It's hard to believe I had brain surgery three weeks ago. The only problems I have right now are my general stamina, my headaches (which are "normal" headaches now), and vision fatigue. I've been walking for 20 minutes several days a week, trying to improve my stamina. I find that I no longer need to sleep during the day, but my eyes get tired, so I have to close them and listen to tv or music so I don't get bored. My headaches are of the tension kind, not the throbbing-blocked-CSF kind, probably from subconsciously keeping my head still, afraid to hurt it. I have a post-op appointment with my surgeon next week, after which I should be cleared for normal activities. I don't plan on getting back to my pre-surgery routine quite yet, though. But I will be glad to have a little more freedom to do what I like.
My dance with the medical community is far from over, however. Now that I'm suspected of having tuberous sclerosis complex, I face a slurry of tests encompassing almost all of my body systems, as well as more brain MRIs. If the genetic test is positive for the mutation, I will have to have my children tested, since each of them will have a 50% chance of having the mutation, requiring them to be monitored throughout their lives. My parents and my siblings will also have to be tested in order to determine if I am the first in the family, or if I inherited it from one of my parents. I have contacted The Herscot Center for TSC at Massachusetts General Hospital, a place that specializes in testing and treating people with tuberous sclerosis.
Tuesday, November 23, 2010
Tuesday, November 16, 2010
Two Weeks
It's been two weeks since my surgery and I almost feel like I'm back to normal. I can control any headaches with regular Tylenol and my only challenge is continuing to lay low when I feel so good. The doctor says no housework for a month and I'm committed to respecting that restriction. I still have trouble focusing on long term projects, but I'm not sure if it's from the surgery itself or from a lack of motivation. I've read it's not unusual to feel a little blue as the recovery seems to stall, so I try to keep that in mind. I can look forward to the holiday season and do some on line shopping early. I can complete crossword puzzles. I can read, although the novels I used to choose can't seem to hold my attention like before, but I try anyway. My head doesn't feel totally normal yet, sort of like things are working up there. When I get tired, it's as if I took some Nyquil, slightly detached and loopy. My husband let me take a ten minute walk by myself today. Not too far and I took my cell phone. I'm beginning to understand why the elderly hate to give up their freedom. I'm basically optimistic about my recovery.
Saturday, November 13, 2010
Accurate (and funny) Craniotomy Blog
This one helped me quite a bit:
http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html
http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html
Friday, November 12, 2010
At home
Once back at home, I went straight to bed. I wasn't allowed to shower until the next day, so my hair was caked with blood and betadine, but I didn't care. The house was quiet. No more buzzing, beeping, or nasty smells of the ICU. I sank down into my own mattress and slept.
The next morning, the first thing I did was shower! I felt like a new person, despite the pain medication I was on that kept me feeling a bit loopy, and the corticosteroids that kept my brain from swelling, but also made me hungry all the time.
Over the next few days, I noticed some changes. The biggest one being that I no longer had a throbbing headache all the time from the CSF buildup. I also noticed some clicking noises in my head, which I had been prepared for by reading another craniotomy blog. Things were settling in deep inside my brain. Glad I knew about that beforehand.
It's been ten days since my surgery and I had my post-op appointment with the surgeon today. He took out the staples and I feel a whole lot lighter. We discussed the future plan of action, basically a wait and see treatment plan. The tumor is benign and slow growing. The biopsy came back as a Subependymal Giant Cell Astrocytoma (SEGA). It is usually only found in people with a certain genetic mutation called Tuberous Sclerosis Complex. I will have to be genetically tested for this, because the syndrome comes with a whole host of other benign, but sometimes problematic tumor growths throughout several systems of the body. My whole family has to be tested as well, so we can discover if my mutation was spontaneous or passed on genetically.
Right now, I'm mostly trying to concentrate on recovering from this surgery, and worry about the rest later.
The next morning, the first thing I did was shower! I felt like a new person, despite the pain medication I was on that kept me feeling a bit loopy, and the corticosteroids that kept my brain from swelling, but also made me hungry all the time.
Over the next few days, I noticed some changes. The biggest one being that I no longer had a throbbing headache all the time from the CSF buildup. I also noticed some clicking noises in my head, which I had been prepared for by reading another craniotomy blog. Things were settling in deep inside my brain. Glad I knew about that beforehand.
It's been ten days since my surgery and I had my post-op appointment with the surgeon today. He took out the staples and I feel a whole lot lighter. We discussed the future plan of action, basically a wait and see treatment plan. The tumor is benign and slow growing. The biopsy came back as a Subependymal Giant Cell Astrocytoma (SEGA). It is usually only found in people with a certain genetic mutation called Tuberous Sclerosis Complex. I will have to be genetically tested for this, because the syndrome comes with a whole host of other benign, but sometimes problematic tumor growths throughout several systems of the body. My whole family has to be tested as well, so we can discover if my mutation was spontaneous or passed on genetically.
Right now, I'm mostly trying to concentrate on recovering from this surgery, and worry about the rest later.
Thursday, November 11, 2010
Preop and Post-op
The week before my surgery, I was scheduled for pre-op bloodwork and a physical. The nurses ushered me in rather quickly, weighed me and took my vitals. (I was happy to discover that I had met my months long goal of losing 15 lbs, something of a bright side.) Then I was hooked up to an EKG for a few minutes, all checked out normal. They drew my blood, tested me for MRSA by swabbing the inside of my nose and cheeks (something surprising, but for which I was grateful they were taking such precautions), and told me if I tested positive for MRSA, my PCP would prescribe an antibiotic before surgery. Lastly, the RN came in and began to describe the entire procedure, leaving nothing to the imagination. I wanted all the details I could get. The surgery had yet to be given a time of day, but the hospital would call the night before to tell me when to report in. She told me the surgeon had given the procedure a 4-6hr time frame, but that he was meticulous and took all the time he needed. I would have an intraventricular drain, and a turban-like head dressing, and I would spend at least one night in the ICU before moving on to the Step-Down rooms. She detailed where I was to report before surgery, and all of the interviews and repetitive questions I would be asked, what to expect right before I went into the operating room. Then she introduced me to an anesthesiologist who went over my medical history, commenting how healthy I was, besides the brain tumor. After leaving the hospital, I felt very well informed, grateful to the thorough explainations of the nurses. Much of what they said turned out to be quite accurate.
The next day, I had a brief and less comprehensive visit with the surgeon. He went over some of the same details the nurses had the day before. He then showed me where the scalp incision would be--just behind the hairline from ear to ear--which surprised me. I didn't think it would be that big! This led into a discussion about haircuts, which seemed so absurd, given the gravity of the situation. Then I asked stitches or staples, as if it mattered. My fate was sealed for sometime on Tuesday, November 2.
On Friday, October 29, I received a confirmation phone call about an MRI that I was scheduled for before the surgery. No one had told me about this, so I was a bit confused. When I called the hospital, they explained that the MRI was scheduled for 8am on Tuesday and it's purpose was for brain mapping. This was news to me. But at least I knew I had to be at the hospital on surgery day sometime before 8am.
The surgery was scheduled for 10:20am. We arrived at the admissions desk at 6am sharp, with plenty of time to wait. They brought me into a waiting room, where we spent the next couple of hours waiting nervously between periods of inane activity. I changed into a hospital gown, placed my belongings in a clear plastic bag, and waited. A hospital representative wheeled in a mobile computer station and asked a bunch of questions, then left. We waited. A nurse came in and started an IV line in my hand, then asked me some of the same questions. Finally, the surgeon came in with hair clippers and a jar of sticky-dot markers to place on my head before the brain mapping MRI. He explained that once in the operating room, he could use the brain mapping and markers as sort of a "brain gps". Sounded pretty cool. He shaved my head himself, something I wasn't expecting, and then placed the markers along my hairline and over the incision area (picture below). Then they wheeled me down to the MRI where I had a quick (comparatively speaking) scan that took about 6-7 minutes. Back to the waiting room for a few minutes, where my family gathered to see me and help the time pass quicker.
Before I knew it, the time had arrived and they moved me to the pre-op area. People started bustling around me, introducing themselves as members of the team that would be working around my head. The surgeon came and took the brain mapping MRI disk for a preview and came back with the unfortunate news that it would have to be repeated. The scan had not included all of the markers, therefore it was incomplete and useless. Down to the MRI again. Then back to the pre-op area. The anesthesiologist came by and taped the back of my left hand to a half moon shaped blue wedge, intended to angle my wrist for an easy approach to my radial artery. I had been told all of this would be done while I was under anesthesia, and I was glad when the nurse said I would be given something to help me relax. I have no idea what time it was. I vaguely remember being wheeled into the OR and being amazed at how white everything looked. Someone asked me what I could see. I think I said "white ceiling".
I woke up in post-op, apparently around 10:30pm. The surgery started late and lasted about 6 hours.( I'm lucky that I was the one sleeping and not worrying.) I was surrounded by family who all seemed to look like they were in an old, sepia-toned photograph. The light was so yellow compared to the OR. I tried to make eye contact with everyone, so they would know I was ok. Then I was wheeled into the ICU.
The first night in the ICU was almost blissful. So medicated, no worries, so tired. It was all over. Sure, my head was wrapped in a turban and I had drains coming out of my brain, but my nurse was excellent, like clockwork with those meds. I didn't even have to ask. I slept.
On Wednesday morning, when my first visitors arrived, I was still pretty upbeat, I think. Expecting to be moved to a different room, where I could have more peace and quiet.(The ICU is a very noisy place, especially at night.) Everything I had read about craniotomies mentioned that the dressings were removed after 24 hrs. I looked forward to that milestone, as well as getting the drain out of my head. It made me cringe to know that there was a tube connecting the innermost part of my brain to the outside world. I panicked when they had to bring me down to the MRI for a post-op scan. Images of a forgotten IV stand being tugged behind the gurney, or getting stuck in the elevator doors raced through my brain. I could imagine the wormy feeling of the tubes sliding out from my head. I began to cry--uncontrollably. I hadn't expected this kind of panic. But it got the best of me. When the first 24 hours passed, and my turban remained in place, it added another element of restriction and confinement. I hadn't been able to sleep at all the second night in the ICU, with all the alarms and noises. I was seriously sleep deprived, not good for someone who's supposed to be healing. I began to have more crying fits and panic attacks about my head being wrapped. I complained to the nurses that I was going stir crazy and I couldn't sleep. I was exhausted, physically and mentally. The thought of spending another night in the ICU was torture, but the surgeon insisted that I remain bandaged until the pressures in my brain were stabilized. Now I understand the reasoning, but at the time I felt like I was being tortured with sleep deprivation. On top of everything, I couldn't pee. I just wanted to go home.
On the Friday after my surgery, my surgeon's hospital colleague finally came into the room and began to unwrap my head. I have never been so happy in my life. He told me I'd go home that very day. I was still squeamish about getting the drain pulled out, but it had been clamped overnight and there had been no troubles with increased pressure. He showed a medical student what to do, and she proceeded to pull out the drain. Thankfully, I felt nothing. All my worries turned to mush. It was a little gross that some of the warm CSF dribbled onto my head and down my neck. Ick. But that was the worst of it. A few hours later, I was discharged directly from the ICU, something that never happens, according to the nurses.
Of all the reading I did beforehand, trying to prepare myself for the craniotomy, I never once came across any account of the hopeless, suffocating feeling of having my head wrapped for days. Maybe I'm the only one that will ever be bothered by it. But maybe someone might read this and be prepared for the possibility that the wrappings may not come off in 24 hours.
The next day, I had a brief and less comprehensive visit with the surgeon. He went over some of the same details the nurses had the day before. He then showed me where the scalp incision would be--just behind the hairline from ear to ear--which surprised me. I didn't think it would be that big! This led into a discussion about haircuts, which seemed so absurd, given the gravity of the situation. Then I asked stitches or staples, as if it mattered. My fate was sealed for sometime on Tuesday, November 2.
On Friday, October 29, I received a confirmation phone call about an MRI that I was scheduled for before the surgery. No one had told me about this, so I was a bit confused. When I called the hospital, they explained that the MRI was scheduled for 8am on Tuesday and it's purpose was for brain mapping. This was news to me. But at least I knew I had to be at the hospital on surgery day sometime before 8am.
The surgery was scheduled for 10:20am. We arrived at the admissions desk at 6am sharp, with plenty of time to wait. They brought me into a waiting room, where we spent the next couple of hours waiting nervously between periods of inane activity. I changed into a hospital gown, placed my belongings in a clear plastic bag, and waited. A hospital representative wheeled in a mobile computer station and asked a bunch of questions, then left. We waited. A nurse came in and started an IV line in my hand, then asked me some of the same questions. Finally, the surgeon came in with hair clippers and a jar of sticky-dot markers to place on my head before the brain mapping MRI. He explained that once in the operating room, he could use the brain mapping and markers as sort of a "brain gps". Sounded pretty cool. He shaved my head himself, something I wasn't expecting, and then placed the markers along my hairline and over the incision area (picture below). Then they wheeled me down to the MRI where I had a quick (comparatively speaking) scan that took about 6-7 minutes. Back to the waiting room for a few minutes, where my family gathered to see me and help the time pass quicker.
Before I knew it, the time had arrived and they moved me to the pre-op area. People started bustling around me, introducing themselves as members of the team that would be working around my head. The surgeon came and took the brain mapping MRI disk for a preview and came back with the unfortunate news that it would have to be repeated. The scan had not included all of the markers, therefore it was incomplete and useless. Down to the MRI again. Then back to the pre-op area. The anesthesiologist came by and taped the back of my left hand to a half moon shaped blue wedge, intended to angle my wrist for an easy approach to my radial artery. I had been told all of this would be done while I was under anesthesia, and I was glad when the nurse said I would be given something to help me relax. I have no idea what time it was. I vaguely remember being wheeled into the OR and being amazed at how white everything looked. Someone asked me what I could see. I think I said "white ceiling".
I woke up in post-op, apparently around 10:30pm. The surgery started late and lasted about 6 hours.( I'm lucky that I was the one sleeping and not worrying.) I was surrounded by family who all seemed to look like they were in an old, sepia-toned photograph. The light was so yellow compared to the OR. I tried to make eye contact with everyone, so they would know I was ok. Then I was wheeled into the ICU.
The first night in the ICU was almost blissful. So medicated, no worries, so tired. It was all over. Sure, my head was wrapped in a turban and I had drains coming out of my brain, but my nurse was excellent, like clockwork with those meds. I didn't even have to ask. I slept.
On Wednesday morning, when my first visitors arrived, I was still pretty upbeat, I think. Expecting to be moved to a different room, where I could have more peace and quiet.(The ICU is a very noisy place, especially at night.) Everything I had read about craniotomies mentioned that the dressings were removed after 24 hrs. I looked forward to that milestone, as well as getting the drain out of my head. It made me cringe to know that there was a tube connecting the innermost part of my brain to the outside world. I panicked when they had to bring me down to the MRI for a post-op scan. Images of a forgotten IV stand being tugged behind the gurney, or getting stuck in the elevator doors raced through my brain. I could imagine the wormy feeling of the tubes sliding out from my head. I began to cry--uncontrollably. I hadn't expected this kind of panic. But it got the best of me. When the first 24 hours passed, and my turban remained in place, it added another element of restriction and confinement. I hadn't been able to sleep at all the second night in the ICU, with all the alarms and noises. I was seriously sleep deprived, not good for someone who's supposed to be healing. I began to have more crying fits and panic attacks about my head being wrapped. I complained to the nurses that I was going stir crazy and I couldn't sleep. I was exhausted, physically and mentally. The thought of spending another night in the ICU was torture, but the surgeon insisted that I remain bandaged until the pressures in my brain were stabilized. Now I understand the reasoning, but at the time I felt like I was being tortured with sleep deprivation. On top of everything, I couldn't pee. I just wanted to go home.
On the Friday after my surgery, my surgeon's hospital colleague finally came into the room and began to unwrap my head. I have never been so happy in my life. He told me I'd go home that very day. I was still squeamish about getting the drain pulled out, but it had been clamped overnight and there had been no troubles with increased pressure. He showed a medical student what to do, and she proceeded to pull out the drain. Thankfully, I felt nothing. All my worries turned to mush. It was a little gross that some of the warm CSF dribbled onto my head and down my neck. Ick. But that was the worst of it. A few hours later, I was discharged directly from the ICU, something that never happens, according to the nurses.
Of all the reading I did beforehand, trying to prepare myself for the craniotomy, I never once came across any account of the hopeless, suffocating feeling of having my head wrapped for days. Maybe I'm the only one that will ever be bothered by it. But maybe someone might read this and be prepared for the possibility that the wrappings may not come off in 24 hours.
Wednesday, November 10, 2010
A week and a day
It's been a week and a day since my craniotomy and I feel like there is some information I'd like to share for anyone who may be going through the same experience. I've read a few blogs from others who've had craniotomies, and they helped prepare me for things I never would have expected. My thanks to them.
In the following days, I hope to recap my experiences from my early symptoms, through to the discovery of the tumor and the diagnosis, as well as the steps in recovery process.
In the following days, I hope to recap my experiences from my early symptoms, through to the discovery of the tumor and the diagnosis, as well as the steps in recovery process.
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