So, all around GREAT NEWS at my post-up visit last Wednesday!!!
The surgeon told us he won't need to see me again for 9-12 months. We asked about weaning off the seizure medication and he said I could start that same day. So far, so good. I should be completely off of it by the end of March. I did mention the memory issues again and they performed some sort of test for a baseline and said it came back good but with room for improvement.
I also want to share an epiphany I had today! My #oneword2019 is Embrace. I assumed it would be a huge challenge. As I was sharing an update with a co-worker I realized that I've pretty much accepted that today's "me" is the new me and any progress with lost memories, thought processing, and focus will just be a bonus. I want to move forward and not be a sitting duck waiting for "me" to come back. But, it was the first time that I realized that I've embraced the changes in my life, my family's life, and moving forward is the only thing I can do. That realization really excited me! I'm excited for all of the "bonus" things that come back to me going forward.
I will probably not write as much since my updates will be fewer and farther between, but THANK YOU ALL that have prayed for me and my family, helped with anything we needed, and continue to be a source of hope for us going forward. This has definitely been a challenging experience but has also resulted in our faith being expanded beyond what we could have ever expected.
Friday, March 15, 2019
Wednesday, March 6, 2019
Procedure #2
Apologizing ahead of time. I've had this written up but forgot to post it.
After some miscommunication between the surgeon and the office staff they were finally able to schedule my procedure. I had the pre-op call mid last week. I was scheduled to check in at 6:30 am on Monday, February 11th with a procedure start time of 8:30 am.
About 11:30 am my husband was able to get an update from the doctor. It is truly a miracle! How BIG is our God?! They went in and there was nothing else to fix!!! The procedure on Christmas Eve they told us it was at most 70% complete. The Dr is amazed! He said this is so rare, he's never seen it happen to one of his patients. Prayers work ya'll!! I had to lay flat and straight for 6 hours due to the femoral access but was able to go home the same night!
So the procedure ended up being diagnostic vs for treatment.
Their exact words were "You are cured!"
They will still do diagnostic cerebral angiograms to ensure no changes happen over the next 10 years. I will have them at 6 months and 12 months out from now, then 1 year, 3 years, and 5 years.
It is sometimes difficult to process my miraculous recovery and I know it is difficult for others as well. It is especially hard to hear people say "You look so great" "...like nothing ever happened". But, I am still struggling with memory loss, retaining new memories, processes, feeling like I don't know myself. I know the doctor said it could take up to a year to get back what I will, and I'm really trying hard not to be impatient with the process, but I admit it is frustrating. There are days where mostly everything seems to flow ok and other days every other turn I make is a new frustration.
My post-up appt is Wednesday, March 6th. More updates then.
After some miscommunication between the surgeon and the office staff they were finally able to schedule my procedure. I had the pre-op call mid last week. I was scheduled to check in at 6:30 am on Monday, February 11th with a procedure start time of 8:30 am.
About 11:30 am my husband was able to get an update from the doctor. It is truly a miracle! How BIG is our God?! They went in and there was nothing else to fix!!! The procedure on Christmas Eve they told us it was at most 70% complete. The Dr is amazed! He said this is so rare, he's never seen it happen to one of his patients. Prayers work ya'll!! I had to lay flat and straight for 6 hours due to the femoral access but was able to go home the same night!
So the procedure ended up being diagnostic vs for treatment.
Their exact words were "You are cured!"
They will still do diagnostic cerebral angiograms to ensure no changes happen over the next 10 years. I will have them at 6 months and 12 months out from now, then 1 year, 3 years, and 5 years.
It is sometimes difficult to process my miraculous recovery and I know it is difficult for others as well. It is especially hard to hear people say "You look so great" "...like nothing ever happened". But, I am still struggling with memory loss, retaining new memories, processes, feeling like I don't know myself. I know the doctor said it could take up to a year to get back what I will, and I'm really trying hard not to be impatient with the process, but I admit it is frustrating. There are days where mostly everything seems to flow ok and other days every other turn I make is a new frustration.
My post-up appt is Wednesday, March 6th. More updates then.
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