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.
Monday, November 27, 2006
Snow!!
It is snowing outside and it is so beautiful. It is also amazingly cold and i am not supposed to stay out for long, but it is so beautiful! We went out and spent some 5 minutes going crazy with the snow! The snow is floating away and i can see all of this from my balcony. It is amazing. Seattle downtown covered in snow!!!.
I got a haircut the other day and now i have super short hair. I was having trouble getting my original hair to settle down after the surgery coz they were all matted with blood and all a mess, so i just decided to cut them off and grow all back together. Of course the short do feels good and everyone seems to like it, it is definitely better than the wierd messy half bald look. Soon it will grow back to a length i like. If i go out right now, i will look like i got a snow crew cut or something!!:)
Snow on the grass, snow on the road, snow on the cars, snow floating away.. snow, snow, snow!!!
I got a haircut the other day and now i have super short hair. I was having trouble getting my original hair to settle down after the surgery coz they were all matted with blood and all a mess, so i just decided to cut them off and grow all back together. Of course the short do feels good and everyone seems to like it, it is definitely better than the wierd messy half bald look. Soon it will grow back to a length i like. If i go out right now, i will look like i got a snow crew cut or something!!:)
Snow on the grass, snow on the road, snow on the cars, snow floating away.. snow, snow, snow!!!
Thursday, November 23, 2006
At home recovery!
We got discharged on nov 20th and are now settling in the home routine. People say that the surgery is the most difficult part and the rest is easier. I think the surgery is definitely the difficult part, but for the docs, and the recovery is the difficult part for the patient. :) I was knocked out for the complete surgery and some more hours after that, so that did not need any patience and work. The recovery on the other hand is going to be super slow and will need a lot of patience.
Recap of why i needed to have this tumor resection surgery on nov 14: http://offspaces.blogspot.com/2006/10/so-i-think-i-have-tumor.html
The surgery went fine and as everyone else around tells me, all off my tumor got removed, no wierd things happened, like no leaks and no damage to the things.. touch wood. I could get up and sit on the third day after the surgery and walk a couple of steps on the fourth day. Of course i was yapping away immediately after i got out of the anesthesia on 14th itself. My left eye started to focus after some orientation problems on the third day. So every day is like a new day to learn some new things like a kid discovering new senses. My right eye is still a little swollen and is not open. It has started opening a litle today, but i see double when i use both the eyes:). I am hoping this is also go away in a couple of days. I am still learning to balance in different ways everyday. Still a long way to go.
I will be home recovering for another 4-6 weeks with regular appointments with docs in between. I am already getting totally pampered by mom and vivek. They are so amazingly patient with me and are always there to fulfill all my requests:).
The hospital stay was fun too!. I hated the hospital food, so all my friends set up a schedule to get me some great food everyday. All the nurses envied our room since it always smelt like an indian restaurant. I think all the good food helped with my recovery and quick discharge. Thanks to all you guys for keeping up with my demands everyday and providing such a great support structure for vivek and mom in the hospital.
And a huge hug and thanks to Vivek and Mom too for everything they are going through for this spoilt kid!. I love you two so much!.
Thank you God , please keep your hand on us all the time!!.
Thanks to everyone else for all their prayers and wishes through the surgery. Keep them coming for my quick recovery. I want to be running, driving, cooking, working asap!!.
Recap of why i needed to have this tumor resection surgery on nov 14: http://offspaces.blogspot.com/2006/10/so-i-think-i-have-tumor.html
The surgery went fine and as everyone else around tells me, all off my tumor got removed, no wierd things happened, like no leaks and no damage to the things.. touch wood. I could get up and sit on the third day after the surgery and walk a couple of steps on the fourth day. Of course i was yapping away immediately after i got out of the anesthesia on 14th itself. My left eye started to focus after some orientation problems on the third day. So every day is like a new day to learn some new things like a kid discovering new senses. My right eye is still a little swollen and is not open. It has started opening a litle today, but i see double when i use both the eyes:). I am hoping this is also go away in a couple of days. I am still learning to balance in different ways everyday. Still a long way to go.
I will be home recovering for another 4-6 weeks with regular appointments with docs in between. I am already getting totally pampered by mom and vivek. They are so amazingly patient with me and are always there to fulfill all my requests:).
The hospital stay was fun too!. I hated the hospital food, so all my friends set up a schedule to get me some great food everyday. All the nurses envied our room since it always smelt like an indian restaurant. I think all the good food helped with my recovery and quick discharge. Thanks to all you guys for keeping up with my demands everyday and providing such a great support structure for vivek and mom in the hospital.
And a huge hug and thanks to Vivek and Mom too for everything they are going through for this spoilt kid!. I love you two so much!.
Thank you God , please keep your hand on us all the time!!.
Thanks to everyone else for all their prayers and wishes through the surgery. Keep them coming for my quick recovery. I want to be running, driving, cooking, working asap!!.
Monday, November 13, 2006
Calendar, directions
Saturday, November 11, 2006
Contact details
We are available on email-ids at gargvivek and richahingle, both at gmail. Vivek will be updating the blog during the surgery week, then I will take over again.
HarborView Medical Hospital: Map
Visiting hours for ICU: 10 a.m to 8 pm
General Ward visiting hours are probably the same. I will update the blog if otherwise.
I will be in ICU on 14th, 15th and in general ward for 3-4 days after that. All the dates are tentative depending on the recovery.
HarborView Medical Hospital: Map
Visiting hours for ICU: 10 a.m to 8 pm
General Ward visiting hours are probably the same. I will update the blog if otherwise.
I will be in ICU on 14th, 15th and in general ward for 3-4 days after that. All the dates are tentative depending on the recovery.
Friday, November 10, 2006
Seattle Darshan and movies!
The past few days have been a mix of some tests, lots of seattle touring, lots of movies and lots of great food. Mom has only one aim right now, and that is to feed me and feed me and make me nice and healthy (which feels like it will soon push me into the overweight section, but hopefully all the extra stuff will get used during recovery :) ). Vivek is also feeling the side effect of all the good food ;). I have been doing my part of taking her around seattle inspite of the rain. We have covered snoqualmie falls, eastside, redmond campus, international district, myrtle edwards park, kirkland waterfront and some other small things. We are planning some longer trips for the weekend which will be the last weekend we get to go out, before the surgery immobilizes me for about 3-4 weeks!.
I was trying to think of things i want to do after the surgery and even later and somehow I cannot think that far. I guess I have to clear this big event before things get back in control and my thoughts get aligned. The anxiety levels will soon start to get higher with the D-day coming up. But vivek and mom are really helping a lot. I love you both for being here and entertaining this naughty brat. Oh yeah I have been very very naughty and I am usually a brat coz i can afford to be one right now:)
A new thing I learnt about us engineers is that, we are usually so in control and independent type of people, that an event like this which needs us to let go of all control becomes really difficult to handle. My anesthesia nurse told me this, that the most trouble she has is with engineers, so let go and trust all the people around you:).
Vivek will soon be putting up a calendar for all the volunteers to help out during our hospital stay. I will be keeping Vivek at my side 24/7, so we definitely will need help to drive people and deliver food sometimes etc.
Please do pray for my quick recovery!. Of course, I will love tons of visitors once i am in my senses after the surgery, so please dont hesitate to drop by!. As you must have noticed by now, i love all the extra attention !!:)
I was trying to think of things i want to do after the surgery and even later and somehow I cannot think that far. I guess I have to clear this big event before things get back in control and my thoughts get aligned. The anxiety levels will soon start to get higher with the D-day coming up. But vivek and mom are really helping a lot. I love you both for being here and entertaining this naughty brat. Oh yeah I have been very very naughty and I am usually a brat coz i can afford to be one right now:)
A new thing I learnt about us engineers is that, we are usually so in control and independent type of people, that an event like this which needs us to let go of all control becomes really difficult to handle. My anesthesia nurse told me this, that the most trouble she has is with engineers, so let go and trust all the people around you:).
Vivek will soon be putting up a calendar for all the volunteers to help out during our hospital stay. I will be keeping Vivek at my side 24/7, so we definitely will need help to drive people and deliver food sometimes etc.
Please do pray for my quick recovery!. Of course, I will love tons of visitors once i am in my senses after the surgery, so please dont hesitate to drop by!. As you must have noticed by now, i love all the extra attention !!:)
Tuesday, October 31, 2006
Surgery Details
So it looks like I will have my surgery on Nov 14th. Some background on how this got decided.
We met Dr Sekhar last Saturday and he was very confident and positive about saving my right eye. After getting another opinion , we decided to stick with Dr Sekhar. He is Professor and Vice Chairman at UW and practices at HarborView.
Some more tests to go and then things will be ready for the surgery. I will be at HarborView for about a week. Will update with the details once I get them. The surgery will include a craneotomy with the right orbital bone above the eye till some inches behind the hairline will be removed and then the tumor will be resected. I will mostly get a titanium plate after that.
I will be on steroids soon to prep for the surgery, so i will now have more energy during the day. People also adviced me to have a lot of fun and be active, so I am making some plans for moms seattle tour!!
I will be checking email and this blog till 13th. I will be in ICU probably for 2 days and then in the general ward for another 3-4 days. My cell will be with mom during that time.
Friday, October 27, 2006
Angiogram and the sedatives reaction!
So we had our final set of tests on 25th. We were scheduled for the following tests
-Angiogram: to find out the blood circulation in the brain to help with the surgery, since the tumor is pushing on one of the main arteries.
-MRI: thinner cut mri to get a better idea of position and location of the tumor with respect to the arteries.
-CT scan: to evaluate any damage to soft tissue and bones.
All tests came out positive according to the doc. ie. the blood circulation by the other arteries in the brain is good, there is no damage to the soft tissue and it seems like the tumor has not started to feed on the artery yet.
These facts of course make the tumor a little easier to extract, but also tells us that it will still be slightly complex because of the location ie.
- pushing the right optic nerve and the chiasm,
- sitting very close to the pituitary gland,
- pushing on the carotid artery.
We also met with our neurologist and got some more referrals for the best neurosurgeons in the area for meningioma surgeries. We also spoke to a oncologist for radiation options. We have some more appointments scheduled within the next 3-4 days and hopefully after those we will be able to fix the surgery date.
Oh, i forgot to write up about the whole hospitalization experience with these tests. So I had to get these tests done under conscious sedation, which is a level lower than general anaesthesia in the sense, that you are just sleepy and can support your breathing etc, but you mostly dont remember whats going on.
So they took me to the radiology floor. And i dont know which idiot designed it. It was this compact no window floor which was extremely claustrophobic. And the mri machines which look like this http://brainimaging.waisman.wisc.edu/images/MRI.jpg, are usually placed in a really compact and dimly lit room. Not a friendly place for claustrophobics. So of course i was super anxious. But the meds worked like a charm. They gave me tons of the sedation meds because
a. i was so anxious
b. they dont have any history on me about what my capacity for the meds is.
The tests went fine( Vivek will tell you otherwise, that i was shouting at everyone even in that slumber most of the time ;)), but i dont remember a thing!!:) But as my luck with meds these days is, i had a reaction to the sedatives.. hehe. i puked a ton of times on Vivek and Nishant in the evening and night. So i had to stay in the hospital till i could take in some food. After 24 hours of no food, i finally took some in the next day and slowly things got back to normal and we got home at about 4 pm. It is amazing how the most trouble i have had is with the meds(previous 24 hour sleep post) and the tests(the first mri also gave me a day long headache, and now these tests). The tumor has had the least effect on my health and overall life.
Thanks to nishant who was there to help vivek out with the some trips for food and stuff, since we were so not prepared for the hospitalization. That got me thinking about the surgery and how we will need people to drive mom around or do some small errands since vivek will be stuck with me and will be mentally exhausted. I think Vivek will send out some requests once the surgery date is set to decide on helpers for each day! Moms gonna be her ein 5 days! Yey!!!
-Angiogram: to find out the blood circulation in the brain to help with the surgery, since the tumor is pushing on one of the main arteries.
-MRI: thinner cut mri to get a better idea of position and location of the tumor with respect to the arteries.
-CT scan: to evaluate any damage to soft tissue and bones.
All tests came out positive according to the doc. ie. the blood circulation by the other arteries in the brain is good, there is no damage to the soft tissue and it seems like the tumor has not started to feed on the artery yet.
These facts of course make the tumor a little easier to extract, but also tells us that it will still be slightly complex because of the location ie.
- pushing the right optic nerve and the chiasm,
- sitting very close to the pituitary gland,
- pushing on the carotid artery.
We also met with our neurologist and got some more referrals for the best neurosurgeons in the area for meningioma surgeries. We also spoke to a oncologist for radiation options. We have some more appointments scheduled within the next 3-4 days and hopefully after those we will be able to fix the surgery date.
Oh, i forgot to write up about the whole hospitalization experience with these tests. So I had to get these tests done under conscious sedation, which is a level lower than general anaesthesia in the sense, that you are just sleepy and can support your breathing etc, but you mostly dont remember whats going on.
So they took me to the radiology floor. And i dont know which idiot designed it. It was this compact no window floor which was extremely claustrophobic. And the mri machines which look like this http://brainimaging.waisman.wisc.edu/images/MRI.jpg, are usually placed in a really compact and dimly lit room. Not a friendly place for claustrophobics. So of course i was super anxious. But the meds worked like a charm. They gave me tons of the sedation meds because
a. i was so anxious
b. they dont have any history on me about what my capacity for the meds is.
The tests went fine( Vivek will tell you otherwise, that i was shouting at everyone even in that slumber most of the time ;)), but i dont remember a thing!!:) But as my luck with meds these days is, i had a reaction to the sedatives.. hehe. i puked a ton of times on Vivek and Nishant in the evening and night. So i had to stay in the hospital till i could take in some food. After 24 hours of no food, i finally took some in the next day and slowly things got back to normal and we got home at about 4 pm. It is amazing how the most trouble i have had is with the meds(previous 24 hour sleep post) and the tests(the first mri also gave me a day long headache, and now these tests). The tumor has had the least effect on my health and overall life.
Thanks to nishant who was there to help vivek out with the some trips for food and stuff, since we were so not prepared for the hospitalization. That got me thinking about the surgery and how we will need people to drive mom around or do some small errands since vivek will be stuck with me and will be mentally exhausted. I think Vivek will send out some requests once the surgery date is set to decide on helpers for each day! Moms gonna be her ein 5 days! Yey!!!
Tuesday, October 24, 2006
Too much reading!
I have been reading a lot and researching to find some doc names and recommendations since the last week. I have 4-5 names out of which 2 are head of department surgeons, who work only the most complicated cases, so they just might not see me.
I think i am just going to stop this now. It seems like it will be a while before everything falls into place. I have some tests on 25th and appointments on 27th and 30th. So back to usual life and work and other plans.
My moms going to be here on Nov 1st. Yey!! i am excited about all the good food!!. Tomorrow I will work on a list of things I want her to get :) and will plan my vacation with her before the surgery!
I think i am just going to stop this now. It seems like it will be a while before everything falls into place. I have some tests on 25th and appointments on 27th and 30th. So back to usual life and work and other plans.
My moms going to be here on Nov 1st. Yey!! i am excited about all the good food!!. Tomorrow I will work on a list of things I want her to get :) and will plan my vacation with her before the surgery!
Sunday, October 22, 2006
Neuro-surgeon search continues!
I dont understand why docs can never explain why u have certain things. For example, they still cant explain my headaches. They say that it might be cozz of the tumor( duh) but the tumor is not big enough to cause the headaches, heh.
In any case, the search for the neurosurgeon continues. Slowly i am coming up a list of questions to ask the docs so that i can find one i am confortable with. That and some work to keep me busy.
Somedays the anxiety does take over and i feel lost about things to plan about, but i am am trying to not let this small occurrence take over my life completely for the next 2 months.
The weekend was fun with bday party on thursday and then diwali celebrations on Saturday. We finally cleaned a good part of the house. We also made some rangoli at deepa's place and did the pooja and nice dinner!.
Heres to good times and good health!
Thursday, October 19, 2006
Cell phones and tumors!
With all the discussions and talks which come with such incidences in life, we have also been discussing the number of occurrences of tumors in young people lately. One of my cousins came up with the theory about cell-phones.
Our generation is cell addict and we spend hours burning up the brain. Can that have something to do with the high frequency of occurrences of tumors in this generation? Something to think about?
Our generation is cell addict and we spend hours burning up the brain. Can that have something to do with the high frequency of occurrences of tumors in this generation? Something to think about?
Wednesday, October 18, 2006
Neuro-surgeon research!
So the day starts again!! Some phone calls home and some realization that tons of research needs to be done. I am finally off of steroids.. so the energy has gone down!:(.. but it will soon be up..
Its my Birthday tomorrow. I know i am kinda making a big propaganda out of it.. :) Of course, I should. I want a nice big party, lots of gifts, lots of surprises!! I can see Vivek getting worried about this ;)
But who knows, there are always these worst case scenarios with Brain surgery.. so better be ready and have all the fun! Party on the weekend!!
Back to research now. Please do leave me pointers for researching on great neurosurgeons in Seattle.
Its my Birthday tomorrow. I know i am kinda making a big propaganda out of it.. :) Of course, I should. I want a nice big party, lots of gifts, lots of surprises!! I can see Vivek getting worried about this ;)
But who knows, there are always these worst case scenarios with Brain surgery.. so better be ready and have all the fun! Party on the weekend!!
Back to research now. Please do leave me pointers for researching on great neurosurgeons in Seattle.
I need recommendations for neuro-surgeons and neuro-ophthalmolgists with great track record in tumor surgeries around the optic nerve and the carotid artery in the brain. Recommendations for hospitals will also be very helpful!!
Tuesday, October 17, 2006
Is this uncanny or what!
Among the sample set of about 10 people in my and viveks office, there are about 3 people with experiences with tumors and cancers and all are one-off cases. Isn't that uncanny!. I was wondering why I havent seen such occurrences in India, where your usual sample set includes 100s of friends, and neighbours and community who knows everything about each other. Or maybe I am just starting to notice these things now. Or something to do with the US :)
Another crazy thing is all this co-inciding with all birthdays!. We got the first news on thursday night , one day before viveks birthday, we got confirmation from the neurologist on Monday morning, the night before my dad's birthday. And of course, my bday is not far away, but i dont have tests scheduled before it, so hopefully no more news.
I am off of steriods today, so the energy is disappearing. I dint know the steriods actually could give u so much energy!.
And for the not-so-faint-hearted, here are my tumor pics. The bright D shaped blob int he center(slight left) of the pics. It is very clear in the 3rd and 4th images.
http://www.flickr.com/photos/65121371@N00/
Enjoy!
Another crazy thing is all this co-inciding with all birthdays!. We got the first news on thursday night , one day before viveks birthday, we got confirmation from the neurologist on Monday morning, the night before my dad's birthday. And of course, my bday is not far away, but i dont have tests scheduled before it, so hopefully no more news.
I am off of steriods today, so the energy is disappearing. I dint know the steriods actually could give u so much energy!.
And for the not-so-faint-hearted, here are my tumor pics. The bright D shaped blob int he center(slight left) of the pics. It is very clear in the 3rd and 4th images.
http://www.flickr.com/photos/65121371@N00/
Enjoy!
Monday, October 16, 2006
So i think i have a tumor!
Yeah i am still on steriods till end of day. Hence, the exclamations!
So i had my neurologist appointment today morning and got home sometime back. The neurologist concurred with the radiologists interpretation about my tumor being meningioma (http://en.wikipedia.org/wiki/Meningioma). Its a fairly common, slow-growing and benign tumor and the surgical removal is minimally risky. It wouldn't have been been necessary to even remove the tumor so urgently if it wasn't damaging my right optic nerve :(.
There will be a couple more tests to confirm the type, position, risks etc with the tumor and after about 2 weeks, we will have tentative treatment plan in place.
The positive thing about this whole thing is, that the tumor is still small, its a common one, and my mom and dad will visit me sooner than the earlier planned mid-next year!!
It was a crazy morning with a ton of details about all possible options, ifs and buts and questions and some plastic brain demo for the location etc. I am still digesting all this slowly and will be fine tomorrow. I have had some details trickling in since Thursday evening, so its not really a shock. It is going to take the next 2 months at least for everything to get resolved, so life has to go on!
I am mostly in good shape, as there are no problems because of the tumor per say, except the partial vision loss in the right eye, which my left eye compensates for anyway. Its the meds and the tests which take a toll on the body. So once i am done with the meds today, things will be back to normal and my sleep pattern can get fixed.
Also, my mom and dad are firm believers in homeopathy. They mentioned some meds for some types of tumors, and we might give that a try as well. Hell, who wants someone to crack open your skull to remove a mass when it can dissolve inside with medicines:)
And of course, i need a loooong vacation after all this.
Sunday, October 15, 2006
So I think I can dance!
Mis-leading heading ;).
Ok, So I got my MRI images yesterday and also got the radiologists interpretation of it. I am meeting a neurologist on Monday and he will be the one to confirm what exactly the problem is, and the possible treatment options. From the radiologists interpretation, there is a mass in my outer covering of the brain( i.e in the planum sphenoidale). He mentioned it being one of the 3 options and 2 of them are basically some forms of tumor. Both the forms he mentioned are very common ones with lots of treatment options ranging from meds to small surgery. The rest of the details will be known once we meet the neurologist. Who knows, its just some inflammation as mentioned in option 3 and i just need to be on steriods for a while:)
I want my right eye back for sure, i cant give up driving !!!
The amusing part yesterday when we read the radiologists report
- Initial reaction: Scary, since we understood only 1-2 words in the report saying common things like homogeneous mass somewhere. And everything else sounded scary.
- Subsequent reaction: Amusing, since we got nothing from the report. After some googling and talking to viveks uncle who is doc, we got a better understanding. He mentoined that we should chill out since all the options are very treatable and not complicated!
- Current reaction: Nuthing much really, waiting to meet with the neurologist and get some 2-3 other opinions as well. Might have some more tests for confirmation etc.
Oh, and did i tell you i was on steriods. Those are working well as of now, putting me in this euphoric state else i would be in this super-anxious and nervous state, which doesnt really help:)
ahh the wait!!
Well as if I dint have enough meds in my system already, my doc has put me on steriods for suppressing any inflammation/edema behind my eye. The steriods have this wierd effect of keeping me very jittery, super energetic, and totally sleepless. huh:) last week i was sleeping 36 hours, now i cant sleep.
Once all this gets resolved, i will figure out some better topics for hypnagogic!. Too many crazy things going through my mind though right now. I want my normal self back!.
Once all this gets resolved, i will figure out some better topics for hypnagogic!. Too many crazy things going through my mind though right now. I want my normal self back!.
Wednesday, October 11, 2006
The 24-hour sleep
The last few days have been really interesting for me, somewhat in a negative way as well. Here is some background. I have been having this slight loss of vision problem in my right eye since the last 2 months. I went to my optometrist 5 weeks back and because if his lack of action and seriousness about the issue, i finally went to a General practitioner at Virginia Mason. Finally that doc got me to see an ophthalmologist and got some tests done and of course, the docs cannot usually find anything without an mri, so there i am sent for an mri. I am waiting for the results of the mri now to hopefully figure out what the problem wiht my eye is.
So basically on Friday, I had my closed(regular) mri scheduled and the technician basically freaked me out coz of her hurried, very non-helpful and stubborn behavior. I also got affected because i had only 2 mg valium in me which really dint do anything. So i decided 2 things
- get more sedative meds
- get an open mri instead
So I tried the first option and got my doc to prescribe some higher dosage and also let me experiment with it on the weekend. But since my great doc gave me a really huge dose, i ended up sleeping from saturday evening to sunday evening and more and just could not get up coz of the dizzyness. Well that got digested by my body finally by monday evening, and i got my open mri scheduled. The open mri was at a different lab, i had a really nice technician there, who understood my anxiety and helped me get over it. Mri is a painful thing. The open one takes longer , so i basically was getting jack-hammered on my brain for about 2 hours( thats what the magnet sounds like). Now comes the wait for the results.
My sleep cycle is pretty screwed as of now coz of the last few day events, so if i blabber some incomprehensible stuff , u know why thats happening.
So basically on Friday, I had my closed(regular) mri scheduled and the technician basically freaked me out coz of her hurried, very non-helpful and stubborn behavior. I also got affected because i had only 2 mg valium in me which really dint do anything. So i decided 2 things
- get more sedative meds
- get an open mri instead
So I tried the first option and got my doc to prescribe some higher dosage and also let me experiment with it on the weekend. But since my great doc gave me a really huge dose, i ended up sleeping from saturday evening to sunday evening and more and just could not get up coz of the dizzyness. Well that got digested by my body finally by monday evening, and i got my open mri scheduled. The open mri was at a different lab, i had a really nice technician there, who understood my anxiety and helped me get over it. Mri is a painful thing. The open one takes longer , so i basically was getting jack-hammered on my brain for about 2 hours( thats what the magnet sounds like). Now comes the wait for the results.
My sleep cycle is pretty screwed as of now coz of the last few day events, so if i blabber some incomprehensible stuff , u know why thats happening.
Hypnagogic
hyp·na·gog·ic also hyp·no·gog·ic (hĭp'nə-gŏj'ĭk, -gō'jĭk) adj.
Inducing sleep; soporific.
Of, relating to, or occurring in the state of intermediate consciousness preceding sleep: hypnagogic hallucinations.
Inducing sleep; soporific.
Of, relating to, or occurring in the state of intermediate consciousness preceding sleep: hypnagogic hallucinations.
i am off live spaces!!
Here is my last post on live spaces http://rhingle.spaces.live.com/ . The 3 line entry took half an hour. It was all nice and quick untill the live team came along and refurbished it!!
I am off of spaces!!
I am off of spaces!!
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