I read this presentation by Adam Bosworth, (VP, Google) about Connecting Americans to their health care here. He speaks about the areas in healthcare which are badly in need of innovation. He mentions that there is no place individuals can go to get a comprehensive set of health and medical information about themselves. Access to this comprehensive information can be vital to proper and timely diagnosis of the patient, to the patient getting the best possible treatment, and, perhaps sometimes overlooked, to the patient getting the best possible ongoing care and support after the initial treatment, especially for chronic illnesses.
We experienced some parts of this during this last one and half years. The diagnosis got delayed for reasons like medical records moving from one doc to another, incomplete records, etc. We are still experiencing this, to get a diagnosis for my dizziness. More than once, I had to schedule/reschedule appointments a week later than available. I started keeping a personal copy of all my visits and tests and when the reports were delayed at the hospital, i had my own history in my brain.
The presentation as mentioned above covers a lot of such issues which need some solutions. I am sure no one wants to stay in pain longer just because some report did not make it to the doc.
Tuesday, December 26, 2006
Friday, December 22, 2006
Ahh Vertigo!
So my PCP figured that the dizziness I am experiencing, since the last 2 weeks is probably Benign positional vertigo . No causes found yet. But I can get some physical therapy to get rid of it, Yey!!. I am tired of feeling the dizziness/vertigo. I have to still live with it till i get to physical therapy in another 5-6 days or more coz of the holidays.
Patience my dear! patience!! :)).
Happy holidays and a Merry Christmas to everyone!!
Patience my dear! patience!! :)).
Happy holidays and a Merry Christmas to everyone!!
Thursday, December 21, 2006
Part 2 - the Surgery and after!
The surgery(craineotomy to remove the tumor) : (Not so much for the faint hearted)
I did not cover my brain surgery details and the hospital stay in any posts and the recap, so here it is. This post has been in draft state since a week now.
We had the surgery on Nov 14 at Harborview. We checked in at about 6:10 am. It was a wierd numb feeling i had that morning. I had thought that I would be super anxious and would be freaking out and someone would have to sedate me to even take me to the hospital :). Guess what, I went to the anesthetic station by myself and got the iv and stuff. Vivek and mom joined me there after a while. They also asked me if i needed some sedatives to get to the OT and i decided to just walk there instead. I remember just the first 2 minutes in the OT of course. My surgery took about 6.5 hours and some 2-3 hours to get me ready for the ICU. I am sure everyone outside had a difficult time trying to get through those 8-9 hours. They removed the orbital bone above the right eye to get to the tumor and put some titanium plates in there. I was moved to the ICU after the surgery and i dont remember too much from 14th. I do remember some talking i did with people i couldn't clearly see:) my face was swollen and right eye was glued shut. The left eye opened a little and had orientation problems. The next day was nicer and we also moved to the step-down-icu on 15th evening.
The stepdown ICU was a semi-private room. The first day there was also a very sedated day, with tons of vital checks and some talking. The night there was entertaining too. The other patient in the room probably had had an accident and did not remember stuff. She would come in asking for a couple of dollars for some beer. Even at night, she would come and wake me up and ask for some dollars. I fell sorry for her but in my half sedated and pained state, i got really scared of her. Its good that Vivek was there, but poor thing did not sleep the whole night, so that i could rest.
The next day was better as we got a new roommate. I was more awake and atleast remember that i had a number of visitors:).
Some nasty stuff happened during these 2 days though. If you are going to have any surgery, then dont read this paragraph:). One day they took out or rather just pulled out a drain from brain. Man, that hurt like crazy. They just pulled it out from the stich area along with some hair of mine. I dont know what hurt worse, the drain coming out from somewhere in the brain or the hair being pulled out. The resident doc who did it wouldnt tell me his name after that :). The next day they removed the lumbar puncture which is like another drain from the spine. The removal was all fine, but there was now a small hole in the skin over the spine which needed to be closed. And that takes 3-4 stiches. apparently, to the numb the area also needs 4 needle pricks. So hey, either ways 4 pricks. So they did those stiches without the numbing. That hurt too :(. But the doc was nice and quick. Then that night the nurse wouldnt let vivek stay the night, some random reasons as usual. I freaked out after the previous nights experience so finally he managed to convince the nurses to let him be there.
The next 4 days were in the general ward. We had a private room. Of course, the vitals check every 3-4 hours continued. So the nurse would wake me in the night and check my vitals and ask me some questions to evaluate my mental state. It can get a little irritating sometimes when you just went to sleep and suddenly the light is put on, a cold temperature device is put in your ear and you get pricked to check the glucose level :), and also asked to answer questions. I remember one such question for which i just stared back at her. She asked me who the governor of washinton was. :) after a couple of seconds, i asked her if i could tell her who the governor of california was. She smiled and said everything looks fine. The midnight CT scans, on/off pain graph, tons of medications, walks on the floor made up the rest of the days.
We came home on 20th and i remember the drive back was nasty. I couldnt take any of the movements of the car without getting a little nausea, so i had vivek drive at 5 mph. We finally got home and i think the next 2 days were in pain probably just because of the change from hospital to home. After that, it has been a graph of ups and downs and gradual recovery. I hope it continues this way and i can soon start jumping around.
I did not cover my brain surgery details and the hospital stay in any posts and the recap, so here it is. This post has been in draft state since a week now.
We had the surgery on Nov 14 at Harborview. We checked in at about 6:10 am. It was a wierd numb feeling i had that morning. I had thought that I would be super anxious and would be freaking out and someone would have to sedate me to even take me to the hospital :). Guess what, I went to the anesthetic station by myself and got the iv and stuff. Vivek and mom joined me there after a while. They also asked me if i needed some sedatives to get to the OT and i decided to just walk there instead. I remember just the first 2 minutes in the OT of course. My surgery took about 6.5 hours and some 2-3 hours to get me ready for the ICU. I am sure everyone outside had a difficult time trying to get through those 8-9 hours. They removed the orbital bone above the right eye to get to the tumor and put some titanium plates in there. I was moved to the ICU after the surgery and i dont remember too much from 14th. I do remember some talking i did with people i couldn't clearly see:) my face was swollen and right eye was glued shut. The left eye opened a little and had orientation problems. The next day was nicer and we also moved to the step-down-icu on 15th evening.
The stepdown ICU was a semi-private room. The first day there was also a very sedated day, with tons of vital checks and some talking. The night there was entertaining too. The other patient in the room probably had had an accident and did not remember stuff. She would come in asking for a couple of dollars for some beer. Even at night, she would come and wake me up and ask for some dollars. I fell sorry for her but in my half sedated and pained state, i got really scared of her. Its good that Vivek was there, but poor thing did not sleep the whole night, so that i could rest.
The next day was better as we got a new roommate. I was more awake and atleast remember that i had a number of visitors:).
Some nasty stuff happened during these 2 days though. If you are going to have any surgery, then dont read this paragraph:). One day they took out or rather just pulled out a drain from brain. Man, that hurt like crazy. They just pulled it out from the stich area along with some hair of mine. I dont know what hurt worse, the drain coming out from somewhere in the brain or the hair being pulled out. The resident doc who did it wouldnt tell me his name after that :). The next day they removed the lumbar puncture which is like another drain from the spine. The removal was all fine, but there was now a small hole in the skin over the spine which needed to be closed. And that takes 3-4 stiches. apparently, to the numb the area also needs 4 needle pricks. So hey, either ways 4 pricks. So they did those stiches without the numbing. That hurt too :(. But the doc was nice and quick. Then that night the nurse wouldnt let vivek stay the night, some random reasons as usual. I freaked out after the previous nights experience so finally he managed to convince the nurses to let him be there.
The next 4 days were in the general ward. We had a private room. Of course, the vitals check every 3-4 hours continued. So the nurse would wake me in the night and check my vitals and ask me some questions to evaluate my mental state. It can get a little irritating sometimes when you just went to sleep and suddenly the light is put on, a cold temperature device is put in your ear and you get pricked to check the glucose level :), and also asked to answer questions. I remember one such question for which i just stared back at her. She asked me who the governor of washinton was. :) after a couple of seconds, i asked her if i could tell her who the governor of california was. She smiled and said everything looks fine. The midnight CT scans, on/off pain graph, tons of medications, walks on the floor made up the rest of the days.
We came home on 20th and i remember the drive back was nasty. I couldnt take any of the movements of the car without getting a little nausea, so i had vivek drive at 5 mph. We finally got home and i think the next 2 days were in pain probably just because of the change from hospital to home. After that, it has been a graph of ups and downs and gradual recovery. I hope it continues this way and i can soon start jumping around.
Tuesday, December 12, 2006
Recovery Update
My right eye now opens up about three-fourths of the normal. It fluctuates between half and 3/4th. So still some more time to go. The numbness on the forehead is slowly going away and I can actually move my eyebrows. My appetite is back, so i am gobbling up every 2-3 hours. My energy levels also fluctuate. On good days i can take upto 3-4 hours of driving( viveks driving:)) some walking outside, half an hour in the kitchen etc. Online time is still restricted to about an hour a day because the right eye interferes with what i see now. To read for longer hours, I need to wear an eye patch:)
I had a spell of dizzyness for 3-4 days this week, went to the ER and got some tests and finally no one knew why i was getting dizzy. We are trying to treat all possible things from low BP to some random infections and it seems to be working. The dizzyness is better today. I hope it remains that day coz dizzyness is verryyyy irritating and sometimes scary.
I had a spell of dizzyness for 3-4 days this week, went to the ER and got some tests and finally no one knew why i was getting dizzy. We are trying to treat all possible things from low BP to some random infections and it seems to be working. The dizzyness is better today. I hope it remains that day coz dizzyness is verryyyy irritating and sometimes scary.
Sunday, December 03, 2006
Recap - Part 1
Recap of how we found out about the tumor, the timeline of things and the surgery:
(Since all the information is distributed in the earlier blogs)
I started feeling that my right eye was seeing a less contrast version of things and was a little blurry since the last 2 months. I went to my optometrist sometime in september and because of his lack of action and seriousness about the issue, I finally went to a General practitioner at Virginia Mason. After a ton of pro-active pushing by me, my optometrist got me an appointment with some eye surgeon a month later!. huh!. I took copies of my eye test results from the optometrist and sent them to my ophthalmologitst in Nagpur(my home town in India). My ophthalmologist advised me to go see a neurologist immediately. After this information i had to take things in my own hand and hence saw the General practitioner, since usually you can't see a neurologist without a referral. The GP got me to see an ophthalmologist immediately and got some tests done. The ophthalmologist at VM did some 4 hours of tests to eliminate all problems wih the eye and finally concluded that there was something outside the eye which was pushing on the right optic nerve. So there i am sent for an mri.
We had a bad experience with the closed mri, so we decided to have an open one. We got those results on 12th Oct. My GP called up and told me that I have an appointment sceduled with a neurosurgeon on Monday, 16th and that i should start on steroids to reduce the inflammation around the mass in my head. Ofcourse I started off with questions but he told me that i will get answers only from the neurosurgeon. So we had to wait till monday. But anyway it was kinda clear that there is something in the brain. That evening was probably the only evening i felt bad and vivek and me both just sat there and hugging each other. It passed in a couple of minutes.
The next day it was viveks surprise birthday party, which i had already planned earlier, in the night. We stayed home and did random shopping and had a great party in the night. That helped with taking our minds off of the serious stuff.
We got the radiologists written report on saturday and we tried to understand it. It was an amazing report, coz we couldnt understand every 3rd word in it. After some googling and reading the report some number of times, it got clear that most probably it was a meningioma, which is usually benign. There were some other options too, but in either case it basically was some kind of a tumor. I think I wasn't shocked by that since somehow internally I had already accepted it.
On 16th, we met with our neurosurgeon at VM. He was a really nice doc and he explained a lot of the details which helped us understand and make the right decisions about the surgery. At that time of course we thought that this is just too much information which is just meant to scare us :)
After this for a day or two we were kinda lost on what to do, so we started talking to some people who have undergone similar surgeries. We realized the need for research and search for the right neuro-surgeon.
We met 3 neurosurgeons and decided on Dr Sekhar. He was very confident and positive about saving my right eye. I think he was the most confident among all about the surgery in general and about saving everything around the tumor. You can read here about the complexity of the surgery.
(Since all the information is distributed in the earlier blogs)
I started feeling that my right eye was seeing a less contrast version of things and was a little blurry since the last 2 months. I went to my optometrist sometime in september and because of his lack of action and seriousness about the issue, I finally went to a General practitioner at Virginia Mason. After a ton of pro-active pushing by me, my optometrist got me an appointment with some eye surgeon a month later!. huh!. I took copies of my eye test results from the optometrist and sent them to my ophthalmologitst in Nagpur(my home town in India). My ophthalmologist advised me to go see a neurologist immediately. After this information i had to take things in my own hand and hence saw the General practitioner, since usually you can't see a neurologist without a referral. The GP got me to see an ophthalmologist immediately and got some tests done. The ophthalmologist at VM did some 4 hours of tests to eliminate all problems wih the eye and finally concluded that there was something outside the eye which was pushing on the right optic nerve. So there i am sent for an mri.
We had a bad experience with the closed mri, so we decided to have an open one. We got those results on 12th Oct. My GP called up and told me that I have an appointment sceduled with a neurosurgeon on Monday, 16th and that i should start on steroids to reduce the inflammation around the mass in my head. Ofcourse I started off with questions but he told me that i will get answers only from the neurosurgeon. So we had to wait till monday. But anyway it was kinda clear that there is something in the brain. That evening was probably the only evening i felt bad and vivek and me both just sat there and hugging each other. It passed in a couple of minutes.
The next day it was viveks surprise birthday party, which i had already planned earlier, in the night. We stayed home and did random shopping and had a great party in the night. That helped with taking our minds off of the serious stuff.
We got the radiologists written report on saturday and we tried to understand it. It was an amazing report, coz we couldnt understand every 3rd word in it. After some googling and reading the report some number of times, it got clear that most probably it was a meningioma, which is usually benign. There were some other options too, but in either case it basically was some kind of a tumor. I think I wasn't shocked by that since somehow internally I had already accepted it.
On 16th, we met with our neurosurgeon at VM. He was a really nice doc and he explained a lot of the details which helped us understand and make the right decisions about the surgery. At that time of course we thought that this is just too much information which is just meant to scare us :)
After this for a day or two we were kinda lost on what to do, so we started talking to some people who have undergone similar surgeries. We realized the need for research and search for the right neuro-surgeon.
We met 3 neurosurgeons and decided on Dr Sekhar. He was very confident and positive about saving my right eye. I think he was the most confident among all about the surgery in general and about saving everything around the tumor. You can read here about the complexity of the surgery.
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