Wednesday, April 28, 2010
Wednesday, April 21, 2010
What is Moyamoya
I found out that I had Moyamoya the night before my surgery. I finally got this letter from Dr. Spaetzler and he said that and that he suggested a double bypass. The next morning, in the pre-op room, I told my neurosurgeon and he said, yes, he had the same diagnosis. I was only able to read a little bit about Moyamoya the night before; a godsend that I didn’t have time to obsess.
Moyamoya means “puff of smoke rising” in Japanese. It was first discovered less then 50 years ago, it seems to predominately happen to Japanese and it is inherited, but it is not a dominate gene disease. It occurs near the Internal Cartaroid Artery inside the brain, in the Circle of Willis. The blood vessel system is duplicated on both right and left side of brain, so you can see where it is regular and irregular when you compare both sides. On my left side, the blood starts to go up one vessel and there is this nest of tangled, thinly walled blood vessels, but they are nearly occluded. They say it looks like smoke rising. I think it looks like a rats nest. I have had this my whole life and yet didn’t really have any symptoms. The amazing thing about this is that my body built it’s own system around it; it re-routed blood vessels to get around this failing system. The human body is an amazing thing, it can overcome things without you even knowing it.
When they performed the surgery, they prepared me for a bypass; they would take a vein from my scalp and use it to route around the tangled nest, but they decided not to install it when they were inside my head. The figured that the work-around my body created was working well enough compared to the risk that they bypass had.
I will have an angiogram done in the next month to create a ground-zero image of my brain, to know when things are getting narrow or failing in the system and then I would have to undergo brain surgery again to do the bypass. Let’s hope that doesn’t happen anytime soon.
Moyamoya means “puff of smoke rising” in Japanese. It was first discovered less then 50 years ago, it seems to predominately happen to Japanese and it is inherited, but it is not a dominate gene disease. It occurs near the Internal Cartaroid Artery inside the brain, in the Circle of Willis. The blood vessel system is duplicated on both right and left side of brain, so you can see where it is regular and irregular when you compare both sides. On my left side, the blood starts to go up one vessel and there is this nest of tangled, thinly walled blood vessels, but they are nearly occluded. They say it looks like smoke rising. I think it looks like a rats nest. I have had this my whole life and yet didn’t really have any symptoms. The amazing thing about this is that my body built it’s own system around it; it re-routed blood vessels to get around this failing system. The human body is an amazing thing, it can overcome things without you even knowing it.
When they performed the surgery, they prepared me for a bypass; they would take a vein from my scalp and use it to route around the tangled nest, but they decided not to install it when they were inside my head. The figured that the work-around my body created was working well enough compared to the risk that they bypass had.
I will have an angiogram done in the next month to create a ground-zero image of my brain, to know when things are getting narrow or failing in the system and then I would have to undergo brain surgery again to do the bypass. Let’s hope that doesn’t happen anytime soon.
Saturday, April 17, 2010
Last Part and Beyond
So this Friday I saw my neurologist and he said everything is fine. I may eventually need another surgery to put in a bypass, but not yet. They will do another angiogram in the next 2 weeks as a marker of where I am now, then I only need to see him once a year. It's over. He said that one of the aneurysm he clipped was on the brink of rupturing. I feel so lucky, I could have been dead last month, but instead, I am alive and ready to get back to living. When I asked if there were any restrictions he said, None, no limitations, I could do anything, lift weight, run, sit in the sauna, drink a bottle of wine. It made me so happy to hear. Except no headstands, but that's cool.
I have some side effects, my head itches, but when I try to scratch it, it's numb on the skin. I feel like the room is always bobbing, like I have been on a boat, my sense of smell isn't working just right, short term memory can sometimes be an issue and last of all, I have a hard time with my eyes when going from tiny up close print to looking long distance. All of these are minor and will clear up in 6 months.
I have some side effects, my head itches, but when I try to scratch it, it's numb on the skin. I feel like the room is always bobbing, like I have been on a boat, my sense of smell isn't working just right, short term memory can sometimes be an issue and last of all, I have a hard time with my eyes when going from tiny up close print to looking long distance. All of these are minor and will clear up in 6 months.
Amazing Video
My friend Kelly Jackson sent me a link to this video of a relative of hers. It is stop motion and about brain stuff, and it is very moving.
http://www.youtube.com/watch?v=vc_lnnnekwk
http://www.youtube.com/watch?v=vc_lnnnekwk
Friday, April 16, 2010
How I Found Out - Pt II
So in October last year I went to see my endocrinologist at 6pm 2 days after my CT Scan and she pretty much laid out that I had an aneurysm and that she had already set up an appoint in a few days with a neurosurgeon, someone she has sent patients to many times for pituitary removal. Off I went. He looked at the CT Scan and said that I would need to undergo an angiogram in November, he felt like I had an AVM that could be treated by gamma knife surgery, where they screw a mask on your face, bolt that to a table and then beam a laser at your head, or I could have some angio surgery like coiling, where they go in the femural artery, and put something in the blood vessels in your brain. And I thought that was not great, but doable. He is the medical director of a local hospital's neurosurgery group, so I thought he was very skilled, but then I found out the truth.
I had to wait a month to see him, and when I went to my appointment, I waited for 1 and half hours. And not one person who was there felt they need to say anything. Pete was not able to come because both of our children were home sick. But I thought, no big deal, he's going to say what he told Pete right after the angio.
He came in the room, sat down, popped open the xray machine and showed me my brain, and then said, "You have an aneurysm and over here, this thing that we thought was an AVM, we don't know what it is, we've never seen it, and we'd like to send it to a neurosurgeon, Dr. Spaetzler, who has done thousands of open brain surgery, because they might know what it is, and how to deal with it. We can't do the simple surgeries, I can send you to my partner to clip the aneurysm, he does the open brain surgery. But let's wait and see what this doctor says.
I waited 9 weeks and called ever week and never got an answer. Thank the universe for my mom, she's really into medical stuff, has a love affair with the medical field. So she took it upon herself to go to Oregon Heath and Science University (OHSU) and inquire at the Neurosurgeons office. I called them, got in 4 days later to have a consultation with the director, was told that I needed to have surgery and she the guy who specialize in complicated projects, and he saw us 4 days later. That was March 5th. He and his crew, nicknamed Skull Base, were amazing with us, and they made the appointment to clip it in 10 days, so I could get through this and get on with my life. He also had talked to Dr. Spaetzler already about me, they were good friends and apparently I was the talk of the neurosurgery world, but hadn't a clue about that.
The night before my surgery I received a letter from the first doctors office, it was a copy of a faxed letter from Dr. Spaetzler, and he said that I had Moyamoya and he would recommend a bypass when they went in to clip the aneurysm. When we saw Dr. Delashaw, my surgeon, he came into the pre-op room and we told him what Dr. Spaetzler said and he said, "Yep, that's what the diagnoises is, it's Moyamoya, but if your brain vessels are functioning, we won't do the bypass. They went in and they found 4 anneurysms, the angios that were done only showed one, but under it were some buddies. And they decided not to do bypass.
I was out and 4 hours later I woke up, and I had the worst headache in my life, it was like a cartoon when someone gets hit with a big mallet or an anvil. But after 3 days in the hospital I was able to walk around very well and so they sent me home.
I had to wait a month to see him, and when I went to my appointment, I waited for 1 and half hours. And not one person who was there felt they need to say anything. Pete was not able to come because both of our children were home sick. But I thought, no big deal, he's going to say what he told Pete right after the angio.
He came in the room, sat down, popped open the xray machine and showed me my brain, and then said, "You have an aneurysm and over here, this thing that we thought was an AVM, we don't know what it is, we've never seen it, and we'd like to send it to a neurosurgeon, Dr. Spaetzler, who has done thousands of open brain surgery, because they might know what it is, and how to deal with it. We can't do the simple surgeries, I can send you to my partner to clip the aneurysm, he does the open brain surgery. But let's wait and see what this doctor says.
I waited 9 weeks and called ever week and never got an answer. Thank the universe for my mom, she's really into medical stuff, has a love affair with the medical field. So she took it upon herself to go to Oregon Heath and Science University (OHSU) and inquire at the Neurosurgeons office. I called them, got in 4 days later to have a consultation with the director, was told that I needed to have surgery and she the guy who specialize in complicated projects, and he saw us 4 days later. That was March 5th. He and his crew, nicknamed Skull Base, were amazing with us, and they made the appointment to clip it in 10 days, so I could get through this and get on with my life. He also had talked to Dr. Spaetzler already about me, they were good friends and apparently I was the talk of the neurosurgery world, but hadn't a clue about that.
The night before my surgery I received a letter from the first doctors office, it was a copy of a faxed letter from Dr. Spaetzler, and he said that I had Moyamoya and he would recommend a bypass when they went in to clip the aneurysm. When we saw Dr. Delashaw, my surgeon, he came into the pre-op room and we told him what Dr. Spaetzler said and he said, "Yep, that's what the diagnoises is, it's Moyamoya, but if your brain vessels are functioning, we won't do the bypass. They went in and they found 4 anneurysms, the angios that were done only showed one, but under it were some buddies. And they decided not to do bypass.
I was out and 4 hours later I woke up, and I had the worst headache in my life, it was like a cartoon when someone gets hit with a big mallet or an anvil. But after 3 days in the hospital I was able to walk around very well and so they sent me home.
Monday, April 12, 2010
Sunday, April 11, 2010
How I Found Out - Pt 1
We have to go back about 5 years to start. I was working on this terrible Hallmark movie and everyone on the crew got really sick at the end. We were working 14-16 hour days and Soda was about a year old, so I wasn't getting much rest. When I got this cold, my lymph-nods swelled, and when I got better, one went down, the other didn't. It grew in fact, and by spring 2006 it looked like a golf ball. I had been to the doctor several times, but we figured I was still sick, so after trying steroids and other meds, she finally sent me to an ENT and for a blood panel.
I went to see the ENT in April, and at that point I had been working on Coraline for about 5 months, and the ENT ran some tests that would blow your mind, where they stick lots and lots of needles in the neck, and then the results came back. I had thyroid cancer. He actually told me it wasn't that bad, it was cancer-lite, because most everyone recovers with no more cancer. But I apparently had it for 18 years, when they took out my thyroid, they had to remove 100 cancer nodules, and it had metastasized to the lymph-nods and to the muscle in my neck. But they got rid of it. And I have a cool scar across my neck.
This led to me seeing an endocrinologist on a regular basis, ever quarter my blood is tested and my medication level checked and once a year she runs a test that takes 5 days where I get these shots, then take radiation, get scanned and get the results. If you can make it to year 5 with no new thyroid cells, you're pretty much in the clear. So this last October was year 4, and my dr. said that since my blood levels are perfect and there have been no cells for the last 4 years, let's just do a CT Scan, it takes only 15 minutes and it's better then having to go through a weeks testing. I said great.
I have never had a CT Scan, and if you have not, here's how it goes, they lay you on a table, put in an IV, inject you with a dye and scan you. It's fast, I don't like the dye, makes me feel sick. But I got out quick, had a nice bowl of Pho and went on with my day. I got an email from my internist a few days later saying that the good news was that I had no thyroid cells, but that there was something irregular in my brain, probably some dye, and that she wanted me to have another CT scan because there was the chance it might not be dye, it might be an aneurysm. Then my endocrinologist office called and asked if I could come in the next day at 6pm, the doctor needed to speak with me. I knew that wasn't good news. That was Oct 2009.
I went to see the ENT in April, and at that point I had been working on Coraline for about 5 months, and the ENT ran some tests that would blow your mind, where they stick lots and lots of needles in the neck, and then the results came back. I had thyroid cancer. He actually told me it wasn't that bad, it was cancer-lite, because most everyone recovers with no more cancer. But I apparently had it for 18 years, when they took out my thyroid, they had to remove 100 cancer nodules, and it had metastasized to the lymph-nods and to the muscle in my neck. But they got rid of it. And I have a cool scar across my neck.
This led to me seeing an endocrinologist on a regular basis, ever quarter my blood is tested and my medication level checked and once a year she runs a test that takes 5 days where I get these shots, then take radiation, get scanned and get the results. If you can make it to year 5 with no new thyroid cells, you're pretty much in the clear. So this last October was year 4, and my dr. said that since my blood levels are perfect and there have been no cells for the last 4 years, let's just do a CT Scan, it takes only 15 minutes and it's better then having to go through a weeks testing. I said great.
I have never had a CT Scan, and if you have not, here's how it goes, they lay you on a table, put in an IV, inject you with a dye and scan you. It's fast, I don't like the dye, makes me feel sick. But I got out quick, had a nice bowl of Pho and went on with my day. I got an email from my internist a few days later saying that the good news was that I had no thyroid cells, but that there was something irregular in my brain, probably some dye, and that she wanted me to have another CT scan because there was the chance it might not be dye, it might be an aneurysm. Then my endocrinologist office called and asked if I could come in the next day at 6pm, the doctor needed to speak with me. I knew that wasn't good news. That was Oct 2009.
Thursday, April 8, 2010
Where I am at Today
Well I seem to have insomnia now, but I am very tired. It's a strange feeling wanting to go to sleep but you can't, but your body is exhausted. I feel like a 4 year old. I did finally get to sleep last night a 3am, and then a few times in the morning, but slept until 1pm. Nocturnal. Going to try to get this fixed soon. I have been walking about 6 blocks each day now for a week, feels good to get out. I am going to try to go grocery shopping with Pete tomorrow. Today was strong in the afternoon, I played with the kids, made them dinner, gave them a bath, did 2 loads of laundry and then put the kids to bed. After that, I grilled a steak and made 2 side dishes. So I felt human about half the day. I can feel it getting better slowly.
There is still this odd thing that happens daily where I feel like... well, like I am tripping, not full blown, but the very beginning of a trip when you start to notice things are not what they normally are. Walking for example, it's like I float a bit in space, my feet sometimes don't feel like they touch the ground, it's like I am not real. And then there are other moments where things are very surreal and cinematic, where the camera pans and there is no sound but the drops of rain touching the roof of the car, or the jingle of a dog's leash 2 blocks away, and then I pop out of it. I know it's my brain doing something strange.
I can feel where they cut my skull.
There is still this odd thing that happens daily where I feel like... well, like I am tripping, not full blown, but the very beginning of a trip when you start to notice things are not what they normally are. Walking for example, it's like I float a bit in space, my feet sometimes don't feel like they touch the ground, it's like I am not real. And then there are other moments where things are very surreal and cinematic, where the camera pans and there is no sound but the drops of rain touching the roof of the car, or the jingle of a dog's leash 2 blocks away, and then I pop out of it. I know it's my brain doing something strange.
I can feel where they cut my skull.
Monday, April 5, 2010
Spring
Today I walked to the lab to get my blood drawn. I do this ever quarter for testing for thyroid cells, which I have none to date. The key to thyroid cancer is to get to the 5 year mark. This is my 4th year. The walk was very windy, and I felt very tired walking, so weak and strange, but then I saw my first dogwood of the season and it helped me out. Then the phlebotomist and I were chatting and it turns out her best friend had brain surgery on Thursday, and now one of her eyes doesn't work, this reminded me why I am grateful and fortunate that my surgery went very well, 10-15% of patients wind up with a problem like no speech, vision issues etc.
So on the way back home I took a picture of that dogwood, just as a reminder to myself that I am lucky.
So on the way back home I took a picture of that dogwood, just as a reminder to myself that I am lucky.
Biscuit and Yoshi
My cat and dog have been very good support, they seem to never leave my side, which is very nice.
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Sunday, April 4, 2010
Little Steps
Today was Easter and I made dinner for the first time since surgery 3 weeks ago. It was a simple meal of grilled lamb, Israeli couscous, asparagus and salad, with a simple goat cheese and cracker starter. We finished with cake, which I got a New Seasons. I was so tired after my mom left, I had a 3 hour nap. Feeling stronger each day, and feel like I can take on just a little bit more. Looking forward to being all better once again.
Ironically, this is April, which was when I found out I had Thyroid Cancer 4 years ago. I currently have no trace of Thyroid cells anywhere in my body, which means in 12 months, I will have passed the 5 year mark, which means I can stop undergoing quarterly visits with my endocrinologist. The ironic part is once you pass the 10 year mark, life insurance companies will consider you risk free...but then the brain part came in, so I guess that's off. But at least I am cancer free, and that means a ton.
Ironically, this is April, which was when I found out I had Thyroid Cancer 4 years ago. I currently have no trace of Thyroid cells anywhere in my body, which means in 12 months, I will have passed the 5 year mark, which means I can stop undergoing quarterly visits with my endocrinologist. The ironic part is once you pass the 10 year mark, life insurance companies will consider you risk free...but then the brain part came in, so I guess that's off. But at least I am cancer free, and that means a ton.
Friday, April 2, 2010
Check Up
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OHSU Neurosurgery Office
Yesterday I went to the doctor for a check up. My sutures look excellent, I seem to be progressing very well. I seem to be doing everything I am supposed to be doing, which is apparently sleeping. I feel like I am turning into a cat.
I have to say if you are going to have brain work done in Oregon, you want to use OHSU. They are very professional and compassionate. Dr. Delashaw is an amazing doctor. And the view from the 8th floor is great.
My next check up is April 16th. And they say I should be back to 100% normal by June.
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