll set a date surgery date for January depending on the MRI.
Physically and medically I value my surgeon's reasoning for delaying the surgeon. He's the one who is ultimately responsible, and it makes medical sense. As my dad said, if we wait until my head is ready for the surgery we go from kicking the field goal to making the touchdown.
But personally and emotionally - I'm disappointed, discouraged, upset, angry and a couple more things that aren't appropriate to write in a blog. Sometimes I feel like I take one step forward and two steps back. None of what happened and continues to happen to me makes any sense.
I have more questions than I do answers - both from my doctors and from God. I replay in my head everything that lead up to the stroke and what I can remember from my time at the hospital.
And while I haven't given up on God - my faith has totally be tested/challenged/questioned more than anything in my life. While I am surrounded by amazing friends and family - part of me feels very alone in all of this. While they all support, encourage and love me, I ultimately have to do this myself. And despite all my prayers, pleads and tears, talking with God is really hard right now. This whole thing just feels like the never ending story or a horrible nightmare I can't wake up from.
Everyone, including my doctors, say one day I'll be back to my normal self, just right now I'm not there yet - and my lack of patience doesn't help. One day I'll get there, but this delay of game is hard to take in right now.
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