No, today is NOT my birthday.
By now, everyone knows I had my second brain surgery only sixteen short days ago on my birthday (April 16-just in case you want to make a note to send me something FABULOUS next year- I'll pause briefly for you to make that note on your calendar.)
I literally waited about forty-five seconds for you to make the notation.
I'm singing because yesterday was a good day.
Yes, I spent eight long hours in our bumpity-bump truck with my head totally uncomfortable the entire time..but two...no, make it three very important things happened yesterday.
Again..in order of importance:
1. Bob, Lindsey and I got to have lunch with Katrina and Misty!
2. I got a BIRTHDAY CAKE!
3. My neuro report card was pretty much an A+ and I'm stitch-free!
Did I mention I got a BIRTHDAY CAKE?
The real reason I got a cake is because almost every day I have said, "Wow, I really do want a piece of birthday cake!" So Lindsey and Bob covertly got with Katrina and Misty--and VOILA! CAKE!
(They all knew I'd never shut up about it otherwise!)
SO! After lunch outside of Houston, we trucked on in to the Medical Center and I saw Dr. Kim.
He was very pleased with my progress so far. We are all very pleased.
Yes, I've still got a little bit of pain..as a matter of fact, I feel like my head is raw on one side.
It's pretty uncomfortable, but I have dealt with much worse, so no worries.
My discussion with Dr. Kim resulted in the following:
He says I'm complicated... that's not a revelation..but I was surprised to know he thinks I'm a complicated case. You see, both Chiari Malformation and Arachnoid Cysts can be congenital-both can be connected to Ehlers-Danlos Syndrome...so it's kind of like a what-came-first-the-chicken-or-the-egg thing (as a side bar-I believe God created the chicken first..but not sure what HE did with the Chiari-Cyst thing).
If I had syringomyelia like many Chiarians, then that would be more complex, but not complicated.
Complicated could easily be my middle name.
Anyway-
He said if I go a year and a half with no recurrence of symptoms, this was likely a permanent fix.
He said if I go three-four years, we can be sure of it.
He further stated, if symptoms recur, I will have to have a cysto-peritoneal shunt, as opposed to the internal shunts I have now. The little ones I have now are contained basically in my brain, the C-P would go from my brain, down through my body into my peritoneum--basically the abdominal cavity.
He is very hopeful this is a fix.
I'm setting my sights on November 2015. If I can get there with minimal issues, I'll feel like this was successful.
Already, I feel more clear headed, my speech comes more freely, vision has improved and I have improved feeling in my left hand, leg and left side of my face. My hearing is still less than optimal, however, he said that can take awhile to improve, so I'm practicing patience.
While typing this I've experienced two of those horribly painful things I call "brain spasms". Literally, I feel as though my brain squeezes into a tight ball and it hurts so badly. I know my pain meds don't help it..but I'm going to take some anyway, get away from the brightness of this laptop and rest awhile.
I will report more over the next few days..Stay tuned..I'm developing a TOP 10 THINGS TO NOT DO AFTER BRAIN SURGERY list..and how found out they were things to NOT DO! I will post it soon.
Thank you again for your prayers, support and notes of encouragement!
Did I mention I got a BIRTHDAY CAKE?
 |
| Bob and I with my surprise cake..as you may notice- I am only 8 years old! Thank goodness they didn't put 40+ candles on this cake! |
 |
| Katrina and I in the front, Misty in the back/middle..My two precious friends. |
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| Bob, Lindsey and I. I'm not quite sure what or who they are looking at..but you get the idea..it was a fun lunch! |
The real reason I got a cake is because almost every day I have said, "Wow, I really do want a piece of birthday cake!" So Lindsey and Bob covertly got with Katrina and Misty--and VOILA! CAKE!
(They all knew I'd never shut up about it otherwise!)
SO! After lunch outside of Houston, we trucked on in to the Medical Center and I saw Dr. Kim.
He was very pleased with my progress so far. We are all very pleased.
Yes, I've still got a little bit of pain..as a matter of fact, I feel like my head is raw on one side.
It's pretty uncomfortable, but I have dealt with much worse, so no worries.
My discussion with Dr. Kim resulted in the following:
He says I'm complicated... that's not a revelation..but I was surprised to know he thinks I'm a complicated case. You see, both Chiari Malformation and Arachnoid Cysts can be congenital-both can be connected to Ehlers-Danlos Syndrome...so it's kind of like a what-came-first-the-chicken-or-the-egg thing (as a side bar-I believe God created the chicken first..but not sure what HE did with the Chiari-Cyst thing).
If I had syringomyelia like many Chiarians, then that would be more complex, but not complicated.
Complicated could easily be my middle name.
Anyway-
He said if I go a year and a half with no recurrence of symptoms, this was likely a permanent fix.
He said if I go three-four years, we can be sure of it.
He further stated, if symptoms recur, I will have to have a cysto-peritoneal shunt, as opposed to the internal shunts I have now. The little ones I have now are contained basically in my brain, the C-P would go from my brain, down through my body into my peritoneum--basically the abdominal cavity.
He is very hopeful this is a fix.
I'm setting my sights on November 2015. If I can get there with minimal issues, I'll feel like this was successful.
Already, I feel more clear headed, my speech comes more freely, vision has improved and I have improved feeling in my left hand, leg and left side of my face. My hearing is still less than optimal, however, he said that can take awhile to improve, so I'm practicing patience.
While typing this I've experienced two of those horribly painful things I call "brain spasms". Literally, I feel as though my brain squeezes into a tight ball and it hurts so badly. I know my pain meds don't help it..but I'm going to take some anyway, get away from the brightness of this laptop and rest awhile.
I will report more over the next few days..Stay tuned..I'm developing a TOP 10 THINGS TO NOT DO AFTER BRAIN SURGERY list..and how found out they were things to NOT DO! I will post it soon.
Thank you again for your prayers, support and notes of encouragement!
Thank you for sharing your experience, and Happy Birthday, again!
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