another anniversary! it is 3 months today that i had the gamma knife radio surgery. i have improved quite a lot, but i still have a long way to go. i am feeling a bit disillusioned since my regression, but i know i must just persist. this is a test of my stamina. another 3 months before my first MRI, and hopefully i can go back to work. but 12 - 18 months for full recovery. i will do it because i have to.
Saturday, 12 May 2007
Friday, 11 May 2007
Ooops!
May 3 2007 - Present
Tunnel
thursday, May 3 was a friend's birthday. "I'm just having a quiet dinner party", well then of course i could handle it. i was doing so well after all - i had the strength of ten men! so, we went to the dinner party.
the excursion was doomed from the start, our taxi driver took us the wrong way down a 'one way' street- we didn't know the exact adress and didn't understand his question about which route to take. no one's fault, but it did mean that we had to get out of the taxi and walk quite a distance to her flat and then climb the many stairs to the 5th floor. i was already starting to feel woozy and ill and i should've just called it quits. but i was so determined to be normal again, i so badly wanted to join normal society that i ignored the warning signs. obviously i hadn't learnt my lesson, i was still overdoing things and not listening to my body (Worse).
we got to the flat and it was great to be there and she was very happy that we had come. but, i was useless most of the time, rendered catatonic by the music, the cigarette smoke and the white noise of many voices all talking at once. of course, i tried to shake myself out of my 'rabbit in the headlights' phase and would force myself to have brief conversations with people, but then my brain would just shut down again. i spent most of the evening staring blankly into space, trying to make sense of all the commotion around me. i even had some wine i was so desperate to join in. it was good to be with friends and talk, but it was all just a bit too hectic for me.
friday, May 4 i was feeling a bit unbalanced and tired from the night before, but i walk every day - so i went for a walk. now, i don't walk far, but i end up taking so many photographs of every little thing that i am often outside for over an hour. by the weekend, i was having convulsions again! i hadn't had a convulsion in 3 weeks and now i felt like i was back to where i had started. it was very scary and depressing for colin and i. we had forgotten how to deal with the convulsions and we had been so cock-sure of my amazing progress. monday, May 7 i took things very easy. symptoms that had all but disappeared started returning, nausea, frequent muscle spasms, vertigo, imbalance and blurred vision.
tuesday, May 8 i saw dr. chung, who was happy with my progress. colin and i were so happy that we decided to go for dinner, vietnamese. we took the wheelchair, but after the visit to the hospital, dinner at a restaurant was too much. i had two convulsions that night. i was broken, i hadn't improved, i was backsliding. the reality of how long it is really going to take me to recover came crashing down on me. i had had 3 good weeks and thought i was cured, but now i know - 12 -18 months. i have had to start getting up slowly again, no more photo taking on my little walks, if i go for a walk. i am an invalid again. so this is what i have to look forward to; painstaking, often unnoticeable improvement, torturously slow, boring, frustrating, depressing recovery. and to top it all off, i wet the bed on wednesday night (May 9). i don't know why my brain couldn't wake me up, i hadn't taken a lot of drugs that night. i just hope it doesn't happen again.
i know there is 'a light at the end of the tunnel', but the tunnel is just so damn long that i have trouble seeing it.
Tunnel
thursday, May 3 was a friend's birthday. "I'm just having a quiet dinner party", well then of course i could handle it. i was doing so well after all - i had the strength of ten men! so, we went to the dinner party.
the excursion was doomed from the start, our taxi driver took us the wrong way down a 'one way' street- we didn't know the exact adress and didn't understand his question about which route to take. no one's fault, but it did mean that we had to get out of the taxi and walk quite a distance to her flat and then climb the many stairs to the 5th floor. i was already starting to feel woozy and ill and i should've just called it quits. but i was so determined to be normal again, i so badly wanted to join normal society that i ignored the warning signs. obviously i hadn't learnt my lesson, i was still overdoing things and not listening to my body (Worse).
we got to the flat and it was great to be there and she was very happy that we had come. but, i was useless most of the time, rendered catatonic by the music, the cigarette smoke and the white noise of many voices all talking at once. of course, i tried to shake myself out of my 'rabbit in the headlights' phase and would force myself to have brief conversations with people, but then my brain would just shut down again. i spent most of the evening staring blankly into space, trying to make sense of all the commotion around me. i even had some wine i was so desperate to join in. it was good to be with friends and talk, but it was all just a bit too hectic for me.
friday, May 4 i was feeling a bit unbalanced and tired from the night before, but i walk every day - so i went for a walk. now, i don't walk far, but i end up taking so many photographs of every little thing that i am often outside for over an hour. by the weekend, i was having convulsions again! i hadn't had a convulsion in 3 weeks and now i felt like i was back to where i had started. it was very scary and depressing for colin and i. we had forgotten how to deal with the convulsions and we had been so cock-sure of my amazing progress. monday, May 7 i took things very easy. symptoms that had all but disappeared started returning, nausea, frequent muscle spasms, vertigo, imbalance and blurred vision.
tuesday, May 8 i saw dr. chung, who was happy with my progress. colin and i were so happy that we decided to go for dinner, vietnamese. we took the wheelchair, but after the visit to the hospital, dinner at a restaurant was too much. i had two convulsions that night. i was broken, i hadn't improved, i was backsliding. the reality of how long it is really going to take me to recover came crashing down on me. i had had 3 good weeks and thought i was cured, but now i know - 12 -18 months. i have had to start getting up slowly again, no more photo taking on my little walks, if i go for a walk. i am an invalid again. so this is what i have to look forward to; painstaking, often unnoticeable improvement, torturously slow, boring, frustrating, depressing recovery. and to top it all off, i wet the bed on wednesday night (May 9). i don't know why my brain couldn't wake me up, i hadn't taken a lot of drugs that night. i just hope it doesn't happen again.
i know there is 'a light at the end of the tunnel', but the tunnel is just so damn long that i have trouble seeing it.
Thursday, 10 May 2007
Better
April 18 - May 2 2007
Taipei green and grey
and then, miraculously, from april 18th into May i had NO convulsions! of course i still suffered from the myoclonic jerks (muscle spasms). so my eyes would roll around in my head a bit, or my neck would stiffen and shake or my hand would shake, but only for a minute at the most and then it would stop. the nausea and the vertigo also seemed to ease up. i was able to get up faster, i didn't have to do the '80 year old granny' move and wait when i wanted to get outta bed or off the couch. i still had terrible headaches and that weird crawling pressure in my brain, my ears were still popping, but i felt closer to normal than i had since november 2006, 6 months ago. normal felt sooo good.
dr. tai was very happy and said i should have more confidence in myself and in the strength of my body. he suggested i start taking walks around my neighbourhood. so i did, with dina in tow. the first few minutes would always feel weird, vertigo, disorientation, like my head was gonna spin off my body. all the noise and light was shocking at first, but if i persevered for a few minutes it would get better. my brain slowly learnt to deal with all the extra information while still being able to control my legs. i walked like a drunken, 90 year old man, but i was walking outside! this lifted my spirits incredibly. i wasn't an invalid anymore! i was starting to become ME again! at first i just did 5 - 10 minute walks, then by the time i got up the stairs to our 3rd floor flat i was panting and would pass out from exhaustion.
but i got fitter fast, i was amazed by the outside world. i hadn't seen it in so long. i started noticing the weird nooks and crannies that had always been around my neighbourhood. but i had always been too busy rushing somewhere else to really LOOK. i was and am inspired to photograph these weird images in my neighbourhood. Taipei is a crazy and generally ugly city, but it is full of the most amazing textures, weird combinations of modern and old, nature and man-made and i was/am seeing it with new eyes. i take on average 100 photos every walk - some excellent and some get deleted, but i am very proud of them and that is why i put the link to my web album on my blog. i also discovered that the wheelchair makes an excellent 'dolly' for the camera, so colin and i used it to take some footage of taipei. i learnt how to edit movies and we made a music montage, of course to a Taiwanese band (Chicken Rice), of our last two years in taipei together. this i put up on 'youtube' so that all our family and friends, who are so horribly far away, could watch it.
Going out
i even went to our local pub, 'roxy junior' on a friday night, April 27th with colin and some friends. it was a beautiful evening and we sat outside (away from the noise and the smoke) and even though i drank a soda and was only there for two hours, it felt really good. just to be outside and part of the human race. communicating with people outside of my sickbed and the confines of my flat. i know it made colin very happy too. he goes out drinking with his friends sometimes, but i know he really wants me to be able to come along. we always used to have so much fun partying and drinking together. we both want our old relationship back, where we used to drink red wine and watch movies all night. where we used to have sex. yes, i have to admit this, we can't have sex. the rush of blood and adrenalin to my brain would be too much for me, it would definitely cause a convulsion, maybe even a stroke. i can't even have hot baths because they increase the blood flow too much.
so i was/am happier than i had been in a long time, i felt positive, strong and energetic. i was/am using my free time constructively and finding my creative side again, which i had lost somewhere between work and saving money. so, good things come from bad experiences. i have found that there is far more to me than 'the sexy, party girl', 'the eccentric world traveller'. my life is not over just because i can't drink, dance and party. i found i had some friends where i didn't expect them, i wasn't a slave to the cigarettes, i didn't need to drink to have fun and i proved dr. chung wrong; i didn't need 12 - 18 months to recover, i was speeding ahead of him. "Eat my dust! Ha ha ha!"
but, "pride comes before the fall ..."
Taipei green and grey
and then, miraculously, from april 18th into May i had NO convulsions! of course i still suffered from the myoclonic jerks (muscle spasms). so my eyes would roll around in my head a bit, or my neck would stiffen and shake or my hand would shake, but only for a minute at the most and then it would stop. the nausea and the vertigo also seemed to ease up. i was able to get up faster, i didn't have to do the '80 year old granny' move and wait when i wanted to get outta bed or off the couch. i still had terrible headaches and that weird crawling pressure in my brain, my ears were still popping, but i felt closer to normal than i had since november 2006, 6 months ago. normal felt sooo good.
dr. tai was very happy and said i should have more confidence in myself and in the strength of my body. he suggested i start taking walks around my neighbourhood. so i did, with dina in tow. the first few minutes would always feel weird, vertigo, disorientation, like my head was gonna spin off my body. all the noise and light was shocking at first, but if i persevered for a few minutes it would get better. my brain slowly learnt to deal with all the extra information while still being able to control my legs. i walked like a drunken, 90 year old man, but i was walking outside! this lifted my spirits incredibly. i wasn't an invalid anymore! i was starting to become ME again! at first i just did 5 - 10 minute walks, then by the time i got up the stairs to our 3rd floor flat i was panting and would pass out from exhaustion.
but i got fitter fast, i was amazed by the outside world. i hadn't seen it in so long. i started noticing the weird nooks and crannies that had always been around my neighbourhood. but i had always been too busy rushing somewhere else to really LOOK. i was and am inspired to photograph these weird images in my neighbourhood. Taipei is a crazy and generally ugly city, but it is full of the most amazing textures, weird combinations of modern and old, nature and man-made and i was/am seeing it with new eyes. i take on average 100 photos every walk - some excellent and some get deleted, but i am very proud of them and that is why i put the link to my web album on my blog. i also discovered that the wheelchair makes an excellent 'dolly' for the camera, so colin and i used it to take some footage of taipei. i learnt how to edit movies and we made a music montage, of course to a Taiwanese band (Chicken Rice), of our last two years in taipei together. this i put up on 'youtube' so that all our family and friends, who are so horribly far away, could watch it.
Going out
i even went to our local pub, 'roxy junior' on a friday night, April 27th with colin and some friends. it was a beautiful evening and we sat outside (away from the noise and the smoke) and even though i drank a soda and was only there for two hours, it felt really good. just to be outside and part of the human race. communicating with people outside of my sickbed and the confines of my flat. i know it made colin very happy too. he goes out drinking with his friends sometimes, but i know he really wants me to be able to come along. we always used to have so much fun partying and drinking together. we both want our old relationship back, where we used to drink red wine and watch movies all night. where we used to have sex. yes, i have to admit this, we can't have sex. the rush of blood and adrenalin to my brain would be too much for me, it would definitely cause a convulsion, maybe even a stroke. i can't even have hot baths because they increase the blood flow too much.so i was/am happier than i had been in a long time, i felt positive, strong and energetic. i was/am using my free time constructively and finding my creative side again, which i had lost somewhere between work and saving money. so, good things come from bad experiences. i have found that there is far more to me than 'the sexy, party girl', 'the eccentric world traveller'. my life is not over just because i can't drink, dance and party. i found i had some friends where i didn't expect them, i wasn't a slave to the cigarettes, i didn't need to drink to have fun and i proved dr. chung wrong; i didn't need 12 - 18 months to recover, i was speeding ahead of him. "Eat my dust! Ha ha ha!"
but, "pride comes before the fall ..."
Wednesday, 9 May 2007
Recovery
April 1 - April 17 2007
i continued to have strong, freaky convulsions in April, but they were less frequent and shorter; 40 minutes instead of 3 hours. i was also still experiencing weird changes in symptoms, like for about two weeks i had trouble breathing and terrible chest and back pain, which led dr. tai to order an x-ray of my spine - nothing there! then it just disappeared for no apparent reason. or my hand and arm would start shaking for a few minutes every day and then that would also disappear. i became almost detached from my body and all the weird things it was doing, i had given up trying to control it and had just accepted that i was a spastic. except when i had the terrible tonic part of my convulsions. my neck would stiffen and bend backwards, actually painfully digging into my back. this was especially scary as i could feel a pain, a tightening, an electric shock in my brain. in fact, i think it is the alien, crawling pressure in my brain that scares me the most. i can feel that something bad is happening and it feels life-threatening.
dina was always calm during my convulsions, she would just give me my extra clonazepam and xanax and then just sit with me until my spasms stopped. colin is not so calm, he gets scared and upset watching his girlfriend suffering so much. often he panics and just keeps shoving medication into my mouth and almost starts shouting. he also tries to hold my body when it is shaking and that is actually the worst thing you can do for someone experiencing spasms, but he just wants it to stop.
i was also still housebound and would start wobbling and falling over if i walked or did too much around the house too quickly. i felt like an old lady. i had to get up slowly, and in stages from a seated or lying position to give my brain time to 'catch up' with the orientation of my body. i only left the house to see one of my two doctors and then i would use a hospital wheelchair. but i could see slow improvement. even if the convulsions weren't less violent i was now only having 2 or 3 a week, as apposed to 1 or 2 a day. and i could start seeing friends.
people came in ones or twos to visit. at first i would feel very tired quickly and become short of breath from all the talking, but i quickly regained my 'chatting fitness'. i only had trouble if there was more than one conversation and music going at the same time, then i would start to feel dizzy and confused. i also experienced this when going outside, all the movement and sound of a busy taipei road would make me feel disoriented. my brain still wasn't quite up to processing so much information so quickly. i would just stare blankly into space, unable to focus on anything, especially since i was still having trouble focusing my eyes and still couldn't read a book. colin says that when the sights and sounds get too much i look like 'a rabbit caught in headlights'. i feel like one too.
i continued to have strong, freaky convulsions in April, but they were less frequent and shorter; 40 minutes instead of 3 hours. i was also still experiencing weird changes in symptoms, like for about two weeks i had trouble breathing and terrible chest and back pain, which led dr. tai to order an x-ray of my spine - nothing there! then it just disappeared for no apparent reason. or my hand and arm would start shaking for a few minutes every day and then that would also disappear. i became almost detached from my body and all the weird things it was doing, i had given up trying to control it and had just accepted that i was a spastic. except when i had the terrible tonic part of my convulsions. my neck would stiffen and bend backwards, actually painfully digging into my back. this was especially scary as i could feel a pain, a tightening, an electric shock in my brain. in fact, i think it is the alien, crawling pressure in my brain that scares me the most. i can feel that something bad is happening and it feels life-threatening.
dina was always calm during my convulsions, she would just give me my extra clonazepam and xanax and then just sit with me until my spasms stopped. colin is not so calm, he gets scared and upset watching his girlfriend suffering so much. often he panics and just keeps shoving medication into my mouth and almost starts shouting. he also tries to hold my body when it is shaking and that is actually the worst thing you can do for someone experiencing spasms, but he just wants it to stop.
i was also still housebound and would start wobbling and falling over if i walked or did too much around the house too quickly. i felt like an old lady. i had to get up slowly, and in stages from a seated or lying position to give my brain time to 'catch up' with the orientation of my body. i only left the house to see one of my two doctors and then i would use a hospital wheelchair. but i could see slow improvement. even if the convulsions weren't less violent i was now only having 2 or 3 a week, as apposed to 1 or 2 a day. and i could start seeing friends.
people came in ones or twos to visit. at first i would feel very tired quickly and become short of breath from all the talking, but i quickly regained my 'chatting fitness'. i only had trouble if there was more than one conversation and music going at the same time, then i would start to feel dizzy and confused. i also experienced this when going outside, all the movement and sound of a busy taipei road would make me feel disoriented. my brain still wasn't quite up to processing so much information so quickly. i would just stare blankly into space, unable to focus on anything, especially since i was still having trouble focusing my eyes and still couldn't read a book. colin says that when the sights and sounds get too much i look like 'a rabbit caught in headlights'. i feel like one too.
Tuesday, 8 May 2007
Medication
Feb 2007 - Present
as you can see from my previous post. i was experiencing just about every type of spasm there was but with one big difference. i was always conscious and the convulsions would last for hours, not minutes. this had the doctors completely stumped, but also fascinated. they had never seen this before so a lot of the time they were just guessing at the correct treatment/drugs. trying out different combos until they found something that worked. i think that in the end it was the gamma knife that started making the difference, not the medication - although of course the medication helped.
colin and i went back and forth between dr. chung and dr. tai, desperate. nothing's working! i'm not getting better! dr. chung counseled patience, he said that "right now it is as if you never had the gamma knife, the symptoms will get worse before they get better. maybe in 6 months you will start to see some improvement". 6 months! august, the date of my first follow-up MRI. dr. chung estimated that it would/will take a year and a half for my AVM to be completely obliterated. eventually the AVM will be too small to see on an MRI and i will have to have further angiographies (ugh!) to ensure that it disappears completely.
so we turned to dr. tai, the medication is not helping. i had been taking 15 mg of baclofen (anti-convulsant), 2 mg of clonazepam (anti-seizure) and 2400 mg of piracetam (brain metabolism strenthener) daily and was told just to take more clonazepam if i had bad convulsions. i remember one night, monday March 12th, i had been having bad convulsions for days and i ended up taking 8 mg of clonazepam in one day, desperately trying to control my body. that turned out to be too much and i woke up in the middle of the night having wet the bed. i had taken a lot of medication to switch my brain off and it had worked. my brain couldn't even wake me up to go to the bathroom.
that wasn't helping, so dr. tai upped dosages and added new drugs. currently i am taking 20 mg baclofen, 4 mg clonazepam, 2400 mg piracetam, 200 mg phenytoin and if the convulsions get bad, 0.5 mg xanax. i also take as many headache tablets as i need. taking all these drugs means that i have to have monthly blood tests to check my liver and kidney function and the phenytoin levels in my body. all the drugs in my system put a huge strain on my liver and kidneys, another reason not to drink. if i had one glass of wine, my liver would just 'pack up'. the phenytoin can be especially dangerous. if too much 'builds up' in your system it can cause seizures, weaken bones and lower white blood cell count, leaving your body less able to fight off future disease.
the other interesting thing about all these drugs is that you can't just suddenly stop taking them, you have to be weaned off them slowly. your body becomes so dependent on them that you form a physical addiction. if i just stopped taking the clonazepam, baclofen or phenytoin it would cause all sorts of crazy side effects like seizures, hallucinations, vomiting, depression etc. etc. so, i think i will leave it up to my doctors to decide what happens with my drug intake. although ... hallucinations could be interesting ;-)
as you can see from my previous post. i was experiencing just about every type of spasm there was but with one big difference. i was always conscious and the convulsions would last for hours, not minutes. this had the doctors completely stumped, but also fascinated. they had never seen this before so a lot of the time they were just guessing at the correct treatment/drugs. trying out different combos until they found something that worked. i think that in the end it was the gamma knife that started making the difference, not the medication - although of course the medication helped.
colin and i went back and forth between dr. chung and dr. tai, desperate. nothing's working! i'm not getting better! dr. chung counseled patience, he said that "right now it is as if you never had the gamma knife, the symptoms will get worse before they get better. maybe in 6 months you will start to see some improvement". 6 months! august, the date of my first follow-up MRI. dr. chung estimated that it would/will take a year and a half for my AVM to be completely obliterated. eventually the AVM will be too small to see on an MRI and i will have to have further angiographies (ugh!) to ensure that it disappears completely.
so we turned to dr. tai, the medication is not helping. i had been taking 15 mg of baclofen (anti-convulsant), 2 mg of clonazepam (anti-seizure) and 2400 mg of piracetam (brain metabolism strenthener) daily and was told just to take more clonazepam if i had bad convulsions. i remember one night, monday March 12th, i had been having bad convulsions for days and i ended up taking 8 mg of clonazepam in one day, desperately trying to control my body. that turned out to be too much and i woke up in the middle of the night having wet the bed. i had taken a lot of medication to switch my brain off and it had worked. my brain couldn't even wake me up to go to the bathroom.
that wasn't helping, so dr. tai upped dosages and added new drugs. currently i am taking 20 mg baclofen, 4 mg clonazepam, 2400 mg piracetam, 200 mg phenytoin and if the convulsions get bad, 0.5 mg xanax. i also take as many headache tablets as i need. taking all these drugs means that i have to have monthly blood tests to check my liver and kidney function and the phenytoin levels in my body. all the drugs in my system put a huge strain on my liver and kidneys, another reason not to drink. if i had one glass of wine, my liver would just 'pack up'. the phenytoin can be especially dangerous. if too much 'builds up' in your system it can cause seizures, weaken bones and lower white blood cell count, leaving your body less able to fight off future disease.
the other interesting thing about all these drugs is that you can't just suddenly stop taking them, you have to be weaned off them slowly. your body becomes so dependent on them that you form a physical addiction. if i just stopped taking the clonazepam, baclofen or phenytoin it would cause all sorts of crazy side effects like seizures, hallucinations, vomiting, depression etc. etc. so, i think i will leave it up to my doctors to decide what happens with my drug intake. although ... hallucinations could be interesting ;-)
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