5.31.2010
The Recovery
After the surgery, I'll spend the night in ICU. I'll then spend a few days in the hospital. I've been told I'll be in pain, shocker. Surprisingly, though, once I'm sent home, it's not to go lay in bed. I'm supposed to try to be active (as in walking around and getting out of the house, not playing contact sports or bungee jumping). I was so relieved to hear this. I figured I was giving up my summer with my kids for my recovery, and that's not at all the case. I know I'll be anxious to do more than I can and it will be frustrating at times. I'm really not sure what to expect, but I'll let you know...
My nurse has mentioned it will be tricky with the kids, heavy lifting, driving, sleeping, etc. I guess I'll figure it out and learn as I go.
My nurse has mentioned it will be tricky with the kids, heavy lifting, driving, sleeping, etc. I guess I'll figure it out and learn as I go.
The Surgery
This is for those of you who actually want to know how it's done...this is my disclaimer, if you don't want to know, don't read on!
The surgery should take about 3 or 4 hours. I'll be face down on something like a massage table, unfortunately under much different circumstances. Yes, they have to shave my head (everyone asks that, so I'll just get that out of the way). Thankfully, my surgeon only shaves the minimal amount of hair necessary. Some neurosurgeons shave the bottom half of the head; that may have been a deal breaker for me. I don't mean to be vain, but this is horrible enough as it is, why add a half bald head to the equation if not necessary? I'm just saying...
Anyway, they'll make a vertical incision, about 4" or so, at the base of my skull down my neck. They'll remove about a quarter size portion or more of my skull, I'm assuming with some sort of saw, and then my top vertebrae and possibly the one underneath. After than it's up in the air. Awesome, huh? So my poor family in the waiting room gets to sit and wait to see what happens next. I'll find out in recovery if after that point they decided to:
a. stitch me up (highly unlikely due to the amount of pain I'm in which indicates a great deal of pressure);
b. remove the duraand replace it with bovine cardiac tissue (that's fancy talk for pig heart) to provide more space or;
c. remove the dura, spilt (as in CUT) the brain tonsil to remove even more pressure and then add the pig heart, I mean bovine cardiac tissue.
So, I'm not really sure of the exact details of which surgery I'm having; they'll decide once I'm in the operating room and they see what they are working with. It's rather unsettling, to be honest. But again, I feel most sorry for my family. I know what's it's like to be sitting in the waiting room doing exactly that...waiting. Waiting for my mom to come out of surgery was torture. I wish there was some way I could speed time or give them the peace I'll be granted by my heavy sedation. Obviously I'm worried and scared out of my mind, but there's a tremendous sense of relief that comes with knowing that I don't have to do that waiting. I just have to show up and give them my arm to be put to sleep for a while.
And the moment I wake up and can articulate an intelligent thought, and I can feel my fingers and toes and see my kids, nothing else will matter.
The surgery should take about 3 or 4 hours. I'll be face down on something like a massage table, unfortunately under much different circumstances. Yes, they have to shave my head (everyone asks that, so I'll just get that out of the way). Thankfully, my surgeon only shaves the minimal amount of hair necessary. Some neurosurgeons shave the bottom half of the head; that may have been a deal breaker for me. I don't mean to be vain, but this is horrible enough as it is, why add a half bald head to the equation if not necessary? I'm just saying...
Anyway, they'll make a vertical incision, about 4" or so, at the base of my skull down my neck. They'll remove about a quarter size portion or more of my skull, I'm assuming with some sort of saw, and then my top vertebrae and possibly the one underneath. After than it's up in the air. Awesome, huh? So my poor family in the waiting room gets to sit and wait to see what happens next. I'll find out in recovery if after that point they decided to:
a. stitch me up (highly unlikely due to the amount of pain I'm in which indicates a great deal of pressure);
b. remove the duraand replace it with bovine cardiac tissue (that's fancy talk for pig heart) to provide more space or;
c. remove the dura, spilt (as in CUT) the brain tonsil to remove even more pressure and then add the pig heart, I mean bovine cardiac tissue.
So, I'm not really sure of the exact details of which surgery I'm having; they'll decide once I'm in the operating room and they see what they are working with. It's rather unsettling, to be honest. But again, I feel most sorry for my family. I know what's it's like to be sitting in the waiting room doing exactly that...waiting. Waiting for my mom to come out of surgery was torture. I wish there was some way I could speed time or give them the peace I'll be granted by my heavy sedation. Obviously I'm worried and scared out of my mind, but there's a tremendous sense of relief that comes with knowing that I don't have to do that waiting. I just have to show up and give them my arm to be put to sleep for a while.
And the moment I wake up and can articulate an intelligent thought, and I can feel my fingers and toes and see my kids, nothing else will matter.
Why the blog?
My very wonderful, loving, patient boyfriend Mike came up with this blog idea; he knows me well. I love to write. I like writing much better than talking, he knows that too. I think he saw this as a way for me to journal about all I was going through, which would be really therapeutic, and then I could share what was going on with my friends and family at the same time. I love the idea. When everything happened with my mom's brain surgery, I felt really awkward sending all the mass emails. Mass emails can be so impersonal. Furthermore, I didn't know who to include. I also wanted to write EVERYTHING in those emails because I needed to talk to someone. It was the most difficult time of my life, and a mass email was NOT a helpful outlet.
So when I found out about my situation and sat down to compose my first email, you can imagine how thrilled I was. But then the other night when Mike handed me his laptop with this Blog, I realized this time would be different. I was relieved that I could share this experience in a different way, perhaps even with people going through the same thing, and I felt hopeful.
This blog is perfect because I feel much more comfortable writing anything and everything. Anyone can read it if they want. I don't have to worry about bothering people with a ton of emails, or not giving enough information to those who want more. I'll put everything (well almost everything, there are some things I'm just not putting on the Internet), but I'm putting everything I need to talk about on here, and anyone who wants to know whats going on can read it. So if you have a question, just ask!
Thank you Mike :)
So when I found out about my situation and sat down to compose my first email, you can imagine how thrilled I was. But then the other night when Mike handed me his laptop with this Blog, I realized this time would be different. I was relieved that I could share this experience in a different way, perhaps even with people going through the same thing, and I felt hopeful.
This blog is perfect because I feel much more comfortable writing anything and everything. Anyone can read it if they want. I don't have to worry about bothering people with a ton of emails, or not giving enough information to those who want more. I'll put everything (well almost everything, there are some things I'm just not putting on the Internet), but I'm putting everything I need to talk about on here, and anyone who wants to know whats going on can read it. So if you have a question, just ask!
Thank you Mike :)
5.29.2010
Chiari Decompression Surgery
I'm having brain surgery. No matter how many times I say that, to myself or out loud to other people, it sounds absolutely ridiculous. There's no way it can actually be true. I'm a 33 year old woman, who up until recently, was very healthy. I eat well, exercise, and with the exception of having my two children, I've never even been in the hospital, yet I'm having brain surgery. Even as I type it, on my computer screen it looks fictional. Yet it's not...and it's happening soon, very soon.
June 14th, two weeks from Monday. I just scheduled it this past Tuesday and it's going to be here before I know it, which will probably be for the better because I think that sitting around any loner trying to believe this is actually going to happen it would drive me crazy (ok, crazier than I'm already feeling).
This past January I was diagnosed with a Chiari Malformation. Basically, the base of my skull is too small for my brain (I used to mess that up and say my brain was too big for my skull, I liked that explanation better, lol). So with nowhere else to go, my brain has descended into my neck/spinal column, down to my 2nd vertebrae. It is in between my brain stem and vertebrae where there is only supposed to be spinal fluid, causing a ton of pressure and pain.
At first, I decided to be treated for the pain with medication. After months of prescriptions that proved to be ineffective, I tried alternative medicine (massage, acupuncture, you name it). I was desperate. But my condition only worsened. I was in complete agony and eventually was put on steroids and narcotics (as strong as morphine) because the pain was so bad. The pain is all in the back of my head, neck and shoulders and then causes headaches & back pain. It has even affected my ears; I have chronic earaches and my hearing has been affected. I'm in pain everyday. I seriously cannot remember what it feels like to feel normal. This is why I'm having the surgery.
My neurologists were at a loss for treating me and agreed that I needed to do this. The procedure is called Chiari Decompression because it is supposed to relieve the pressure. I sometimes feel like my head is going to explode right through my ears, so the name sounds fitting.
June 14th is the date I go in to have my head decompressed, can't wait...
June 14th, two weeks from Monday. I just scheduled it this past Tuesday and it's going to be here before I know it, which will probably be for the better because I think that sitting around any loner trying to believe this is actually going to happen it would drive me crazy (ok, crazier than I'm already feeling).
This past January I was diagnosed with a Chiari Malformation. Basically, the base of my skull is too small for my brain (I used to mess that up and say my brain was too big for my skull, I liked that explanation better, lol). So with nowhere else to go, my brain has descended into my neck/spinal column, down to my 2nd vertebrae. It is in between my brain stem and vertebrae where there is only supposed to be spinal fluid, causing a ton of pressure and pain.
At first, I decided to be treated for the pain with medication. After months of prescriptions that proved to be ineffective, I tried alternative medicine (massage, acupuncture, you name it). I was desperate. But my condition only worsened. I was in complete agony and eventually was put on steroids and narcotics (as strong as morphine) because the pain was so bad. The pain is all in the back of my head, neck and shoulders and then causes headaches & back pain. It has even affected my ears; I have chronic earaches and my hearing has been affected. I'm in pain everyday. I seriously cannot remember what it feels like to feel normal. This is why I'm having the surgery.
My neurologists were at a loss for treating me and agreed that I needed to do this. The procedure is called Chiari Decompression because it is supposed to relieve the pressure. I sometimes feel like my head is going to explode right through my ears, so the name sounds fitting.
June 14th is the date I go in to have my head decompressed, can't wait...
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