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.

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!!!

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!

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!

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?

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.

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!!

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!

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.

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!.

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.

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.

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!!