It's time for another CT scan. One more concentrated on the tumor. The CT scan itself is nothing but I was getting anxious because of the contrast solution and also imagining the closeness of warding day. Imagining I will soon be warded and then be a vegetable being cooked on was scaring the hell out of me. CT time. The uncle in front of me had to change clothes. Fortunately I didn't have to and the great thing, no contrast solution.
I also take the chance to try to get some anticonvulsion medication so that I can drive. We manage to see one of the medical officers at the neuro clinic, The one I thought was Tinnesh, a Dr Sutharshan. I ask if I can get on anticonvulsion medication. He said that it was not a blanket medication. He asked whether I had convulsions. I said no. He also said that it had many side effects anyways, some not suitable for driving ie drowsiness and loss of muscle control, etc. So basically I'm stuck. Doing an internet search on anticonvulsion drugs shows all the drugs has bad side effects. Looks like I'm stuck.
Thursday, January 29, 2009
the wizard with a title
So it's time to see Dato' Dr Hj Fadzli Cheah.
His PR is pretty good. A stark contrast to the receptionist and nurse who seems so disconnected and unfriendly. He greets us and ask about my symptoms and then do a physical checkup. Can I have a tune-up? He also mentioned that the right eye is slightly swollen due to the swelling in the brain pressing on the optic nerve.
We talk about my condition. I ask him about the seizures and he said yes it's possible but that it may also happen after the op. What? It's gonna be a permanent souvenir like the scar! That sucks soo bad. :(
He also explained the surgical procedure. But it was very short, basically open this take it out then the ENT cracks this and take that out. That's it. I know that but the crack part was new and it's the part with sthe mell nerve. I will have to ask Dr Cheang (my designated surgeon) about this. He did mention that it should not be difficult as the tumor is close to the front and won't be a deep excavation to get at it. This was reassurring.
Also during the consultation Dr Tinnesh came for something. Dr Fadzli asked him in and asked about my case. He asked if I knew him and I just said sure. But the wife said no this was not the guy we met at the hospital. I was in a blur. But I was surprised that there was a connection between the 2 hospitals. Dr Fadzli said that they have a relationship. I guess it's a small world for them. They quickly crossed the procedure in my case and Dr Fadzli agreed with the course that the public hospital is going. This was comforting to know.
I also asked about the gamma treatment. He also concurred that it was not suitable for me due to it's size. So this is the second blow to the procedure. He (I think) says that it shrinks it but that it may reoccur.
After some more exchanges we go because he had a meeting. I forgot to ask about anti convulsion medication. Oh well I get another scan on wednesday at the hospital so I will try there lah.
His PR is pretty good. A stark contrast to the receptionist and nurse who seems so disconnected and unfriendly. He greets us and ask about my symptoms and then do a physical checkup. Can I have a tune-up? He also mentioned that the right eye is slightly swollen due to the swelling in the brain pressing on the optic nerve.
We talk about my condition. I ask him about the seizures and he said yes it's possible but that it may also happen after the op. What? It's gonna be a permanent souvenir like the scar! That sucks soo bad. :(
He also explained the surgical procedure. But it was very short, basically open this take it out then the ENT cracks this and take that out. That's it. I know that but the crack part was new and it's the part with sthe mell nerve. I will have to ask Dr Cheang (my designated surgeon) about this. He did mention that it should not be difficult as the tumor is close to the front and won't be a deep excavation to get at it. This was reassurring.
Also during the consultation Dr Tinnesh came for something. Dr Fadzli asked him in and asked about my case. He asked if I knew him and I just said sure. But the wife said no this was not the guy we met at the hospital. I was in a blur. But I was surprised that there was a connection between the 2 hospitals. Dr Fadzli said that they have a relationship. I guess it's a small world for them. They quickly crossed the procedure in my case and Dr Fadzli agreed with the course that the public hospital is going. This was comforting to know.
I also asked about the gamma treatment. He also concurred that it was not suitable for me due to it's size. So this is the second blow to the procedure. He (I think) says that it shrinks it but that it may reoccur.
After some more exchanges we go because he had a meeting. I forgot to ask about anti convulsion medication. Oh well I get another scan on wednesday at the hospital so I will try there lah.
oh wizard from far far away, lend me your ears
Now I really need some advice about this gamma treatment. So I fire an email to Dr A overseas.
The bait is laid. Let's wait. Ring...ring... A bite! Man I love this guy. Takes the time to call me from overseas. Have to thank him personally when he comes in to KL.
I ask him whether the gamma treatment is suitable in my case. He says not really, it's good for intracranial tumors <3cm>3cm. It will shrink it but it may reoccur. Unless they can confidently say that they can do it. OK thanks Dr A.
The bait is laid. Let's wait. Ring...ring... A bite! Man I love this guy. Takes the time to call me from overseas. Have to thank him personally when he comes in to KL.
I ask him whether the gamma treatment is suitable in my case. He says not really, it's good for intracranial tumors <3cm>3cm. It will shrink it but it may reoccur. Unless they can confidently say that they can do it. OK thanks Dr A.
a spanner in the works
Mr O has a friend, datuk K. He has a friend in singapore working in the tumor field. He says wait a minute there is a technology called Gamma Knife treatment that may help.
So I look it up. Its a a machine where beams of low dose gamma rays intersects at 1 singular point. This point becomes 'hot' (not temperature hot but radioactive hot). The technology is appealling. No surgery, short 'operation' time, basically walk in shoot for @2 hours then out the door. I guess depending on where the tumor is the patient may have to be observed for a day. But no surgery required. No nerve damage if it is not shot at.
But we are talking about going to singapore. Then there is the 'after sales service' ie the follow ups. The logistics, exchange rate, etc. After all it is a semi private clinic? Know what that means.
We manage to ask the staff at the Neuro Clinic at the hospital about the gamma treatment. He says there's one at sunway. He says it used to cost $75K now its $150. What the.
The once smooth course is now hampered by this new 'opportunity'. But is it the bullet for me?
http://www.drprempillay.com
I have resigned myself to the 5th at Ipoh, unless there is some divine intervention to change my course. All the nuerosurgions I have consulted recommends surgery as soon as possible so I am not going to delay this date. The tumor is growing and my greatest fear is that it will spread to the eyes. This would mean the removal of the eye(s) because you won't be able to radio the bugger without damaging the eye(s).
I fire an email to Dr Prem asking him what procedure is most suitable for my condition. He says the scans that I have now is not 'clear' enough. I will need a 3 tesla MRI scan available at his clinic. Of course. Scanning is a good thing but man it seems these clinics are creating any excuses to get you to use it. And pay for it. Oh well I'm on a very tight budget. The Singapore project will only be viable to me if someone pays for it.
I fire another email requesting cost of treatment. We see what happens. If it is to happen it has to be soon because I don't want to cancel the 5th unless something absolutely concrete happens. The procrastinator is now getting anxious as the long 'free' time is getting shorter and surgery is just around the corner. I can't stop thinking about the movie Awake.
So I look it up. Its a a machine where beams of low dose gamma rays intersects at 1 singular point. This point becomes 'hot' (not temperature hot but radioactive hot). The technology is appealling. No surgery, short 'operation' time, basically walk in shoot for @2 hours then out the door. I guess depending on where the tumor is the patient may have to be observed for a day. But no surgery required. No nerve damage if it is not shot at.
But we are talking about going to singapore. Then there is the 'after sales service' ie the follow ups. The logistics, exchange rate, etc. After all it is a semi private clinic? Know what that means.
We manage to ask the staff at the Neuro Clinic at the hospital about the gamma treatment. He says there's one at sunway. He says it used to cost $75K now its $150. What the.
The once smooth course is now hampered by this new 'opportunity'. But is it the bullet for me?
http://www.drprempillay.com
I have resigned myself to the 5th at Ipoh, unless there is some divine intervention to change my course. All the nuerosurgions I have consulted recommends surgery as soon as possible so I am not going to delay this date. The tumor is growing and my greatest fear is that it will spread to the eyes. This would mean the removal of the eye(s) because you won't be able to radio the bugger without damaging the eye(s).
I fire an email to Dr Prem asking him what procedure is most suitable for my condition. He says the scans that I have now is not 'clear' enough. I will need a 3 tesla MRI scan available at his clinic. Of course. Scanning is a good thing but man it seems these clinics are creating any excuses to get you to use it. And pay for it. Oh well I'm on a very tight budget. The Singapore project will only be viable to me if someone pays for it.
I fire another email requesting cost of treatment. We see what happens. If it is to happen it has to be soon because I don't want to cancel the 5th unless something absolutely concrete happens. The procrastinator is now getting anxious as the long 'free' time is getting shorter and surgery is just around the corner. I can't stop thinking about the movie Awake.
sweets
On another note while I'm on steroids I better pump some weights, which is what I am doing. After all I'm practically perpetually hungry. I gained almost 10K so far. Also my theory is that when you excersise your body becomes damaged. That is the pain you feel when you have not worked out for some time. The body then heals itself and compensates for the type of excersise you did, ie for strength or stamina. You will notice that as you continue to excersise the pain disappears as the body becomes efficient at healing itself. In fact body builders work extra hard just to get that pain feeling again. So when I go to surgery the body should be at an efficient level to quickly heal from it. I just have to get fit to a level that will be the most optimal for recovery.
Not sure if it's the steroids or the tumor but my mouth tastes bitter. Just want sweets because I can slightly taste it. Bitter food becomes twice as bitter. Imagine plain water tastes like bile. Appetite but not the satisfaction of tasting it. Sucks.
Not sure if it's the steroids or the tumor but my mouth tastes bitter. Just want sweets because I can slightly taste it. Bitter food becomes twice as bitter. Imagine plain water tastes like bile. Appetite but not the satisfaction of tasting it. Sucks.
the grass is greener ...
On the topic of Australia I still have residency. I think I still have Medicare. Dr Avatar says go for it. The perception is that the quality of the treatment would be better. Unfortunately the dislocation would be too much for me. Imagine I will have to settle the visa for my wife and daughter. My son cannot travel for another year. So he will be left behind. The money and exchange rate, costs. We will stay in someone else's home, in unfamiliar surroundings (even though I have lived there) it will still be unfamiliar as a family unit. When thinking about this surgery I want to keep the stable parts familiar and the disruptive part as small as possible (ie the operation). I certainly don't need the stress. I might die of the stress of moving overseas before the stress of the tumor. Keep the disruption to a minimum to reduce the stress.
the wizard from far far away
Ring ring... Hello, Hi I'm A O's brother. Cool, I get more info.
Dr A tells me that it is a cancer, probably from the nose to the brain and that the nasal composition and brain tumor should be the same. I asked whether this is a short life long treatment scenario. He evaded the question cheeky bugger. He basically recommends surgery as the solution. Well It has to be removed. He said that it will be a combined neuro and ENT effort, @6-7 hours. But added that I will require cranial reconstruction as well. Huh? Doctor Avatar hinted that there will be some nose smashing required to get at the nasal tumor. Also my sense of smell will go. (Later this is because of them breaking some parts unfortunately containing the smell nerve.) Man imagine no longer having the satisfaction and enjoyment of smelling your own fart. The smell of the world will be gone? 'A' says that it is a minor thing, huh, this worries me. Is there more complicated things? Side effects? I also ask if I could drive. He says there is a 5-10% chance of seizures. So no driving. Man that sucks. Driving is lifes greatest freedoms. I thank him lots and hang up. I hope he had one of those cheap overseas call things that is so numerous in Australia.
Dr A tells me that it is a cancer, probably from the nose to the brain and that the nasal composition and brain tumor should be the same. I asked whether this is a short life long treatment scenario. He evaded the question cheeky bugger. He basically recommends surgery as the solution. Well It has to be removed. He said that it will be a combined neuro and ENT effort, @6-7 hours. But added that I will require cranial reconstruction as well. Huh? Doctor Avatar hinted that there will be some nose smashing required to get at the nasal tumor. Also my sense of smell will go. (Later this is because of them breaking some parts unfortunately containing the smell nerve.) Man imagine no longer having the satisfaction and enjoyment of smelling your own fart. The smell of the world will be gone? 'A' says that it is a minor thing, huh, this worries me. Is there more complicated things? Side effects? I also ask if I could drive. He says there is a 5-10% chance of seizures. So no driving. Man that sucks. Driving is lifes greatest freedoms. I thank him lots and hang up. I hope he had one of those cheap overseas call things that is so numerous in Australia.
the wizard of oz 2
Dr Tinnesh I presume?
We were expecting Dr Tinnesh the door says Tinnesh so I assume he is Tinnesh (little did I know later it was not Tinnesh :) ) Anyways we see this guy and go over my symptoms. Not really much to describe as we brought our scans and we know it's a brain tumor. Now in hindsight they had never seen my scan but he was already talking about surgery. And booked me for the 5th of feb. I can't recall whether they took my scans and made an assessment when we came in. Maybe. Well that's it, it's going to be a brain operation. 5Th of Feb ... heh heh ... no worries, still a long ways away.
For the procrastinator this is like a long time with time to spare.
I felt like a factory item, walk in, short story, and out the door with some pills. Good pills. Steroids, memory enhancer and antacid. Man the steroids are good for physical reasons. Imagine eating pretty much non stop :) all day. Then the memory enhancer piracetam is supposed to enhance cognition and memory and more. See wikipedia on it. I think I'll try to wangle this thing even after surgery. The steroids would be too much to ask for after surgery :( .
The orderly suggests we get a second opinion. After all it is a major operation. He recommends a few (2 actually) but Dato' Dr Fadzli was the name that stuck. After all a Dato' must have achieved something, hopefully in his field not due to politics. Don't want a politician operating on me they might change my mind.
So we go to KPJ Ipoh to make an appointment with Dato' Dr Hj Fadzli Cheah. The customer service dude Ariffin was a very eager beaver. He was going on saying that the doctor was around just wait he should come around. I was reluctant as I had not prepared any questions. So eventually we settled for a next day appointment. Man another long drive. But we get a second opinion from a $50K doctor.
We were expecting Dr Tinnesh the door says Tinnesh so I assume he is Tinnesh (little did I know later it was not Tinnesh :) ) Anyways we see this guy and go over my symptoms. Not really much to describe as we brought our scans and we know it's a brain tumor. Now in hindsight they had never seen my scan but he was already talking about surgery. And booked me for the 5th of feb. I can't recall whether they took my scans and made an assessment when we came in. Maybe. Well that's it, it's going to be a brain operation. 5Th of Feb ... heh heh ... no worries, still a long ways away.
For the procrastinator this is like a long time with time to spare.
I felt like a factory item, walk in, short story, and out the door with some pills. Good pills. Steroids, memory enhancer and antacid. Man the steroids are good for physical reasons. Imagine eating pretty much non stop :) all day. Then the memory enhancer piracetam is supposed to enhance cognition and memory and more. See wikipedia on it. I think I'll try to wangle this thing even after surgery. The steroids would be too much to ask for after surgery :( .
The orderly suggests we get a second opinion. After all it is a major operation. He recommends a few (2 actually) but Dato' Dr Fadzli was the name that stuck. After all a Dato' must have achieved something, hopefully in his field not due to politics. Don't want a politician operating on me they might change my mind.
So we go to KPJ Ipoh to make an appointment with Dato' Dr Hj Fadzli Cheah. The customer service dude Ariffin was a very eager beaver. He was going on saying that the doctor was around just wait he should come around. I was reluctant as I had not prepared any questions. So eventually we settled for a next day appointment. Man another long drive. But we get a second opinion from a $50K doctor.
munchkins are like wizards too
So the much anticipated moment has arrived at the ENT to see the results of the biopsy results. It was my birthday coincidently. I was hoping for some good news. Alas I was told I had a growth considered level 4. I asked is there a level 5? Like a car can I have reverse? It was not to be. Apparently level 4 is very serious. Actually I can't remember what it was meant to mean. It didn't matter really. To me it was not a lymphoma, or a benign growth, it was the other. I just hope it's not a long stoy short life affair.
Looking at the biopsy report the words carcinoma and malignant were the words that stood out. The combination of the 2 is not good ie malignant cancer.
It was bad news alright. Dr Ali couldn't do any more and Dr Avatar expresses his sadness at giving bad news. He then disappears but later comes back saying that a surgical procedure was not recommended. That it may have a high morbidity incidence. He suggests chemo and radio as the solution. However he made an appointment with the neurosurgion clinic at Ipoh a Dr Tinnesh.
Looking at the biopsy report the words carcinoma and malignant were the words that stood out. The combination of the 2 is not good ie malignant cancer.
It was bad news alright. Dr Ali couldn't do any more and Dr Avatar expresses his sadness at giving bad news. He then disappears but later comes back saying that a surgical procedure was not recommended. That it may have a high morbidity incidence. He suggests chemo and radio as the solution. However he made an appointment with the neurosurgion clinic at Ipoh a Dr Tinnesh.
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