Wednesday, March 30, 2005
I started thetaper of the steroids (meaning I started taking a lesser dose from 4mg to 2 mg) on Friday March 18th. On the morning of Saturday the 19th I started getting headaches again and using tylenol everyday.
Yesterday I stopped the steroids and had a difficult time but was still able to function and run some errands downtown (Redmond). The headaches, muscle pain in my body, and vision seemed to worsen. My balance has also decreased and I was embarassed walking around the stores as I think other customers might have thought I was drunk. I had to take 2 tylenol 3 times yesterday.
Today was just unbearable! I forgot how sick I become when I withdrawal from the steroids. I was kind of scared for when the prescription ended but I did not think I would get so sick so fast. The pressure and pain in my head was unbelievable! On top of that I was experiencing muscle pain throughout my whole body like a bad case of the flu accompanied by shakes and chills.
I am not sure why but it has affected my back and spine. I noticed Monday when I walked down to the mailbox that it hurt to walk and was difficult. I could feel every step shoot up my spine. It was as if I had no shocks in my body. I also began to start having visual problems this weekend and it turned to double vision again.
All this was happening today and I could not get any relief or even go back to sleep due to the pain. I must say that I now really empathasize with people trying to kick a drug habit. It is horrible! I had Harley call the doctor and he decided to restart the steroids again (I think this will be the 9th or 10th time on them since July). When I tried to drink water and take the medicine I threw up all my fluids and dinner from the night before. Thus I had to shower to clean myself up. I was so exhausted that I fell asleep in a robe and with a towel on my head.
When I awoke near 11 am I was able to take a few bites of a frozen meal and hold down my medicine this time. Then I think I went back to bed. I got up again at 1:30 pm and was able to check my email and wash the dishes. I got tired out so I lied back down until almost 5:30 pm and it was time to get ready to go to my asl meetup tonight.
I am still really weak and missed my daily walk or workout. I definitely feel better than this morning though and the headache and double vision are gone. I could actually read the tv captioning this evening from 15 feet away whereas the past couple nights I had to sit directly in front of the TV (about 2 feet and I still had problems).
I wish I had something more positive to discuss but the reality is that not everyday is a sunny day. I would like to write some catch up posts about the good things over the past 2 weeks but my dang computer is infected with something and I can't access the web. I am using Harley's laaptop but I have a very hard time typing on it (takes me FOREVER on this little keyboard).
Hopefully I can get the computer fixed soon. I am just glad to be able to function again and feel somewhat better. I hope tomorrow goes well. I will be going to phyical therapy in the afternoon.
Have a good one tomorrow!
Wednesday, March 23, 2005
So we held an extremely successful asl potluck for the first time at our house with the new deck. I cooked up one of my all time favorites while growing up in upper Michigan: Porcupine Meatballs. I made a double batch (2 lbs of ground turkey) and they proved to be a hit as there were only 4 or 5 meatballs left over. It was a terrific spread! Everyone brought something different and some wonderful dishes!
In total there were about 15-16 of us there which is the largest turnout we have had for a meetup group yet. (LOL I guess the key here is that people like food. :o) ) Even some friends who live about 45 minutes away came to the event. One of them is hard of hearing and I met him in my refresher asl class last spring at the hearing speech and deafness center - HSDC. Both he and his girlfriend are taking asl classes at the HSDC right now. My other friend is just beginningto learn sign language from a book, the computer, and our meetup group but it does not work for her schedule to take a formal class.
One of our meetup group members is in high school but taking asl classes at the community college. She grew up with a very good friend who is Deaf. Her friend recently got a cochlear implant but is still a very good signer and uses sign in addition to what she gains from the CI. It was wonderful to have met her this evening. We also have another high school student in our meetup group who is hard of hearing. Like Sarah, Josh is taking asl classes at the community college. I believe both of them will have their two year degree by the time they graduate from high school. All three of them are very bright and hard working. I am impressed by their maturity and talent at signing!
After some great food and socializing, some of us enjoyed a nice soak in the hot tub. We are thinking of maybe making this a monthly event depending on Harley's schedule.
Monday, March 21, 2005
I started the taper off the steroids on friday. That means I went from 4 mg of decadron a day to 2 mg a day and boy did I feel that on Saturday. I slept alot on and off yesterday because it was rainy anyhow. I will write more about how my week went. All in all it was good and pretty busy.
Maybe I cannot sleep due to all the excitement that will be happening this week.
Here is what is pondering my mind while I was trying to rest:
Today I have to make up asl card games for my meetup group this week and family vacation.
I want to get my haircut today or tomorrow and I am contemplating what color to dye it.
I am really excited for the Potluck/asl meetup I am hosting at my house on Wednesday night.
Thursday we leave for the family vacation on the Oregon coast (Lincoln City). So I have to run through the grocery list, packing list, itinerary list and make sure I have everything ready.
Finish laundry and cleaning before potluck and vacation.
My thinking is by writing this post and maybe taking a quick soak in the tub it will relax me a little so I can get a few hours of sleep. I do have to finish making up the cards before Harley goes into work tonight because he is going to use the laminating machine for them. Speaking of which, I discovered that laminating sheets are really expensive! I remember in college when we used to go to the library and laminate magazine pictures like mad to cover the drury cinder block walls of the dorm. I recall it being quite cheap back then (but of course this was over 10 years ago and I had the benefit of being a student....LOL). Ahh sometimes reality bites!
Have a great start to your week!
Saturday, March 19, 2005
Starting Thursday I tapered on my steroids from 4 mg to 2mg. Friday was kind of ok but this morning my head really hurt and I had alot of head pressure. I did not have any tylenol as it does not seem to work for me. I have excedrin, advil, and I-B profen but I cannot take any of those with the medication I am on. So Ravi was kind enough to pick me up a bottle of tylenol extra strength on his way over to my place.
The tylenol did not seem to relieve my headache but I still wanted to hike and I was able to function with a dull pain. We came prepared with our rain gear and this was the first time I tried out my new rain gear on the trail. Harley and I bought rain gear at the labor day REI sale for the backpacking trip we were going to take during my birthday. But when Harley had the time off I got sick again and we could not go.
So it was really fun to put it to the test and I must say that I really enjoyed hiking in the rain. In fact, I liked hiking in the rain more than when it is not raining as the smells are fresh and enhanceded in the woods. Also, I find I get less parched in the rain. The whole experience reminded me of when I was a kid and liked to put on my raincoat and play in the puddles and ditch when the water was rushing through it after the spring thaw.
Ravi had some new equipment to test out too. He just purchased a pair of top quality hiking/climbing boots that he broke in for the first time. The boots accommodate cramp-ons which are metal claw type attachments for treking across glaciers and snow.
When we reached the summit the wind was something fierce but exhilirating. My dogs Katie and Jake did not like the wind and kept trying to find a place in the bushes to take cover. It appeared that on the bigger mountain (Mt. Si) that it may have been snowing. We were at an elevation of 1550 feet and Mt. Si is 3900-4000 feet.
Afterward I cooked the best indian food I have ever made! It is too bad that Ravi had to head home. I made bombay mango chicken with basmati rice. It was a perfect ending to the day!
Oh by the way.......I accomplished this hike without any falls this time. ;o)
Wednesday, March 16, 2005
Anyhow, I had vacumned the whole house and the wind tunnel filter was chuck full of dust. So for the first time I decided to soak and then wash it. In the midst of letting the kitchen sink fill up, I heated up my lunch and ventured upstairs to look up what a nystagmus was. I completely forgot that I left the water running in the sink! When I finished lunch and my post I returned to the kitchen to find my nicely cleaned floors had become a giant wading pool around the sink. In addition, a great deal of the water flowed under the sink somehow and I had to take the time to sponge it up by hand and take all the contents out from under the sink.
Sometimes it seems like when I get a step ahead, I am thrown two more steps back. Often due to my balance problems and difficulty with my hands sometimes, I spill and make lots of messes that I have to take the time to clean up. It took about 45 minutes out of my day to clean up the overflowing sink. I think I need to take a break and go soak in the hot tub before I have to do everything else I need to do today.
General Information about Nystagmus
The most common types of infantile nystagmus are 'congenital nystagmus' (CN) and latent/manifest latent nystagmus (LMLN). Many people with CN are also partially sighted; some are registered blind; few of these can drive a car, most encounter some difficulties in everyday life -- both practical and social -- and some lose out on education and employment opportunities. However, CN or LMLN by themselves do not necessarily reduce acuity substantially and many people with these disorders lead normal, active lives. Those with very poor vision usually have associated sensory deficits responsible for the greater part of their vision loss.
There are many types of adult-onset acquired nystagmus. These are often associated with oscillopsia (the experience of the world 'wiggling'), poor vision, and loss of balance. Often acquired nystagmus is a result of neurological problems and may respond to certain drugs, depending on the cause of the nystagmus.
Below are some observations which apply in MOST cases
Glasses or contact lenses do not correct nystagmus although they may damp (reduce) CN; they should be worn to correct other vision problems. Vision may vary during the day and is likely to be affected by emotional and physical factors such as stress, tiredness, nervousness or unfamiliar surroundings. Most people with CN and no other visual problems can see well enough to drive a car.
Anyhow, here is a quick report on my visit. I did not have a captioner (I do not know what happened to her and I hope everything is alright). So I have yet to review the doctors hand written notes to me but here is the jist of things:
YEAH! THE TUMOR APPEARS TO HAVE STOPPED GROWING LARGER! Also, I was corrent in my layman's assessment of viewing the films earlier in that the tumor is definitely dying (showing more blackening from the inside on the MRI film). It will take another 6 months for it to continue through this process of dying before it will stop swelling and collapse in on itself. The tumor will never disappear like cancerous tumors do from chemotherapy. With this type of tumor and condition there is no cure but we can kill tumors with radiosurgery. So what happens is that they sometimes shrink a little when they die but it will always be with me unless I have surgery to take it out.
Okay so what does this mean really? Welll I will be on and off steroids and medication to control the side effects and illness caused from tumor swelling. That is why I was having vision problems and swelling of the optic nerves. The tumor had gotten quite large.
There will be no further treatments until we have resolved the issues with this first tumor. So I will not have radiosurgery again for at least another 6 months or more. It looks like the total treatment time is going to take alot longer than I anticipated as I have 2 more tumors at least to treat at this point. I have other tumors in my head too but they seem to be small and stable so we do not worry about them. We are watching a large meningioma butted up against the treated tumor and another acoustic neuroma on my auditory nerve on the left side. Although the left acoustic neuroma is smaller (about 2 cm), both acoustic neuromas are indenting the brainstem but I do not have a dangerous level of intracranial pressure that would require immediate surgery. There appears to be no cerebral spinal fluid blockage.
It kind of sucked not being able to go to work like my cohort (teaching) but now I am glad for that. There are lots of illnesses going around which would have just hammered me something awful! Plus I would have been under alot of stress as a first year teacher and it is critically important for me to be nursing myself as much as possible during this time. So I am learning to cherish this time off and take it in stride like Martha Stewart (what an amazing woman she is eh? Talk about gaining perspective and perserverence.)
Okay I may revise this post later. I have a busy week here. I am still trying to finish cleaning house today, I have a friend to visit who just had hip surgery, and I am seeing an old friend today who I have not seen in a couple years and going to my asl meetup group. Tomorrow is our turn to host the "guys" poker night. So we are having a St. Patty's day cookout party and my friend Karen (one of my former asl teachers) is coming over to visit with me as her husband is in the poker pool. Friday is also the monthly asl coffee night with the Bellevue Community College ASL club. Phew! I am glad the Silent Games at the center for the Deaf was cancelled for this Saturday night!
Tuesday, March 15, 2005
Life is a mixture of sunshine and rain,
Laughter and pleasure, teardrops and pain,
All days can't be bright, but it's certainly true,
There was never a cloud
the sun didn't shine through----
So just keep on smiling whatever betide you,
Secure in the knowledge
God is always beside you,
And you'll find when you smile
your day will be brighter
And all of your burdens
will seem so much lighter-----
For each time you smile you will find it is true
SOMEBODY, SOMEWHERE will smile back at you,
And nothing on earth
can make life more worthwhile
Than the sunshine and warmth
of a beautiful smile.
Author - Helen Steiner Rice
Monday, March 14, 2005
Trying to smile on my last day in California on the Big Sur coast post treatment. This was two days after (Sunday July 18) my last radiosurgery session and I was very nauseated and kept vomiting. I could not eat or drink. As beautiful as it was, I tried to rest my eyes most of the way. We flew home later that day out of San Jose but the next morning I could not get up off the couch or out of bed without violently throwing up. My parents and Harley (who had to work) had to coordinate with the Stanford doctors to prescribe me some emergency medication: Zophran (commonly used for chemo patients) and steroids - the decadron.
Harley and I with the Big Sur coast of California in the background. We ran into another couple on the drive and they wanted us to take a picture of them. Therefore, they were kind enough to return the favor so we could get at least one shot of us together.
Me again. I have no makeup and I am going ol' naturale here. Notice how I have a few bald spots on my head. For anyone who has radiosurgery to the brain losing a little hair in some places is normal. I had 3 round bald spots the size of a quarter. The hair has grown back now and is about 2 inches long.
A robotic arm delivers beams of radiation to various angles around the brain. So I figure where I lost some hair must be where the beams were most concentrated or points of entry that were used often. It is no big deal really and is a heck of a lot better than having your head shaved for surgery or losing a whole head of hair through chemotherapy!
For the past 3 days now I have felt well enough and enjoyed about 2 to 3 hours of yard work (pruning and hauling branches and refuse into a brush pile...lol also poop pick up). I noticed there were several left over wood refuse pieces on the one side of our new deck closest to ground level and along a terraced rockerie. I got myself a recycle bin and sat on the edge of the deck and slid along picking up the wood.
I do not know exactly what happened but all of a sudden I just fell over from a sitting position and literally slammed the left side of my head and ear into a huge rock! SOB that hurt! It was so hard that I heard a loud metallic ping in my head as if I was a robot and someone just disconected my head and kicked it with a steel toe boot. The pain was excrutiating and shocking! I cannot cry so my immediate pain response was to let out one very loud and long yodel of frustration (I really have no idea how loud as I can't hear any sound but I know it was at the top of my lungs).
I am sure our only neighbors must have thought I was really pissed off or something. They would never come to help because they are afraid of our dogs due to the mother's previous pychotic trama eons ago that she never sought therapy for. For crumps sake both my husband and I were bit in the face by dogs when we were kids and we dealt with it and moved on to enjoy the companionship of the canus species.
My ear had hurt really bad and I was shaking. So I just huddled there for quite a while and our dogs Katie and Jake were very worried. They came over and in their own way were trying to hug me by putting their heads under my arm or in my lap and licking me up as if I were their own wounded young. I realized I was alone and worrying them. After pitying myself a little I got back to business and shook it off.
Even though my ear still hurts and is purple today, I was still able to go for my daily walk with the dogs yesterday evening when Harley returned from his dive. It was great! I really do not need my walking stick much on level terrain (due to the steroids) unless it gets dark out. I was even able to run for about 1/4 to 1/3 of the walk. I was in jeans and hiking boots but it just felt great to run for about 10 to 15 minutes and it was perfect breathing weather (not too hot and not too cold).
I am also happy to note that more of my daffodils are blooming in the driveway. Later this week I am going to cut some and put them in this beautiful green glass vase that my mother gave me over christmas time. We are having some people over on St. Patrick's Day so that will create a nice centerpiece. (also blooming in the yard now are the flowering shrubs Perius Japicona - AKA "lily of the valley" bush and some pink and white heather).
My sore throat remains still. Yesterday I started taking some echinacea pills, vitamin C, and drinking pink grapefruit juice and echinacea tea. There is an illness going around and my hiking friend has come down with a sore throat too. I am not sure if I caught something or if this is just one of the steroid side effects kicking in as I have been on them for a week. The first time I took this steroid in July I formed a sore throat within a week, a burnt taste in my mouth, and bloody noses. The burnt mouth sensation is also there now so I am guessing that the steroids are taking effect and toying with my immunity again. Good thing I am not in a classroom teaching right now!
I will be visiting one of my doctors (a radiation oncologist) this afternoon at 3 pm. She will be giving me the heads up on this recent MRI which appeared to me as showing more signs of necrosis. I sure hope that the swelling has started to subside and that there is no more growth. It is really frustrating to keep going back and forth on steroids thinking I am getting better and then getting really sick when I go off. All of the doctors say that I cannot stay on the steroids indefinitely. Some people do for their conditions but for mine I cannot because it threatens my vision. If the symptoms do not subside on their own without steroids then I will need to have brain surgery which I really do not want to go through.
Well the sleeplessness has kind of kicked in now and I only slept for like 4 hours again. So I am going to lie back down for a nap and put my liquid gel drops in as my eye feels really dry. I will post later this evening with what I find out at the doctors. Let's hope it is good news!
Sunday, March 13, 2005
They just changed the way you can post so you do not have to register but I am new to this and do not know much about it. When I tried to post a comment to my own blog it seemed to work but I did not actually follow through with putting in an actual comment. Perhaps I will just try on this entry and write "test" or something.
Please do me a favor and try to post a comment. If it does not work then send me a private email to let me know.
Well I was really excited, longing for it and I finally did it! It was a beautiful day and the trail was perfect! Apparently everyone else had the same idea as we were very fortunate to get a parking spot as someone was leaving when we arove.
We hiked the "Little Si" trail which is 5 miles round trip to an elevation of 1500 feet. Prior to this I have been walking for at least an hour nearly every day on the Snoqualmie Valley Trail but I do not consider that hiking. That is walking because it is all level and flat. The Snoqualmie Valley trail is an old railroad grade that was used to cart supplies between the small towns of Duvall and Fall City back in the day. The trail extends for 36 miles and I have been on 5 portions of it so far.
On the steroids I can walk pretty fast on flat and level terrrain but uneven and steep grades are slow going for me. I took my hiking poles and used them mostly on the way up and on the way down. On the level parts I did not need them. Normally this is an easy hike but I found coming down very challenging with my balance as there are many steep grades, large roots, large sharp rocks, and shards of sharp rocks to slip and fall on. So I was extra cautious not to trip and fall onto some stump that would pierce me or something that may damage my eye.
Last time I hiked this trail I think I was off steroids and had a very difficult time in the fall (September I think?). Back then I fell and puked several times on the way up. I was dizzy and exhausted but determined to make it to the top. This time I felt fantastic! I was not exhausted at all! I think I fell like twice but they were not bad falls. I think once I tripped over a rock I did not see and the other time I just could not negotiate my balance on this steep step and I kept sitting back down. In fact, there were a couple times when my foot got snagged on a root and I was able to recover my balance without falling!
I don't know if you are all hikers but for me there is nothing more satisfying then making it to the summit of a mountain on your own. Driving to one is glorious but it just is not the same rewarding feeling as putting in the effort doing it yourself. The top was just amazing! The day was perfect and there was a slight breeze which felt good and kept us from overheating as we hiked in t-shits. The view of the cascades and overlooking North Bend was so serene and calming. The large mountain "Mt. Si" looked absolutely majestic in the afternoon sun and every detail of its geologic features were etched finely today. It gave me something to look forward to as one of my goals is to make it up there this summer.
I have included links to these 3 trails in my post from yesterday titled "The munchies are back" if you are interested in seeing some photos and more info on these trails. The links can be found at the end of the post.
Saturday, March 12, 2005
So far our pink cherry is in bloom and our yellow forsnythia bush. The azaleas (which I think are light purple) have little buds on them so probably another month. The rhodondendrons bloom in May. Gosh I just love spring!
Have a great day!
The next morning I awoke early just literally famished! My stomach was growling as if I had not eaten dinner! I could not even sleep. I tried to lie there and go back to bed until it was time to take my medicine again (it is supposed to be taken with food) but I just could not rest. I had to get up and instead of my normal bowl of strawberry banana cheerioes I had to eat something heavier. So I had a honey wheat pancake slathered with natuaral applesauce, a little whipped cream and sugar free syrup. Boy that was good!
The rest of the day seemed to go well but I was starved again at about 11:45 pm! I had two slices of vegetarian pizza for dinner and 2 snyder's hard pretzels. I was too lazy to make a salad this time so I ate low sodium tortilla chips with veggie dip and then I switched from the chips to the rest of the carrots I had in the fridge. I also had some sugar free chocolate coated bing cherries and a few nutter butter bites as they are not too sweet.
I checked my weight yesterday and it is fortunately stable at this time (20 lbs less than the last time I took decadron). For those who don't know, I puffed up like a pumpkin in September and gained 12 lbs on the decadron which I had taken on 3 seperate occassions since the treatment in July. In late October and November I began to lose all the weight and more. So I have been pretty happy at my present weight but I am now very wary that I am taking decadron again. Fortunately I feel I have about 8-10 lbs to play with and still be the same as when I got treatment.
Also, the first couple times I was on decadron I got really bloated but my face was not so bad. It was puffy but not humongous like it got at the end of September. I literally turned into a pumpkin head! Even though I gained weight I was still not as huge as my face portrayed me to be! If you looked at just a snap shot of my head back then you would have thought I weighed 200 pounds! I think that it swelled to its maximum capacity as my face was sore, hurt, and it was hard at times to talk correctly.
Well my head is not a pumpkin yet but I feel my face starting to swell. Last night when I looked in the mirror my face looked unusally round. Maybe it was because I was late to take my medicine (I missed the dose and took it 2 1/2 hours late) because today it is looking more back to normal. So far I think I have been kind of fortunate on this course of steroids as I am taking diamox with it which acts as a diruetic (makes you release body fluids whereas the steroids make you retain body fluids).
The other side effects that are starting to kick in are the acne and gas. Last time when I was on the prednisone it seemed like I did not get the acne until two weeks later. It has been week now on the decadron and even though I do not wear makeup often, my skin is getting rough and acne is beginning to form on my neck, jaw, and chin area. Next will be my shoulders which seems to be attacked the most and then my whole face. I have bought some neutrogena spot acne medication but I am not sure how much it really helps.
Although I am getting the munchies, puff face, and acne I am feeling pretty good! I was actually able to go out and do some yard work yesterday and my balance is very much improved. It boils down to which is the lesser of the two evils ya want? I like to feel more normal and be able to do things which the medication allows. I was actually able to use the rockerie stairs on the opposite side of the house that I have avoided using for months AND I was able to carry a bin of leaf matter while doing it without a railing or hiking stick to help with balance.
Also, when we took the dogs for a walk we were in a hurry because we had some plans so we jogged for about 10-12 minutes and I was able to do it! When I am off the steroids I do not have stable enough balance to run. LOL it was funny though because when I stopped my body felt like it was still moving and I fell to the ground and a lady walking by probably thought I was purely exhausted from running for miles or something when I only ran 10 minutes!
Today is going pretty well so far. I returned to my strawberry banana cheerios because I need the calcium and it has potassium (diamox depletes potassium levels in the body). I topped it with a fresh banana for more potassium. In the mid-morning I made myself a lowfat portabella mushroom sausage to satisfy my hunger and get in good source of protein. I just bought a huge bag of celery hearts at Costco which I am going to chop up for the day. One of the nice advantages about going through this is that I have formed a love of celery when I despised it before. This is great because it has alot of fiber and curbs hunger. I get dry mouth often and the celery seems to have a high water content that is really helpful for thirst.
Well the day is beautiful again! We have been blessed with fantastic weather this winter. Winter has been gone for some time now and spring is here. Flowers are blooming and the leaf buds on the trees have opened. We are going to try taking my first hike since September. I have been walking alot but on level trails only (the Snoqualmie Valley Trail - check it out at http://www.metrokc.gov/parks/trails/trails/snoqv.htm). Today we will attempt to go on a trail with some rough terrain and elevation but not too bad. It was what I was considered an easy hike but will be challenging now with my balance and I will need to use my hiking poles. You can check out today's trail called "Little Si" at the following links:
Here is the sister mountain "Mt. Si" that is one of my favorite hikes and I hope to accomplish this summer. I did not get to hike it last year as I had sprained my ankle when I came back from treatment. :o( You can view photos of it at this link:
Thursday, March 10, 2005
Ok. I was just excited about those two symptoms going away for awhile. Have a great day!
So we did a bunch of standardized tests to see how my walking was when I went forwards and backwards and moved my head to either side and up and down. We also tested whether I could read an eye chart from a distance while moving my head side to side and up and down which I could not. The first line was kind of easy because I could memorize it and they figured that out. Then the therapist also put these neat goggles on me like a scuba mask where I could not see put she could video tape my eyes. It was pretty cool! She shook my head back and forth fast and up and down to watch the movement of my eyes. The test is called a VNG (videonystagmography test).
I am not sure how to explain this but I have what is called a "nystagmus". It is one of the reasons I am having such difficulty with balance and need to put my motorcycle riding days to an end. Last spring well renting a bicycle, I looked over my right shoulder to see if Harley was behind me and when I turned my head back center, I lost control of the bike and crashed. The nystagmus is predominant in my right eye. When I make quick movements with my head I get disoriented and my field of vision keeps moving. It is hard to explain. For example, while I am walking or jogging I cannot really makeout people's faces because they bounce up and down too much.
Prior to seeing the physical therapist, I had an ENG (electronystagmography) test done at the Seattle Ear Clinic where the nystagmus was diagnosed. The test I had there uses a recording of eye movements from electrical signals instead of video. I had lots of wires hooked up to my face and had to watch lights pass by on a bar on the wall. They also recorded my eye movements when my eyes were closed and I was telling a story. When my eyes are shut, for some reason my brain still thinks I am moving and my eyes rapidly move back and forth.
So here is what the brochure says about the nystagmus. I need to do a search online for a more appropriate explaination but for now this might help you to understand it:
"THE ANATOMY UNDERLYING EYE MOVEMENT TESTING"
Although your balance system is located primarily in the inner ear, it is connected with the brain and brainstem, the eyes, and the sensory nerves throughout your body.
Each of these centers sends and receives messages that permit you to maintain your balance. When a disorder is present, these messages cause you to feel abnormal dizziness.
One clearly measurable sign of what is going on with your balance system is a rapid, involuntary eye movement called NYSTAGMUS. By stimulating the nervous system in various ways that usually affect balance, and then carefully measuring your eye movements, your physician can learn much about any abnormalties in your vestibular system.
Well hmmn. That did not exactly tell me the definition of a nystagmus. I have no idea if this is a permanant thing or not. I guess this is something that I need to ask the neurotologist and physical therapist. I was expecting a typed report of the data analysis from the doctor or audiologist that performed the test but I was disappointed to find out that no report was made except unreadable hand written notes. When I asked for a copy of the medical records, all I got was the computer data charts that did not tell me much.
I guess I will have to mark that on my list of things to do this week.
The other interesting test that the physical therapist did was to have me stand with my shoes off and eyes closed. This worked pretty well if I concentrated. However, when she had me stand on a foam pad that was about 2 inches thick and she had to catch me from falling. I could not feel myself moving or falling at all! It was like the time I was out with Harley for a walk and I was sort of standing on an incline. I went to take off my jacket and started to fall backwards. He caught part of my jacket just in time to stop me from falling over backwards! I literally had no idea as I could not sense it!
Right now I have facial palsy on my right side that started on December 14th. I tried taking steroids to remedy it but this is caused by the brain tumors and not from a viral or bacterial infection. Thus, the therapist assigned me 5 facial exercises to do 50 reps each of in the mirror each day. It does not seem to help much. It has been 3 months. Dr. Vermeulen who administers Gamma Knife and FSR radiosurgery here, said that it took 4 to 4 1/2 months before one of her patients showed improvement in the facial weakness. Still, there were patients who had permanent facial damage. They cannot assess yet which will be the case for me.
At the Seattle Ear Clinic I also had this test done to determine the amount of facial nerve function I had left. That test is called an ENOG (Electroneuronography test). For this procedure they again hooked up electrical wires to my face and shocked my facial muscles to stimulate the nerve. I had the test done twice (when starting steroids - Prednisone and when finished). Both times revealed my facial function to be at 52%. I can't really tell you much about what that means except that I do not have face droop on that side. The weakness is apparent when I try to grin with teeth, drink, eat, raise my eye brows, or blink my eyes. I guess you gotta make it work for you so now I can do a cool trick and wink at people pretty easily with the left eye because the right eye does not close as easily.
Part of my eye problem is that the right eye is drying out due to not blinking it as much and lack of tear production caused by the facial weakness. So I am on this regimen where I have to administer artificial tears hourly and use at thicker tear source at night (Refresh Liquid Gel). I often rub my eye or have to manually close it too.
My next appointment and actual first physical therapy session is scheduled for March 31st. I told the therapist that my goals were to work back up to learning to swim again, being able to dive (balance on shore with my equipment), hike with poles, and backpack. It would be great if I could be able to rollerblade and ski again too. The waterskiing would be cool but I did not get to do that often enough anyhow and as far as the motorcycle, some day Harley is going to upgrade to a touring bike so I can sit back an enjoy the scenery. I did have a sweet chic bike though (teal, purple and white Kawasaki EX 500 - great and fun bike)!
I guess it is a good thing I never invested in that mountain bike I wanted. I used to love cycling back in high school but my other hobbies took over (primarily rollerblading).
Ever since I can remember getting my first rubber shark to play with in the bath tub and my first book about a marine biologist as a kid, I have always been a water lover, mermaid, and fish. Diving and the sea have been one of my life's passions. I have been a scuba diver now for about 14 years in which time I have attained open water, advanced, rescue, equipment specialist, night diving, low visibility and navigation certifications. Although I did not continue to earn more certifications I have been on very deep dives and technical wreck dives also. In addition, I took an aquatics class and attained my life guard certification while back in my undergraduate studies (um...err 10 years or so ago).
So you could say I felt rather like a natural in the water. I have always been drawn to it and had a desire to jump in. It also has mystified me to just sit a gaze upon the ripples of a lake, river, or ocean. I had heard stories of other people afflicted with NF2 who nearly drown unexpectedly in the midst of swimming. I felt very fortunate since my diagnosis as this did not happen to me and there are a few times after my diagnosis where I felt I helped someone while diving who may have got into some serious trouble. I even saved myself in a bad current dive when a new buddy (coworker) took off on me in an area that was unknown.
However, I may have mentioned earlier that I had two near drowning incidents during the course of my treatment in California. Actually I had one scary experience a of couple years ago but I just brushed it off. My dad, sister, and I were water skiing and we stopped at one end of the Moses Lake Reservoir to take a dip. We were accustomed to diving in off the boat into the dark murky water. When I did so, I guess I angled straight down instead of out. It seemed like I was continuing downward for a long time so I finally stopped myself. I had my eyes closed and starting swimming for the surface. It was taking an awfully long time and I was seriously running out of air! I opened my eyes to see where I was and everything was green around me but I could see a faint light at the surface which appeared a long way away. I immediately and frantically started upward toward the light. I made it but my lungs kind of hurt and I was really out of breath when I reached the surface. I thought "Wow! That was really weird! I guess I will not do that again!"
Fast forward two years ahead now to treatment. I apologize if this is a repeat but I cannot recall if I told this story yet. The first day after treatment, Harley, my parents and I traveled down to Santa Cruz to do some boogie boarding. My mom watched while the 3 of us had a blast being tossed in the large waves. One time when I was on the boogie board I got hit by a really huge wave, knocked off the board and tossed underneath the water. My head hit the bottom and I heard a loud metallic sounding ping in my head which hurt. I was stuck under and could not stand up. I starting swimming for the surface but soon realized I was clawing at the sand and had my face planted into the bottom. Knowing the anatomy of a wave, I determined that if I stopped and relaxed that the end of the wave would bring me out and back to the surface. So again I did not worry to much about it because I thought I would just be more careful and not enter such big waves anymore.
On the last day of my treatment I thought I would finally utilize the hotel pool for a quick dip before going to the medical center. I was alone but the pool was really small and not over my head. I have always enjoyed doing tricks in the water such as summersaults and handstands. Therefore, without thinking, I closed my eyes and performed a summersault in 4 feet of water. But something happened! I did not return to my upright position at the surface and I could not stand up! I got disoriented doing the summersault and became lost under the water! I kept swimming around and trying to stand up to no avail. I was seriously very worried and thought that "Yup I think I may actually drown this time." I thought about how long it would take for anyone to find me and I determined that it would most likely be beyond the time frame of revival or I would suffer permanant brain damage. After thinking through all this I stopped panicing and realized that I must save myself if I wanted to live. I opened my eyes in the stinging chlorine and tried to figure out a point of reference. I could see the black line on the bottom of the pool but it was tilted downward so that meant I was facing the bottom at an angle. From finding the bottom I felt my way over to the wall, grabbed the side of the pool and pulled myself to safety. Whew! That was a close one and very unexpected!
Since then I have not been in the water except once for a quick dip in the shallow river water after walking the dogs with a friend on a hot summer day. However, I have been craving to go swimming and I was determined to return to the water! They reopened the gym pool in January and I tried it out for the first time 2 weeks ago from Tuesday (February 22nd).
I loved it! But alas I discovered that I need to relearn how to swim. I swallowed a lot of pool water and when I tried to swim on my own I was all over the place going into everyone's lane. I have always been a pretty good floater but now it felt like my ass end kept sinking no matter how much I kicked. I tried to swim a couple laps without floatation......once on my back and once doing the crawl stroke. I just could not seem to coordinate it and finish a complete lap unassisted and without drinking a ton of pool water. At one point I used one of the floatation devices you put between your legs but the dang thing fell apart half way leaving the pieces floating around the pool! For about 20 minutes I used the kickboard to do laps. Wow! It really uses different muscles than walking as my legs were really burning!
I want to learn to swim underwater with goggles but I have to wait to go with Harley on his day off. There was a scuba store closeout and they were selling these great water sports goggles that work like a dive mask and create a seal on your face (thus you do not have any water seepage into your eyes such as commonly happens with traditional swim goggles). There was an old guy there with a mask and snorkle swimming and I thought the snorkel would be a great idea to solve the water swallowing problem I had.
Well I am very determined to get back to where I was before or to at least be able to swim decently to take care of myself and dive! It is very humbling to have a moderate amount of athleticism that seems to come natural to you and then have it taken away. Before I could not really understand when people could not do or were afraid to do the activities I routinely partook in (diving, rollerblading, hiking up mountains, waterskiing, swimming, riding a motorcycle, etc.). I think losing balance has been harder on me than the onset of deafness. To me, balance was highly important and I can see how easy it is to take for granted. There are so many simple things that we do in daily life that people just have no idea it is your balance system keeping things in check......something as simple as putting on underpants or bending over to tie you shoe! Sometimes I feel like I turned age 8o overnight as moving around is not as easy and efficient as it once was. I do much bumping around as if on a boat and my body is continually bruised.
Well, my hope is that I can regain most of the balance once the tumor stops swelling and I become more involved in physical therapy. My balance does improve while on the steroids because it alleviates some of the tumor swelling symptoms. However, I cannot stay on the steroids indefinitely and everytime I stop using them the balance worsens. Maybe in 4 to 6 months eh? I sure do miss the diving and investigating everything under the water.
Wednesday Harley wanted to look at them. Since he was viewing them it picqued my curiosity too. There was continued signs of necrosis (cell death represented by a blackening color within the tumor center) apparent in the tumor I had treated in July. However it still had a bright white outer rim which in January the doctors could not assess if the increased tumor size was due to new growth or swelling of the tumor.
Just viewing them from a distance in the sunlight and from the kitchen table I could not determine really whether my MRI looked good or bad. It is great that the center shows cell death but the main concern is whether it is continuing to get larger and if that growth on the outside is new and expansion of the tumor. It was just too much for me to deal with and I figured I would wait until the report was mailed to me and my appointment with Dr. Vermeulen on Monday.
But this morning however, I got a wild hair up my butt to make a comparison between the two sets of films taken from January 10th and March 8th. Looking at the two films was the only way I could know if there were any changes. In my layman's analysis I am rather excited! There is definitely alot more cell necrosis happening inside the tumor (black color on the MRI). In the January MRI, the tumor appears to be starting necrosis but is definitely more white.
On the MRI from Tuesday the outside is still white. However, the margin of whiteness is much less than it was before. I really cannot assess if the tumor has gotten bigger. If it has, it would be by mm. It was pretty large to begin with and there is not much space within the brain stem between the two acoustic neuromas (my brainstem is scrunched between 7 mm of space from the last MRI taken).
It is hard to tell because there are slight variations in the slices between the MRIs taken on the two dates but on some of the films is does appear that the left acoustic tumor may have increased in size somewhat. The last MRI report (from January) reflects that it does appear slightly larger but no significant measurement in size increase was made. I would not be surprised if it has grown because within the last month I have been experiencing a lot of involuntary eye twitching of the lower left eye lid which is really irritating. Prior to the very significant growth of my right side tumor, I experienced the same eye twitching accompanied by some involuntary facial muscle contractions in my right cheek and jaw.
Well seeing all those tumors in my head is daunting I must admit but I am excited to see more signs of necrosis in the treated tumor. Let us hope that the treatment is working! The experts at Swedish Medical Hospital met and reviewed my films about a month ago. Like the University of Washington Neurology board, they proposed no surgery to that area at this time (whew!). They also informed me that if the tumor is indeed swelling, it may take another 4 to 6 months for the swelling to cease and my symptoms to alleviate.
Yet these determinations were made before it was discovered last week by a University of Washington neuro-opthamalogist that my optic nerves are swelling due to intracranial pressure. They decided to put me on medication. I started the steroid decadron again on thursday (I have taken this steroid 4 times since July and Prednisone 3 times) and my prescription of diamox came in on friday. I will be taking the decadron at a low dose (4 mg daily) for at least 2 weeks and then probably tapering off. I am unsure how long I will be on the diamox (which is an anti-inflammatory drug they use to treat glaucoma in older patients and altitude sickness in mountain climbers). I am really hoping that this does the trick so I do not need a shunt placed in my head to relieve the pressure and that my vision problems are alleviated.
Wednesday, March 09, 2005
And feel His quiet power,
Let us daily keep in silence
A meditation hour.........
For to understand God's greatness
And to use His gifts each day
The soul must learn to meet Him
In a meditative way,
For our Father tells His children
That if they would know His will
They must seek Him in the silence
When all is calm and still........
For nature's greatest forces
Are found in quiet things
Like softly falling snowflakes
Drifting down on angel's wings,
Or petals dropping soundlessly
From a lovely full-blown rose,
So God comes closest to us
When our souls are in repose........
So let us plan with prayerful care
To always allocate
A certain portion of each day
To be still and meditate.........
For when everything is quiet
And we're lost in meditation,
Our soul is then preparing
For a deeper dedication
That will make it wholly possible
To quietly endure
The violent world around us.......
For in God we are secure.
by Helen Steiner Rice "A Collection of Love Gifts"
Okay let's get it out into the open. I have had several people ask me how I feel about going deaf. I am writing about it now because I am inspired to do so.
First of all, it is not nearly as bad as I had originally envisioned it would be. There have been pluses and minuses and my life has been altered but also enhanced in many ways. Mainly I have had a chance to gain valuable insight and a perspective that neither Deaf nor Hearing could truly understand. It is as if I am a scientist in a lab looking in on the Deaf and Hearing worlds through a microscope lens.
Although, like the scientist in the lab, it becomes challenging to interact with these two entities at times because you really belong fully to neither.
First let me address the challenges I have encountered when dealing with the hearing culture as a late deafened adult. Please do not be offended but understand that these are true observations and difficulties I have encountered with the hearing. I am heavily surprised by the ignorance of people! I am sure that I too was just as ignorant when I was hearing but I hope to God I never offended a deaf person in the ways I have felt offended or know a Deaf person would find offensive!
Here are my two biggest irritations and if you know me please do not ask me these things:
Do you read lips? (then proceed to blab when I informed you that I would like you to please write down what you are saying)
Do you need an ASL interpreter? (or don't ask but just assume that I am completely fluent)
First of all hearing people, let's assume that I was born deaf. Even then with the very best of oral training, realistically I would only be able to read about 20-30% of spoken conversation on the lips. Most words cannot be seen! When I still had residual hearing in the spring I scored remarkably high with a 44% in speech reading capability while my speech discrimination without reading lips was 0%. The reason mine was higher is because I was born hearing and could hear spoken words for so long! I took whatever residual hearing I had and combined it with the shape of a speakers mouth to try to decipher what they were saying. It was very frustrating! Now however, I do not have any residual hearing and speech reading is much more difficult. It is mostly a game of predictability. For instance, when I go to the same grocery store and know the people I know what they are going to say or ask me because it is always the same! "How are you today?" "Do you have your club card?" "What is your phone number?" "Do you want paper or plastic?" "Would you like help out?" "Thanks and have a nice night or day."
Notice that all those statements are rather short, sweet and are obvious. They are not babbling about some story of a topic I have no idea about! Speech reading also depends on many other factors such as whether you know the person well and have read their lips before (like my husband), if the person has a mustache, if the person does not move their lips much, if the person has nice big lips and big lip movement, and for hard of hearing people it makes it much more difficult when there are background noises and distractions (restaurants and screaming kids are very stressful situations for hard of hearing people).
Sure we have all heard of Deaf people with an amazing lip reading (accurately termed "speech reading") ability but that is like on TV. So do you believe in everything you see in the media? I have heard of one woman who claims 80-90% speech reading capability but that is really a true gift and oddity. How common are geniuses born in our society? There you have it then!
Okay, now for those who are hearing I want you to consider for a moment that you have instantly become deaf. You just woke up one morning and lost your hearing. Now tell me that you would like an ASL interpreter for your morning meeting at work. Then sit there completely lost, frustrated, and confused as if you are trapped in a dang box for that hour with no way out! Sounds ridiculous doesn't it? Yet you would not believe how many hearing people have assumed I needed an ASL interpreter when they have been informed I just lost my hearing. Or, people assume I am fluent and will enjoy myself at an ASL interpreted performance where I cannot hear squat just because I am deaf and took a few asl classes
News flash, for those that do not know, ASL is a FOREIGN LANGUAGE! It is NOT merely english signed on the hands. It has a completely different grammatical structure just as French, Spanish, and German do when compared to English. Also, there are many bits of grammar thrown out in ASL such as prepositions and things like "The, And, A, etc.". Instead of using those words, signers change the movement and dramatization of their sign. So even after having 5 ASL classes I still have a long way to go. Due to the heavy influence and usage of English in my level of education, I tend to use more of what is called "PIDGIN" sign which is neither ASL nor English. It is sign used in grammatical English order but more or less fragments to express an idea. Sign Language in English grammatical order is called SEE "Signing Exact English" and it is quite laborious and irritating. So think of it this way, if you have ever taken a foreign language, were you completely fluent and proficient in the language within a year, 2 years? Probably not unless you moved to the country and completely immersed yourself in the culture.
Okay here is one more gripe before I touch on the positive side. This is more of an inconvience to me that I have to learn to deal with. When I was hearing I was afforded so many priveledges and opportunities that I really was somewhat unaware of. I knew they existed but did not realize the priveledge that came with it. All over it seems like you can go to some kind of seminar or workshop on anything that picques your interest....from hobbies such as pottery and yoga to medical education seminars and environmental classes at zoos. Often I will forget about being deaf and think of how I might like to attend something like that. However, now I always have to stop and think. If it is some form of lecture I will not be able to hear and I will need a real time captioner which can be costly. If the organization is nonprofit, small, or a local community center they are not obligated to provide accommodations. That really stinks! So all these things I would have liked to attend and learn about I can no longer participate in unless it is something visual and someone can write some things down for me. Depending on someone to write things down does not always work well either.
However, there have been seminars and workshops that I have attended for my career while as a graduate student and the places did fall under the ADA law of accommodation. Yet often I find these organizations are not aware of this and it is a big hassle to try to get what I need. I find I have to prepare months in advance because it often involves a great deal of leg work on my part researching the organization and law and trying to find somebody available to caption for me.
At one point before I went deaf and could understand somewhat with an FM system, I went to a National Biology Teacher's Conference where they failed me. For months I tried setting up a captioner but the conference was out of state and I only knew of captioners in state. Plus the main organization running the conference was based out of the east coast and nobody was returning my messages until 2-3 days prior to the conference! I knew at that point there was no way they were going to get a captioner like I had requested. So they lined up to have room FM systems installed. When I got there they provided the wrong equipment. Then I had to wait around and miss some seminars I wanted to attend while they hunted for what I really needed (which I did state before attending!). It turns out that none of the equipment they provided worked! Luckily I had my own fm system and I mainly went to labs instead where I could work with a partner who wrote things down for me on what we were doing. But the situation severely limited what I could participate in and had access to as compared to my hearing peers.
Therefore, when I want to go somewhere, it has to be totally planned and thought out in advance. I cannot merely show up on the spur of the moment as was my style as a hearing person. Once I am committed I cannot back out. Twice now, I have gone to job interviews over the summer where I requested a real time captioner and the employer provided an asl interpreter instead.
OKAY! NOW ON TO THE LIGHTER SIDE OF THINGS! I believe in bursting your bubble first and then filling your bucket! LOL ;o)
The one thing I think I have really gained through the deafness is more of a sense of focus whereas I was more easily distracted before. This really helped me through graduate school because there was so much reading and writing. I have really learned to appreciate reading alot more. Sure I love music! In fact that was probably one of my biggest time wasters! I would be listening to it all the time and was the type of person that had to get the lyrics and follow along. In my undergraduate program I remember sitting around and listening to lots of music when I should have been putting my nose to the grindstone in my studies. It was a rare moment that I was not listening to music. In high school I would listen to headphones on the way to cross country and track meets and I listened to my stereo throughout the whole night while sleeping.
Music is great but I think in many ways it can contribute to depression and unmotivation (I am not talking about performers as they are very motivated) depending upon your selection.
Another thing I have learned is that often alot of spoken conversation can be very meaningless and mundane. I first learned this lesson on a geology field trip where everyone was sitting around the campfire telling jokes. I was rather irritated because I could not be included. So I thought about it for a long time and then realized that I really was not missing out on anything important really (maybe some comradery among fellow geology students??). For a long time it bothered me not to get every bit of conversation or what was said. Now in a lecture this still holds true because it is informative material but for everyday conversation I find what most people choose to talk about is really irrelevant. Therefore, I have sort of learned to not waste time with such matters and to occupy myself with more important things or people who want to communicate with me through writing or signing.
In addition to the focus, I must say that it has been kind of nice to filter out the noises that the hearing become very irritated or distracted by. Before I could just shut off my hearing aide. For example, during grad school our small lounge was packed and noisy at lunch time. Yet I was able to kick back and take a nap or study without any problem. Also, sometimes when you are in a store or restaurant somebody's kid starts screaming at the top of their lungs an ear piercing scream. Ahh no longer! I can continue to enjoy my shopping or dinning pleasure in silence. I can now also enjoy noisy establishments whereas it becomes challenging for the hearing! And it is great to hold a conversation in sign while eating where as you have to stop if you are talking.
In many ways it is rather peaceful and a relief. I feel rather lucky having been a hearing person before because I know how people are supposed to be treated and now that I am deaf I see how often Deaf people are mistreated. This makes me angry but also very assertive and that is probably what surprises people when I speak up and I am defiant! Recently I had an opthamalogy clinic deny me accommodations for a serious medical consultation. The dang boob wanted me to come in for an evaluation of my disability and how I can communicate without an accommodation before he would give me an eye exam. Pardon my french, but that is the most assining thing I have ever heard! I asked if they even ever had deaf clients before. Surprisingly they did and the patients paid for their own accommodations which was totally wrong and against the law! They expected me to do the same but I would not cave in so I sought a more appropriate and better doctor anyhow. I am still in the process of filing a complaint on that organization with the human rights commission.
Let's switch back the music. I was really sad for some time about losing the music because when I had cancer back in 1992/1993 I used to listen to music to meditate and visualize the tumors shrinking. Now I have felt kind of stuck and often my life is very noisy because I have something called tinnitus (which is ringing of the ears and takes on different annoying sounds at times). Since I could not listen to music I did not know how I could get into a meditative mode and envision my tumors shrinking. It made me feel very trapped and not in control of what was going on.
I was feeling this way about a month ago when I opened a fabulous poetry book that my mother gave to me by Helen Steiner Rice - "A Collection of Love Gifts". Surprisingly the book opened to a page with a poem titled "The Peace of Meditation". I will include it in a seperate post for those who just want to read the poem. After reading the poem, I realized that I have had this gift in me all along to reach the silence and and deeply contemplate or absorb thought. While growing up I used to always take a walk on our back property in the woods to my favorite spot. At the edge of a hill overlooking a lowland mossy area, the afternoon/evening sun would shine through the tall hemlock trees just perfectly. It was in this spiritual place that I used to sit, think and pray in silence. I had forgotten about the peace and solitude I achieved there until this poem reawakened me.
So for now I will leave you with an additional post of the poem and it may clarify how I am coming to embrace this deafness.
Thursday, March 03, 2005
I met with Dr. Hamilton at the University of Washington. Seeing as it was my first appointment, I had to go through a series of tests given by a real nice resident doctor (Dr Yossef). It is good thing that I was able to get in earlier (my original appointment was not until April 26th). But after hearing of my currents symptoms from my neurologist Dr. Peterson, the opthamalogist wanted to get me in as soon as possible.
Not surprising to the doctors but quite a shock to me is that I was having swelling of the optic nerves. Apparently this is not uncommon for brain tumors the size of mine. The tumors are quite large and indenting the brain stem. So apparrently something is pressing on the optic nerves somewhere but was not detectable on an MRI. They discovered the swelling buy looking at the back of my eyeballs when they were dialated.
The symtoms I was having are as follows:
Lightheadedness and tunnel vision (or blackening of my field of vision) - for the past week
Loss of vision in the right eye for a few minutes upon awakening - tuesday morning
Occassional blur spot in my right eye - intermittent
Light flashes in darkness - 2 episodes when waking in early morning (between 5 and 6 am)
Double vision while driving or reading captioning on tv - 4 to 5 episodes
Vomiting - 1 epidsode in past 3 weeks
Nausea - intermittent but able to handle
Migrane Headaches/head pressure (past 3 weeks) - 2 a day (only remedied by Excedrin)
Ghost images and trailers while driving at night - has occured since October
Thus the determination is that my optic nerves are swelling due to intracranial pressure. The doctors here have decided to put me on 4 mg a day of the steroid Decadron and 500 mg a day of Diamox. I do not know anybody who has taken Diamox but I have read that this medicine is commonly used for climbers who succumb to altitude sickness and glaucoma patients.
Our hope is that these medications will reduce the swelling and prevent the need for a shunt that would relieve pressure in the brain. I have a friend with NF2 who experienced high intracranial pressure and optic nerve swelling (papillodema) 2 years following gamma knife radiosurgery. Due to the severity of the swelling, he needed an emergency brain surgery which resulted in a stroke during surgery followed by a 3 week coma. They gave him a shunt but he does not remember anything about it as he was in a coma at the time.
So lets hope these drugs do their job!