Since my last entry, I've been officially diagnosed with Partial Complex seizures by EEG, and started another anti-epileptic since gabapentin wasn't controlling them at all. My new neurologist says I'm taking enough of it to knock out an elephant. Unfortunatly I'm not an elephant... The seizures were a complete surprise to everyone but me. Doctors can't seem to trust that I know when something's up with my own body.
I've had another nerve block for the occipital nerve pain which seemed to make the pain worse, and met with a pain management specialist who did ANOTHER nerve block, this time using x-rays to ensure proper injection placement. So far no luck.
Trying a third type of medicine - nucytna - which also seems to have no effect.
Right after surgery I was so happy to be rid of my headaches but this nerve pain has taken over and is almost as bad - like I've swapped one pain for another.
Sunday, October 23, 2011
Friday, September 9, 2011
Exploding Head Syndrom!
Okay, so the past two nights I've awoken to weird sounds at exactly 5:28am. The first night was a high pitched choir type sound, and the second night was the sound of paper ripping right in my ear. Both times I awoke quite alarmed and the sound persisted for several seconds after I woke and bolted up in bed. Peter and the dog slept peacfully until I turned the light on to look for the culprit. Yesterday I had the sensation of cigar ash in my nose and throat and I couldn't get rid of it. It was as though I was 10 again and my brother had paid me $5 to lick my dads ash tray. It was vivid and intense and no matter what I ate, drank, or where I went, I couldn't escape the taste/smell.
So. The first thing with the sounds I found through google searches, to be 'Exploding Head Syndrom'. Fun name. An auditory hallucination when a person is in an in-between state of sleep and being awake. Makes sense. Exploding head syndrom itself is thought to be disturbing, though completely harmless. Although - one possible cause of it is temporal lobe epilepsy. Upon some googling and wikipediaing of this, I find that the cigar thing (and a whole bunch of other symptoms I've been having), can be explained by this.
On tuesday I had gone to my doctor and had my neurontin decreased slighly because it was giving me gastric upsets. Upon further research into the drug, I find that missing a dose, stopping it, changing it .etc can give a person with no prior history of epilepsy seizures.
So, moral of the story - don't mess with anti-epileptic drugs.
Waiting on my doctor for what to do next, seeing if further testing is needed, and waiting to see if we shall proceed with my second nerve block since the first one was only minorly successful.
So. The first thing with the sounds I found through google searches, to be 'Exploding Head Syndrom'. Fun name. An auditory hallucination when a person is in an in-between state of sleep and being awake. Makes sense. Exploding head syndrom itself is thought to be disturbing, though completely harmless. Although - one possible cause of it is temporal lobe epilepsy. Upon some googling and wikipediaing of this, I find that the cigar thing (and a whole bunch of other symptoms I've been having), can be explained by this.
On tuesday I had gone to my doctor and had my neurontin decreased slighly because it was giving me gastric upsets. Upon further research into the drug, I find that missing a dose, stopping it, changing it .etc can give a person with no prior history of epilepsy seizures.
So, moral of the story - don't mess with anti-epileptic drugs.
Waiting on my doctor for what to do next, seeing if further testing is needed, and waiting to see if we shall proceed with my second nerve block since the first one was only minorly successful.
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| Incision two weeks ago |
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| Incision today |
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| Random trivia: After surgery my eyes had started to develop a brown ring that has since gone away. |
Wednesday, August 17, 2011
Staples Out!
I got my Staples out yesterday and it was such a relief. The nurse said it may zing and to yell obscenties if I must, but I just sighed in relief like when you've been holding you bladder for hours and finally get to go. They don't itch anymore and I can brush my hair without catching on them.etc Yay! Also - I can pull my hair back over them and have them be hardly visible! I'm on my way to healing. I have an occipital nerve block procedure scheduled for next Tuesday, so hopefully that will extinguish that pain and I'll be feeling so much better and be so much more pain free.
Monday, August 15, 2011
Photo update
My hair is growing back quickly, and I get my staples out tomorrow. Just in time too as they're getting very red and angry looking. In the mean time till I can get that occipital nerve block my doctor gave me a numbing shot in the general area. It helps the pain when I'm just being, but still hurts when I touch it (duh, don't touch it), lie on it, or turn my head to the right. It hurt somewhat, but could have been worse. I'm going through meds like crazy. I've almost gone through 80mg of Valium in the last week, and am going through Neurontin even faster. Need refills. As I've been going through so many meds, I'm tired ALL the time. Ugh. So tired I'm going to end this post already, not that it matters as I have only 2 readers, so goodnight Dad and Aunt Terry.
Thursday, August 11, 2011
Occipital Nerve Pain
So I went to see the nurse practitioner about this horrible scalp-pulling pain. She poked my head a bit and concluded that I'm suffering from 'left occipital nerve pain'. Basically when they cut through my scalp they had to sever several nerves in the process. Most of these were of little consequence and have left my head just feeling numb like when your feet fall asleep from sitting too long. One of the nerves however, was my occipital nerve, which, while I don't know what it does, is a big nerve that curls around the head like a rams horn. The result of this is when I move my head that sliced nerve gets aggravated and it feels like some one's trying to scalp me. I'm considering a nerve block injection (seeing if insurance even covers it first), which has debate over how much it works. For some people it works, for others it doesn't, but unanimously, it hurts like hell. For now I'm trying Neurontin, a seizure medication that also works for nerve pain, and hoping that it helps and I don't even need the nerve block.
Aside from that, the right hand muscles in my neck keep spasming. I have no appetite, probably from the enormous amount of narcotics I'm taking scheduled. Chewing hurts. Laying down hurts. When I lay on the back of my head I hear an unwholesome crunching sound. I told the nurse practitioner about this who's response is "Yeah, we've heard that before but don't know what to tell you". My bottom most staple is all wiggly like a loose tooth and due to my OCD I feel compelled to pull it out but won't because it would probably hurt like hell. And when I'm up walking or sitting in the car I get to wear a lovely neck brace that though stabilizes my head, also sort of chokes me.
Photo Update:
Aside from that, the right hand muscles in my neck keep spasming. I have no appetite, probably from the enormous amount of narcotics I'm taking scheduled. Chewing hurts. Laying down hurts. When I lay on the back of my head I hear an unwholesome crunching sound. I told the nurse practitioner about this who's response is "Yeah, we've heard that before but don't know what to tell you". My bottom most staple is all wiggly like a loose tooth and due to my OCD I feel compelled to pull it out but won't because it would probably hurt like hell. And when I'm up walking or sitting in the car I get to wear a lovely neck brace that though stabilizes my head, also sort of chokes me.
Photo Update:
Tuesday, August 9, 2011
Surgery and Hospital Stay
On August 4th at 1:30pm, I had surgery. I arrived at the hospital early to receive fluids early because I was very ill from dehydration. I changed into a gown, got an IV started, and watched TV for 3.5 hours till my time came. I met with the anesthesiologist, several nurses, someone who was monitoring my nervous system, my surgeon, and his nurse practitioner. I remember being wheeled into the O.R., being given something, and the anesthesiologist telling me I was about to get really tired. Next thing I knew I'm waking up in the ICU with a nurse asking me to rate my pain on a scale of 1-10. It took me several moments to even process the question. I didn't feel pain at all actually.
The surgeon came in and said everything went well. My right lobe was a lot bigger than the left apparently, and he did succeed on putting the titanium plate in. There was a risk I wouldn't get the plate if my skull was thinner than 5mm or else the screws would penetrate through the bone and touch my brain. Now if I do something stupid I can write it off as literally having a screw loose.
The first night in the ICU was the best and the worst. The best in that there were nurses doting on my every need keeping me super fucked up on dilaudid, valium, and toradol. It was also the worst in the sense of the catheter that had been placed during surgery. I'd never had one before and didn't even know I had it till I tried to scoot into an upright position and felt like my bladder was being ripped out. From that point on I was begging the nurse to take it out, promising that I felt well enough to get up to pee. She said no. It was torture. Eventually from all my complaining I made her break at 4:00am and she conceded. After that I slept well till about 7am when the surgeons nurse came in to check on me. There's something almost violating about sleeping soundly to be awoken by someone you hardly know in some strange place and feeling all disoriented and confused. I had to stop and think "Where am I??? What day is it??? Who are you??? Why does my head hurt???"
Back to sleep - then an hour later Peter arrived to check on me.
Back to sleep - then I'm awoken by someone bringing me breakfast. Soggy french toast with syrup in a plastic tube, apple juice, black coffee, and a piece of turkey bacon that though I didn't eat, I hear tasted like play-doh and salt. I was hooked up to a device that gave me dilaudid whenever I pushed a button (as long as it was at least 8 minutes apart), and survived the oncoming pain by that.
That day and next night are a complete haze. My only vivid memories pertain to going for a couple walks with the physical therapists, and getting up to pee using the shared bathroom with the patient next door with the doors that don't lock. Didn't so much care for that.
The next afternoon I was transferred out of the ICU and into the regular hospital. This time I had my own bathroom and a larger TV. I was given a menu to order food from, but by this point I was too nauseated that two bites of food and I was done. The dilaudid was no longer self administered, and given in greater amounts less frequently. It made my whole body itch so I had to be given benadryl IV as well. All these medicines pumping in through my left hand for three days left my vein feeling like it was going to explode. It burned, ached, and stung even with just saline. Luckily I had a great nurse after this point who changed out the IV and would pull up a chair and give me the injections slowly over the course of 5 minutes instead of pushing it through in 30 seconds. We talked about medicine and animals. He has horses, and a dog with a leg brace. I intend on writing a letter to the hospital about how gentle, friendly, and compassionate he was.
That night I slept well until 7am when I was awoken by the surgeons nurse again. She cut right to the chase and asked if I'd had a bowel movement yet. I said no, and tried to reason with her that since I had gone the morning before surgery, and had hardly eaten while I was there, that I didn't have to go, but she was adamant about it and ordered me a suppository and a bottle of magnesium citrate. She was not my favorite person after that. The suppository - though it worked somewhat - was really uncomfortable and painful, and for some reason I wasn't allowed to just try one or the other, I had to have both, so where the suppository worked in about 30 minutes, the citrate took a lot longer and made me just puke my guts up all afternoon. I don't know who invented that crap, but carbonated lemon juice that results in diarrhea and projectile vomiting? Really? That person should burn in hell.
P.S. - I did have to disgustingly preserve my feces as evidence that I didn't have an obstruction.
That night I felt much better, and around 9pm I was discharged. I'm glad too because the night nurse had just come on and I had a feeling she didn't know what the hell she was doing. She pulled the IV out in the most painful way possible, and didn't know which papers were mine and which were the hospitals. I got home and went straight to bed, and slept somewhat peacefully. I missed the feeling of the dog thrashing about in her sleep while laying on top of my legs.
Today has been up and down. I'm trying to keep active like the doctor said by doing some aisles at Target and going for walks with Peter and Zia. I can't walk Zia just in case she pulls and I strain myself. Nor can I open the heavy doors of the building. Or bend over to pick things up without getting dizzy, but I shall recover.
Something I didn't anticipate was how much my scalp hurts. Combing (or even touching) my hair hurts, and turning my head the the right feels like someones yanking on the top left portion of my scalp. I'm paranoid about accidentally pulling out one of my 24 staples if it gets caught on my pillow or something, and I still have no appetite. When I go out children look on in horror, as do some adults, and I so badly want someone to ask me what happened so I can say something like how I used to telekineticly set people on fire by accident and had it corrected.
Now for some fun pictures:
The surgeon came in and said everything went well. My right lobe was a lot bigger than the left apparently, and he did succeed on putting the titanium plate in. There was a risk I wouldn't get the plate if my skull was thinner than 5mm or else the screws would penetrate through the bone and touch my brain. Now if I do something stupid I can write it off as literally having a screw loose.
The first night in the ICU was the best and the worst. The best in that there were nurses doting on my every need keeping me super fucked up on dilaudid, valium, and toradol. It was also the worst in the sense of the catheter that had been placed during surgery. I'd never had one before and didn't even know I had it till I tried to scoot into an upright position and felt like my bladder was being ripped out. From that point on I was begging the nurse to take it out, promising that I felt well enough to get up to pee. She said no. It was torture. Eventually from all my complaining I made her break at 4:00am and she conceded. After that I slept well till about 7am when the surgeons nurse came in to check on me. There's something almost violating about sleeping soundly to be awoken by someone you hardly know in some strange place and feeling all disoriented and confused. I had to stop and think "Where am I??? What day is it??? Who are you??? Why does my head hurt???"
Back to sleep - then an hour later Peter arrived to check on me.
Back to sleep - then I'm awoken by someone bringing me breakfast. Soggy french toast with syrup in a plastic tube, apple juice, black coffee, and a piece of turkey bacon that though I didn't eat, I hear tasted like play-doh and salt. I was hooked up to a device that gave me dilaudid whenever I pushed a button (as long as it was at least 8 minutes apart), and survived the oncoming pain by that.
That day and next night are a complete haze. My only vivid memories pertain to going for a couple walks with the physical therapists, and getting up to pee using the shared bathroom with the patient next door with the doors that don't lock. Didn't so much care for that.
The next afternoon I was transferred out of the ICU and into the regular hospital. This time I had my own bathroom and a larger TV. I was given a menu to order food from, but by this point I was too nauseated that two bites of food and I was done. The dilaudid was no longer self administered, and given in greater amounts less frequently. It made my whole body itch so I had to be given benadryl IV as well. All these medicines pumping in through my left hand for three days left my vein feeling like it was going to explode. It burned, ached, and stung even with just saline. Luckily I had a great nurse after this point who changed out the IV and would pull up a chair and give me the injections slowly over the course of 5 minutes instead of pushing it through in 30 seconds. We talked about medicine and animals. He has horses, and a dog with a leg brace. I intend on writing a letter to the hospital about how gentle, friendly, and compassionate he was.
That night I slept well until 7am when I was awoken by the surgeons nurse again. She cut right to the chase and asked if I'd had a bowel movement yet. I said no, and tried to reason with her that since I had gone the morning before surgery, and had hardly eaten while I was there, that I didn't have to go, but she was adamant about it and ordered me a suppository and a bottle of magnesium citrate. She was not my favorite person after that. The suppository - though it worked somewhat - was really uncomfortable and painful, and for some reason I wasn't allowed to just try one or the other, I had to have both, so where the suppository worked in about 30 minutes, the citrate took a lot longer and made me just puke my guts up all afternoon. I don't know who invented that crap, but carbonated lemon juice that results in diarrhea and projectile vomiting? Really? That person should burn in hell.
P.S. - I did have to disgustingly preserve my feces as evidence that I didn't have an obstruction.
That night I felt much better, and around 9pm I was discharged. I'm glad too because the night nurse had just come on and I had a feeling she didn't know what the hell she was doing. She pulled the IV out in the most painful way possible, and didn't know which papers were mine and which were the hospitals. I got home and went straight to bed, and slept somewhat peacefully. I missed the feeling of the dog thrashing about in her sleep while laying on top of my legs.
Today has been up and down. I'm trying to keep active like the doctor said by doing some aisles at Target and going for walks with Peter and Zia. I can't walk Zia just in case she pulls and I strain myself. Nor can I open the heavy doors of the building. Or bend over to pick things up without getting dizzy, but I shall recover.
Something I didn't anticipate was how much my scalp hurts. Combing (or even touching) my hair hurts, and turning my head the the right feels like someones yanking on the top left portion of my scalp. I'm paranoid about accidentally pulling out one of my 24 staples if it gets caught on my pillow or something, and I still have no appetite. When I go out children look on in horror, as do some adults, and I so badly want someone to ask me what happened so I can say something like how I used to telekineticly set people on fire by accident and had it corrected.
Now for some fun pictures:
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| The back of my head! |
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| Close up of incisions and staples |
Thursday, August 4, 2011
The Morning Of Surgery
I'm having surgery in 5 hours. I've been up for the past 2 hours, sleeping a total of about 3 hours last night. I felt prepared. I had come to terms with the possibility of being the one in five that doesn't get relief, I had come to terms with the horrible pain I will feel when I wake up. I had thought about the possibility of something going wrong, and about something going horribly wrong. Overall, I had felt positive and confident about whatever may come my way.
Last night, that all went away.
I've been so nervous about so many things that I couldn't sleep much. Feeling worried about the moment I wake up - what if I'm alone and in horrible pain and can't call someone. What if something goes wrong. What if I woke up during surgery. That's a big one that kept me up. The thought of something going wrong with the anesthesia and waking up while they're drilling into my skull but being too incapacitated to get any ones attention. I know these are all very unlikely, but I've had unlikeliness happen to me before.
I have not been allowed to eat or drink after midnight and do not think I've ever felt this sick and dehydrated. I'm sure it's partially nerves but nerves or not, I've been dry-heaving, wishing desperately to vomit, for the past hour. My head is hurting but I'm trying to not take pain meds because I just know they'll make my stomach feel worse. I called my surgeons office during the on-call hours this morning to see if I could even have some ice chips. I'm holding the phone in my hand waiting for it to ring me back but it doesn't. I count the minutes that go by. 5. 10. 15. 20. At 24 minutes I call back. Maybe the answering service took my phone number down wrong. Nope. But she'll re-try the page. Who's on call by the way who's not calling me back? Oh, it's my doctor. The guy who will be drilling into my skull later. An astounding vote of confidence goes out to him. It's now been 31 minutes in total and no call back. "Maybe he's already in surgery for the day" I try to assure myself. But then, isn't it a slightly retarded idea to have him be the one on call?
So I wait. Typing here trying to vent my frustrations with a bucket on my lap just in case one of these dry heaves manages to produce something. I doubt it though. I feel like my insides are made of sand. I've gone much longer than this without drinking something, but knowing that I CAN'T drink anything until I wake up from surgery in probably 9 hours makes it unbearable.
My cat jumps on my desk and tries climbing into my puke-bucket being all cute. I notice he has water droplets on his whiskers and feel envious of him. I'm jealous of a cat right now. Fail.
41 minutes and no call back. In 19 minutes the office will be open and I can talk to the receptionist and then hopefully one of the nurses. I'm trying to plan out my morning, allotting as much time as possible to things like showering and walking the dog to make the time go faster. My head is hurting and I feel dreadful.
Call already!
Last night, that all went away.
I've been so nervous about so many things that I couldn't sleep much. Feeling worried about the moment I wake up - what if I'm alone and in horrible pain and can't call someone. What if something goes wrong. What if I woke up during surgery. That's a big one that kept me up. The thought of something going wrong with the anesthesia and waking up while they're drilling into my skull but being too incapacitated to get any ones attention. I know these are all very unlikely, but I've had unlikeliness happen to me before.
I have not been allowed to eat or drink after midnight and do not think I've ever felt this sick and dehydrated. I'm sure it's partially nerves but nerves or not, I've been dry-heaving, wishing desperately to vomit, for the past hour. My head is hurting but I'm trying to not take pain meds because I just know they'll make my stomach feel worse. I called my surgeons office during the on-call hours this morning to see if I could even have some ice chips. I'm holding the phone in my hand waiting for it to ring me back but it doesn't. I count the minutes that go by. 5. 10. 15. 20. At 24 minutes I call back. Maybe the answering service took my phone number down wrong. Nope. But she'll re-try the page. Who's on call by the way who's not calling me back? Oh, it's my doctor. The guy who will be drilling into my skull later. An astounding vote of confidence goes out to him. It's now been 31 minutes in total and no call back. "Maybe he's already in surgery for the day" I try to assure myself. But then, isn't it a slightly retarded idea to have him be the one on call?
So I wait. Typing here trying to vent my frustrations with a bucket on my lap just in case one of these dry heaves manages to produce something. I doubt it though. I feel like my insides are made of sand. I've gone much longer than this without drinking something, but knowing that I CAN'T drink anything until I wake up from surgery in probably 9 hours makes it unbearable.
My cat jumps on my desk and tries climbing into my puke-bucket being all cute. I notice he has water droplets on his whiskers and feel envious of him. I'm jealous of a cat right now. Fail.
41 minutes and no call back. In 19 minutes the office will be open and I can talk to the receptionist and then hopefully one of the nurses. I'm trying to plan out my morning, allotting as much time as possible to things like showering and walking the dog to make the time go faster. My head is hurting and I feel dreadful.
Call already!
Tuesday, July 12, 2011
Good Days and Bad Days
A Good Day. A good day is a day where I can manage my pain by taking my 'weak' narcotic and muscle relaxers, Fioricet and Flexeril. It's a day when I can go about most things as usual only gripping my skull in incapacitating pain a couple of times. A good day is when I can get relief from an ice pack on my head.
A Bad Day. A bad day is a day like today, where I'm taking 4mg of Dilaudid every 6 hours just to survive. It's a day when my pain is so intolerable that it makes me vomit, even when I've just vomited so much that my throat is raw and bleeding, my body still convulses and acts as though I could possibly heave up another chunk. When my skull feels like it's being squeezed in multiple ways like I've got my head in a trash compactor. Where the mere act of standing up can make the pain 100 times worse.
The last time I had a day this bad was a little over 4 months ago. I was in this same apartment in Boston getting ready to fly home within 48 hours, just like I'm planning to do now. I've discussed with my doctors the possibility of altitude playing a roll in my headaches, but there's so many factors to take into consideration I can't pinpoint anything. I want to go home so badly. This vacation to see some family has turned grim and stressful, and I so don't want to make it worse by having this turn into an ER-visit-on-the-wrong-side-of-the-country-so-I-can't-get-home-and-see-my-own-doctors-and-recuperate-in-my-own-bed thing. Timing seems to always make things complicated, and honestly I'd rather have to have this pain twice as long but do it in my own confident hospital and be able to sleep in my own dirty bed with my stinky dog than have it all happen here again.
On that note - time to go throw up again...
It feels like I can hear and feel my pulse in my own head. Like the whole thing's pumping and ready to explode. I can't even take more medicine because at this point I'll just puke it up. Sitting, standing, laying down, hunching over a toilet, I can't get comfortable.
I call up my neurosurgeons office and ask to speak to one of the nurses. The receptionist says "Is this Julie?" She can't see my number so she must be recognizing me by voice. How sad is that.
I've been so miserable so much for so long that I can't wait to have this surgery. Even if it helps a little so I have more 'Good Days' than bad ones, that's something.
A Bad Day. A bad day is a day like today, where I'm taking 4mg of Dilaudid every 6 hours just to survive. It's a day when my pain is so intolerable that it makes me vomit, even when I've just vomited so much that my throat is raw and bleeding, my body still convulses and acts as though I could possibly heave up another chunk. When my skull feels like it's being squeezed in multiple ways like I've got my head in a trash compactor. Where the mere act of standing up can make the pain 100 times worse.
The last time I had a day this bad was a little over 4 months ago. I was in this same apartment in Boston getting ready to fly home within 48 hours, just like I'm planning to do now. I've discussed with my doctors the possibility of altitude playing a roll in my headaches, but there's so many factors to take into consideration I can't pinpoint anything. I want to go home so badly. This vacation to see some family has turned grim and stressful, and I so don't want to make it worse by having this turn into an ER-visit-on-the-wrong-side-of-the-country-so-I-can't-get-home-and-see-my-own-doctors-and-recuperate-in-my-own-bed thing. Timing seems to always make things complicated, and honestly I'd rather have to have this pain twice as long but do it in my own confident hospital and be able to sleep in my own dirty bed with my stinky dog than have it all happen here again.
On that note - time to go throw up again...
It feels like I can hear and feel my pulse in my own head. Like the whole thing's pumping and ready to explode. I can't even take more medicine because at this point I'll just puke it up. Sitting, standing, laying down, hunching over a toilet, I can't get comfortable.
I call up my neurosurgeons office and ask to speak to one of the nurses. The receptionist says "Is this Julie?" She can't see my number so she must be recognizing me by voice. How sad is that.
I've been so miserable so much for so long that I can't wait to have this surgery. Even if it helps a little so I have more 'Good Days' than bad ones, that's something.
Thursday, June 30, 2011
Neuro-health Lifestyle Changes
So over the years a lot of doctors have given me a lot of suggestions for 'lifestyle changes' that would help my headaches, and give me more energy. Such suggestions have included:
Put on weight
Lose weight
Eat more veggies
Take vitamin D
Don't drink caffeine after noon
Don't drink caffeine at all
Get more sleep
No artificial sweeteners
Exercise more
Get massages
Take vitamins
Don't take vitamins
Drink caffeine
The list goes on... I've tried all these things, and nothing seems to ever help. This has left me very cynical about so called 'lifestyle changes'. But in a final shot while approaching surgery I'm trying one last bout of changes that my neurosurgeon recommends. I'm taking vitamins, sleeping as well as I can, dropping weight, trying to exercise through by debilitating fatigue, and worst of all - dieting.
This particular diet is unlike anything I've ever tried before in that it's ridiculously extreme and restrictive. It's called the paleolithic (meaning pre-agricultural), or 'caveman' diet. It's designed so that I can only eat foods my ancestors would have eaten. Things the human body is meant to eat. This means no dairy. No grains. No refined sugars. No artificial sweeteners. So what does that leave? Meat, eggs, nuts, fruit, and veggies. Oh but guess what? I don't eat meat, so just eggs, nuts, fruit, and veggies.
I've been doing it about a month now and have not seen any results, but keep being told "it takes time, it won't help over night". Let me tell you this though - my gastric tract HATES me. There's been days where I eat nothing but watermelon and peanuts. You can imagine the rest. I never realized how important grains were to me before doing this. I think 80% of my diet used to be grain-based, but since grains need to be sewn and aren't pre-agricultural. That's a no-no.
Doing some research I've found that people do this more strictly and trace it back to their actual ancestral roots to eat only natural foods of that region. Being of Scottish decent, if you exclude meat, what does this mean? Potatoes and turnips? Even worse, some people go so far as to not cook their food. So....raw potatoes and turnips. Yum.
I keep wondering after surgery if the doctor will request the hospital feed me paleolithic meals. That's going to be a lot of fruit salad. But hey - no need to worry about that pre-discharge B.M. they're requesting of me.
Wednesday, June 29, 2011
Diagnostic Images
Below are some of my own MRI's and Radiographs that I've edited slightly to distinguish what's what and illustrate my neurological afflictions:
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| This image shows my syringomyelia. The yellow is the spinal cord, the blue is the cerebro-spinal-fluid, and the pink is the syrinx (same stuff as the blue, but misplaced inside the cord). |
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| The yellow is my spinal cord, the blue is cerebro-spinal-fluid, the pink is my brain, and the darker pink below the line I drew in is the Chiari malformation. No brain tissue should be below the line. |
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| This radiograph simply shows my scoliosis. It was taken while I stood perfectly straight so this is how my spine is naturally curved. It's not usually noticeable except if I suck in my gut lowest right rib is significantly lower. |
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| Just another scoliosis radiograph but higher up in the thoracic region showing that my spine is wacky all the way from top to bottom. |
Tuesday, June 28, 2011
Random Worries
With a major surgery such as this I suspect it's normal to be worried about certain things. What are the risks, how long is the recovery, how will it affect my life.... But the thing is, I've known the answers to these sort of questions for a long time, so my mind's going a step further and racing and obsessing over the random stuff.
When can I dye my hair after surgery?
Will having a titanium plate in my head make me look suspect at airport body scanners?
How bored will I be in the hospital while I recover?
Will I set off metal detectors?
Do I have to avoid certain shampoos and crap?
Will I be able to stick a magnet to my head?
How bad will the scar be?
How do I feel about being called by the club-like-name 'zipperhead'?
The doctors medical assistant made a point of telling me that post-op before I'm allowed to leave the hospital I'll have had to make a bowel movement to make sure the drugs haven't caused constipation to the point of obstruction. This opens up even more questions.
What if I can't? And even more curiously...
How will they know? Will I have to crap in a bio hazard bucket and show them or will they take my word for it?
Even though it's over a month till surgery, I'm prepping already by bothering people on forums with my retarded questions. As I type I'm downloading Bret Easton Ellis's 'Glamorama' from Audible.com (FYI - If you sign up you get any free audiobook and then can cancel and not be charged). I'd been told by someone that their ipod was a savior since reading was painful and difficult. I'm still going to go in with my netbook, some discover magazines, and some nat. geo's, but just in case I have the audio-book option.
We've also already got a trip all planned out to see some of Peter's family out east before this all happens because I probably won't be flying any time soon afterwards. I've got my calendar marked a week before surgery to re-dye my hair and prepare for some grey to start showing. There's another random worry - grey hair. People say the area that's been shaved often grows back grey, and at 23 I already have too much of that.
I'm actually worrying a lot about my hair as stupid and girly as that is. I've been growing it out on purpose and now to know I'll have a patch of it shaved off sucks. It should be done in such a way that I can hide it and the incision under the rest of my hair, but I just hope the Doctor has 'decent stylist' on his credentials also.
When can I dye my hair after surgery?
Will having a titanium plate in my head make me look suspect at airport body scanners?
How bored will I be in the hospital while I recover?
Will I set off metal detectors?
Do I have to avoid certain shampoos and crap?
Will I be able to stick a magnet to my head?
How bad will the scar be?
How do I feel about being called by the club-like-name 'zipperhead'?
The doctors medical assistant made a point of telling me that post-op before I'm allowed to leave the hospital I'll have had to make a bowel movement to make sure the drugs haven't caused constipation to the point of obstruction. This opens up even more questions.
What if I can't? And even more curiously...
How will they know? Will I have to crap in a bio hazard bucket and show them or will they take my word for it?
Even though it's over a month till surgery, I'm prepping already by bothering people on forums with my retarded questions. As I type I'm downloading Bret Easton Ellis's 'Glamorama' from Audible.com (FYI - If you sign up you get any free audiobook and then can cancel and not be charged). I'd been told by someone that their ipod was a savior since reading was painful and difficult. I'm still going to go in with my netbook, some discover magazines, and some nat. geo's, but just in case I have the audio-book option.
We've also already got a trip all planned out to see some of Peter's family out east before this all happens because I probably won't be flying any time soon afterwards. I've got my calendar marked a week before surgery to re-dye my hair and prepare for some grey to start showing. There's another random worry - grey hair. People say the area that's been shaved often grows back grey, and at 23 I already have too much of that.
I'm actually worrying a lot about my hair as stupid and girly as that is. I've been growing it out on purpose and now to know I'll have a patch of it shaved off sucks. It should be done in such a way that I can hide it and the incision under the rest of my hair, but I just hope the Doctor has 'decent stylist' on his credentials also.
Meeting Dr. Oro
My first impression of Dr. Oro was a man who talks too much and sees patients as numbers to add to his surgery tally, but as appointments went on, I found him to be a kind man who does in fact see patients as people, and will answer any and all questions if you can slip them in between his exuberant breaths of speech. I was at first convinced he would want to do surgery right away and have that be that, but both to my delight in feeling confident in him and in my frustration at the process being slowed, he ran about a million tests to rule out other possible factors.
Okay, so a million is exaggerating. He did an MRI of my head, a MRI of my cervical spine, a cine-flow (seeing how the fluid moves through my spine/head), and an x-ray to see the extent of my scoliosis. Oh yeah, I also have scoliosis, or in layman's terms, a very crooked spine. When these came back with my 'insignificant' Chiari malformation, and no evidence of this syringomyelia I told him I had, he ran more tests. An MRI of the rest of my spine (revealing my uncommon thoracic syrinx), to make sure I didn't have 'tethered cord'. This would have been if the bottom of my spinal cord had fused to my spine and instead of having a true Chiari malformation, my brain was simply getting tugged down into my spinal canal over time by the brain stem. Luckily, I don't have this.
The last thing he wanted was a repeat spinal tap. If my CSF pressure was still 30+, the surgery options would be different. Luckily my opening pressure was only 16 (only slightly above normal), and they drained a bit so it's down to 11 as of most recently (normal). This spinal tap kind of sucked because I had to lay flat on my stomach while the technician attempted twice before being successful on the third time, to get the needle through my vertebrae. I had been prescribed Valium to take before the procedure this time, but unfortunately I didn't feel the effects till about 4 hours later when I was home.
So since my spinal cord's not tethered, I don't have excessive fluid pressure in my head, and nothing else seems terribly out of the ordinary, I'm officially a candidate for 'Posterior Fossa Decompression' surgery. This is where the doctor is going to shave a strip of my hair on the back of my head, cut, take out a small piece of my skull, open the sac that my brain is in, pull down some tissue from higher up that lines my skull, stitch that over the brain, and then (hopefully assuming my skull is thick enough, screw a titanium plate over the missing skull), staple me up, and voila, done. The surgery takes about 3.5 hours, requires 1 day in the ICU, and a 2-4 day hospital stay. If you youtube it, you can find all sorts of gory videos.
As terrifying as it is, the risks are really minimal and the same as with any surgery, and I'm also somewhat excited at the prospect of not having headaches and not living off narcotics anymore. It only works for 80% of people, but for the agony that I'm in on a daily basis, 80% is a damn good odd. I worked towards getting it scheduled the same day as I last saw the doctor, and will anxiously be thinking about nothing but this for the next month while I await my hopeful salvation.
Okay, so a million is exaggerating. He did an MRI of my head, a MRI of my cervical spine, a cine-flow (seeing how the fluid moves through my spine/head), and an x-ray to see the extent of my scoliosis. Oh yeah, I also have scoliosis, or in layman's terms, a very crooked spine. When these came back with my 'insignificant' Chiari malformation, and no evidence of this syringomyelia I told him I had, he ran more tests. An MRI of the rest of my spine (revealing my uncommon thoracic syrinx), to make sure I didn't have 'tethered cord'. This would have been if the bottom of my spinal cord had fused to my spine and instead of having a true Chiari malformation, my brain was simply getting tugged down into my spinal canal over time by the brain stem. Luckily, I don't have this.
The last thing he wanted was a repeat spinal tap. If my CSF pressure was still 30+, the surgery options would be different. Luckily my opening pressure was only 16 (only slightly above normal), and they drained a bit so it's down to 11 as of most recently (normal). This spinal tap kind of sucked because I had to lay flat on my stomach while the technician attempted twice before being successful on the third time, to get the needle through my vertebrae. I had been prescribed Valium to take before the procedure this time, but unfortunately I didn't feel the effects till about 4 hours later when I was home.
So since my spinal cord's not tethered, I don't have excessive fluid pressure in my head, and nothing else seems terribly out of the ordinary, I'm officially a candidate for 'Posterior Fossa Decompression' surgery. This is where the doctor is going to shave a strip of my hair on the back of my head, cut, take out a small piece of my skull, open the sac that my brain is in, pull down some tissue from higher up that lines my skull, stitch that over the brain, and then (hopefully assuming my skull is thick enough, screw a titanium plate over the missing skull), staple me up, and voila, done. The surgery takes about 3.5 hours, requires 1 day in the ICU, and a 2-4 day hospital stay. If you youtube it, you can find all sorts of gory videos.
As terrifying as it is, the risks are really minimal and the same as with any surgery, and I'm also somewhat excited at the prospect of not having headaches and not living off narcotics anymore. It only works for 80% of people, but for the agony that I'm in on a daily basis, 80% is a damn good odd. I worked towards getting it scheduled the same day as I last saw the doctor, and will anxiously be thinking about nothing but this for the next month while I await my hopeful salvation.
Monday, June 27, 2011
The Road To Here...
Brain Surgery! Wow. Even saying the words take my breath away a little. Before we get to that, allow me to back up a little...
Since the age of 15 I've found myself suffering from terrible incapacitating headaches. Luckily enough by age 16 they'd found the answer(s) to why:
The first being a 'Chiari malformation' [key-R-E]. This is basically where part of the cerebellum (the lower back part of your brain that mostly controls balance and motor skills), doesn't have enough room and is squashed downward into the spinal canal (where your brain stem and spinal cord meet). It's also sometimes referred to as 'cerebral herniation' (like a tummy hernia...but with the brain). My cerebral herniation measures 8mm. This sounds insignificant, especially to anyone who uses the imperial system and can't mentally gauge a millimeter, but it's enough that I've spent a good portion of my life heavily medicated from headaches.
The second puzzle piece is 'Syringomyelia' [psy-ringo-my-L-ia]. This is where cerebro-spinal fluid (of CSF) that surrounds and cushions your spinal cord from your vertebrae is actually forced inside the spinal cord causing a cyst-like little worm of fluid (or syrinx). Syringomyelia often accompanies Chiari malformations and is located in the cervical portion of the spine (the uppermost section), but in my case my syrinx is in my thoracic region (the next section down from cervical and above lumbar (lower back) ). Now - I don't know the significance of that exactly, just that it's uncommon. What does syringomyelia do? I'm not really sure. All I know is it eats away at nerves - particularly in peoples hands, feet, and face - and now I can stab myself in the hand and not feel it. *Funny side story - May 2010 I was attacked by a dog with about a zillion puncture wounds in my hands, flesh literally hanging off, and didn't feel them at all. Two inches up my arm where she bit and broke my radius...that I felt all too well*
From this point on I'm miserable all the time. Never a moment of relief. I'm taking diladid orally every day just to survive the pain. I go to my neurologist who puts me on medicine to stop CSF production but that's all he can do aside from prescribe more dilaudid. Desperate I stumble upon ASAP.org, an association for people just like me! All this time I thought I was so uncommon and rare, but actually, tons of people suffer from this kind of crap. I hear the name Dr. John Oro and to my surprise he practices right in my own city! A world-renown Chiari malformation neurosurgeon specialist is 30 minutes from me. I make an appointment right away.
Stay tuned to find out what happens next.
Since the age of 15 I've found myself suffering from terrible incapacitating headaches. Luckily enough by age 16 they'd found the answer(s) to why:
The first being a 'Chiari malformation' [key-R-E]. This is basically where part of the cerebellum (the lower back part of your brain that mostly controls balance and motor skills), doesn't have enough room and is squashed downward into the spinal canal (where your brain stem and spinal cord meet). It's also sometimes referred to as 'cerebral herniation' (like a tummy hernia...but with the brain). My cerebral herniation measures 8mm. This sounds insignificant, especially to anyone who uses the imperial system and can't mentally gauge a millimeter, but it's enough that I've spent a good portion of my life heavily medicated from headaches.
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| from conquerchiari.org |
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| from websters-online-dictionary.org, edited by me |
When I was 16 a neurosurgeon suggested a surgery that could potentially make me pain-free and happy, but my mom didn't go for it - we won't go into that though. So I had a lumbar puncture to drain some of the excess fluid pressure that was making the syrinx worse. A lumbar puncture is where a doctor numbs your lower back slightly, then jabs a really big needle in between your vertebrae to suck out fluid. I've had a few at this point, and sometimes it doesn't even hurt, but sometimes like drawing blood, they miss and need to re-try and fish around in there. All I know is my age 16 lumbar puncture was one of the most traumatizing medical procedures of my life thus far....and I've had a LOT of medical procedures.
7 years later and I still have these headaches. Cue March 2011. On a trip to visit family in Boston I wake up violently ill with the worst headache I've ever had in my life! I go to an urgent care clinic, who rush me to the ER where I wait for 6 hours before they can get an IV started because I'm so dehydrated from puking up my guts. They get the IV in and then ...oops... our medicine dispensary computer broke and we're too stupid to get you anything manually. 8 hours in the ER and I finally get on dilaudid, a drug 8 times stronger than morphine. It hardly helps but just makes me feel more queasy and restless and uncomfortable. They do a lumbar puncture and find that the pressure in my spinal cavity is 30 (over twice what it should be). They diagnose me with 'pseudotumor cerebri' which as scary as it sounds because of the tumor part, has nothing to do with a tumor and just means excessive fluid around the brain.
From this point on I'm miserable all the time. Never a moment of relief. I'm taking diladid orally every day just to survive the pain. I go to my neurologist who puts me on medicine to stop CSF production but that's all he can do aside from prescribe more dilaudid. Desperate I stumble upon ASAP.org, an association for people just like me! All this time I thought I was so uncommon and rare, but actually, tons of people suffer from this kind of crap. I hear the name Dr. John Oro and to my surprise he practices right in my own city! A world-renown Chiari malformation neurosurgeon specialist is 30 minutes from me. I make an appointment right away.
Stay tuned to find out what happens next.
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