So, 7th grade is hard, and exhausting!! After two weeks of 7th grade for Bouga and an hour and a half of it for me last Thursday, that is our description!! Homework is important, HOME being the key part of that label, and Bouga is not quite getting that concept. He likes the line "I can finish it in the morning before class starts." which I am pretty sure equates to "I can finish it in some other class before I have that class which means I won't pay attention to the class I am sitting in." No Bueno! Especially when the teacher that appears to be the sweetest and most easy going of his bunch said the easiest way to make nice Mrs. Moore turn into mean Mrs. Moore is to do math homework in Written Communications class. Of course, math is the subject he most often wants out of. After a couple years of fighting with Will when we work on math, multiplication specifically, and a discussion with Spencer, we almost think Will missed the multiplication tables in the 4th grade debacle that destroyed his life for an entire school year. Yup, that's right.. my 7th grader has NO clue how to read the multiplication table, let alone have it memorized like we had to do at that age. The poor kid has survived almost 3 years counting out his numbers to figure out his multiplication problems. I had no idea until last week when I tried to show him how to use the table to solve a problem and he freaked out. Not a "I hate this" freak out but an honest to God "I have no idea what you are talking about" meltdown. Holy crap!! Pre-Algebra is hard enough all by itself, but how on Earth do you survive it when you have gone 3 years not knowing something you were supposed to know??? And we wonder how kids make it through school without learning how to read!! This is a kid that has every eye in the school on him in an AMAZING school district and he struggled himself through 3 years without anyone figuring it out. Although that sounds horrific, YAY Will!! I hate math, I was horrible at it, still am, there is no way I could have made it 3 years without one of the biggest structural bases of mathematics being nailed into my head and memorized, but he just made it 3 years with A's in math without knowing the tables, take that Autism!!! So, now we get to learn the tables and hopefully get a new outlook on math!
Now, anyone that knows me knows that I love most anything that has to do with freedom, and speed- horses, race cars, roller coasters, wild animals (minus snakes and spiders which I think should all DIE!!) Although I have never given much thought to being a princess in a Disney movie, I always did like Ariel because she swam free. Well I learned the other night that I can check being a mermaid off my to do list, because if what I experienced the other night was ANYTHING like being a mermaid, I never want to experience it again. I have read about severe drops attacks, talked to new friends who have experienced paralyzing ones for minutes on end, and been told that the ones I experience are on the minor side of things. Because I seem to be digressing so fast with this condition, I guess I knew more severe ones were coming but I had no idea how scary and down right depressing they would be. The other night I was in bed waiting for the elusive sandman to visit, rocking and swimming like I always do when I lay down, and I had this strange thought that I was not able to move my legs. I thought "That's insane, of course you can!!" but when I tried I honestly couldn't. I could move my hips, but it felt like my legs were glued together and made of cement. After several minutes and attempts and a panic of tears, I finally was able to make them move separately, and eventually sit up and move, but they were very weak. I wobbled to the bathroom only because I have door jams and walls to lean into every step of the way, and apparently decided to check the structure of the house along the way because I whomped my head on each corner because the swimming feeling wouldn't go away and I wasn't quite judging my distances right. When I crawled back in bed and let it all sink in I just kept thinking "I don't like being a mermaid, I don't like being a mermaid" and for the first time since I received this horrible news, I let myself break down alone. I have let myself get mad and have an occasional break down since I began this struggle months ago, but always when I am with someone who can talk some sense into me and be a logical voice when I lose it. I have been very careful NOT to break down alone because I have been afraid if I lost it mentally on my own I wouldn't be able to turn it back off without seriously damaging my mind frame and outlook on all of this, and apparently I was correct- My laid back, I am not going to let this beat me or take my life away attitude took a major hit, although maybe that is exactly what I needed.
Everyone knows that I have not been aggressive with hounding Neurosurgery about the next step or test. I felt there were a few things I needed to get in order before I decided to lay myself up with surgery, and honestly I guess part of me wanted to see if I could just live with it... I am not so sure why I thought that was going to work since I know a syrinx HAS to be operated on, but still, it sounded good in my head at the time. This has not been a popular thought process with my loved ones, their thoughts are that we deal with this surgery and the rest will work itself out. They were seeing what they felt was a steady decline in me, and I was still in fight mode and not willing to acknowledge the slow changes I had been making. . Well, I kept saying I needed 8 weeks to 10 weeks to get things in order to where I felt comfortable and it is almost 8 weeks since my diagnosis and almost everything is in order that I needed to be in order. So basically now there is no excuse to not hound neurosurgery. Instead, there is a sense of urgency to get things moving. There HAS been a steady decline in the quality of life I have led over the last 6 months, but most noticeably in the last 8 weeks. I have slowly gone from the one who had something to do every waking moment of every day to not being capable of doing anything most days. I have been dismissing the giving up going dancing because I just didn't feel like it, the sleeping more and more, the added minutes to getting up out of bed and letting the world finish swirling before I could safely walk, the increasing number of days that I would spend vomiting anything I attempted to eat because the migraines were taking their toll. Day to day and week to week there is no drastic change, but month to month there is no more denying that Chiari has stolen my life. The only thing I am managing to do on a regular basis successfully is work, and I am scared that it is only a matter of time before that will fall victim to this if I don't get zipped sooner than later. I can't go a day without a headache, most of the time a full blown migraine type headache, and the pins and needles are always there now, and always painful. It's draining to function through them, let alone annoying as all get out that they are there in the first place!! One shift puts me in bed for 18 to 20 hours after I get off, two shifts in a row can wipe out 2 or 3 days. This time of year we are always on the go between fairs and festivals and sports, riding our horses almost daily, and camping almost every weekend. I am always that fun mom that is taking my son to amusement parks and lazer tag and just loving and living life. This year, I am trapped in my bed, unable to move well enough, unable to function to be out living our crazy fun life, unable to even fake it, which it seems I have been doing for the last year or so. A month ago I could tell you all about Chiari, and it was consuming my every thought because of the new diagnosis, but it was not consuming my every move. 7 weeks ago it was still a crazy medical term that included all of these odd happenings and symptoms in my life but I couldn't tell you that it had taken over my life. I didn't want to admit that it had. I wanted to be that one person that persevered through it without it being apparent that I was fighting this battle, I wanted to be the strong person you guys have always said "I don't know how you do it!" to, but this time, I can't. I promise I am not setting a tone for all of my future posts to be doom and gloom, but there is something to admitting we are no longer in control, and admitting it to others just as much as admitting it to ourselves. I am through waiting on neurosurgery to call and tell me when my appointment is and trusting that if this were emergent they would be moving faster. I'm through saying if neurosurgery isn't calling or moving fast than I don't need to. It's time to get help, it's time to feel better, it's time to get the steamroller moving again so I can have my life back, so my loved ones can have me back, and so Chiari can be just a part of a list on a medical chart and not the puppet master of my life!!!
Tuesday, August 30, 2011
Saturday, August 13, 2011
What it feels like...
I promised a description of what life is like with this crazy thing called Chiari for my non-Chiari friends so that you guys can understand a little more about what is going on. Well, words escape me tonight to explain "life", so my symptoms are going to have to be good enough. Funny thing that memory issues and random loss of the ability to connect words is one of the symptoms!! So, here goes..
Constant headache at the back of my neck and base of my head, not an "I had a bad day headache" but more like intense pressure and tension ache, that on most days turns into a complete migraine halfway through the day or can be turned into a migraine if I strain, tilt my head up for long periods of time looking at a monitor at work, looking up in the sky at fireworks, etc. These can put me in bed for days and make it feel like my brain is trying to push my eyes out of my head, which I guess literally it is at some level. Exhaustion with chronic joint pain/stiffness, although with my life I am not sure anyone would limit that to being a direct result of Chiari! Random dizzy moments where the world just goes "Weeeeee" and shifts about halfway around the room and then stops, along with dizzy, the floor is moving feelings every time I change position from sitting to standing, laying down to sitting, sitting to laying down, that one is fun, feels like the old game where we used to make each other "fall through the floor". Very odd changes in blood pressure when my head is turned in certain directions also can be very "fun.". Visual disturbances, floaters and halos randomly, that sometimes make it hard to read print or clocks. Sensation issues- these used to come as the feeling of ants crawling on me in my arms, hands, legs, and feet, but now they are widespread and often more like pins and needles like when your leg falls asleep type of pins and needles, rather annoying and very painful. Insomnia, although who doesn't fight with that anymore?? Balance issues and depth perception issues, which are a bit hard to accept coming from a former gymnast and cheerleader!! I am constantly running into things, falling over things that aren't there, and misjudging depths when I walk, steps are my worst enemy! Drops attacks... hard to explain but the best way I know how to is that the floor falls out from under me just for a second and my muscles seem to fail, like I lose all sense of direction and position, and then I am fine the next second. Sinus issues and difficulty swallowing due to the crowding of everything in my head and neck, I have become a master at taking small bites and taking crushed pills. Rocking when I lay down, not I am crazy sitting in a corner rocking, but the feeling of being rocked, EVERY TIME I LAY DOWN. Hearing my heartbeat in my ears almost all the time, not just when I run or when I smash my ear funny laying on it. "Brain freeze headaches" every time I yell or laugh. Boarder line nausea most of the time, again, ANNOYING! Poor blood circulation... I have no idea how this is caused by the Chiari, but my hands and feet are almost always either white or purple! Memory issues and cognitive deficits due to decreased cerebral spinal fluid flow to certain parts of the brain and abnormal shaping and pressure on certain parts of the brain... and here I just thought I was a scatterbrain. Cold sensation through to the back of my neck and base of head and in my sinuses when I drink anything colder than regular fridge temperature. Pressure and tightness in chest, especially when exerting energy...I can't even WALK a flight of stairs right now without being short of breath, and here I thought I was just out of shape. Rice crispy sound in my neck every time I move it, now that is not only annoying but a little creepy since medically I know what is happening in there to make that noise.
So there ya go, physically, life for me. I am sure I am forgetting something, but I am a sleepy girl! Funny that I never knew that most of this was not normal. I had no idea the brain freeze headaches, the rocking, the heartbeat, the dizziness were problems!! I spoke with Ron with neurosurgery yesterday and he will call me on Monday to give me my appointment information and back to school for Bouga on Tuesday!! Night night our Warrior family and as always thank you for your continued thoughts and prayers!!
Constant headache at the back of my neck and base of my head, not an "I had a bad day headache" but more like intense pressure and tension ache, that on most days turns into a complete migraine halfway through the day or can be turned into a migraine if I strain, tilt my head up for long periods of time looking at a monitor at work, looking up in the sky at fireworks, etc. These can put me in bed for days and make it feel like my brain is trying to push my eyes out of my head, which I guess literally it is at some level. Exhaustion with chronic joint pain/stiffness, although with my life I am not sure anyone would limit that to being a direct result of Chiari! Random dizzy moments where the world just goes "Weeeeee" and shifts about halfway around the room and then stops, along with dizzy, the floor is moving feelings every time I change position from sitting to standing, laying down to sitting, sitting to laying down, that one is fun, feels like the old game where we used to make each other "fall through the floor". Very odd changes in blood pressure when my head is turned in certain directions also can be very "fun.". Visual disturbances, floaters and halos randomly, that sometimes make it hard to read print or clocks. Sensation issues- these used to come as the feeling of ants crawling on me in my arms, hands, legs, and feet, but now they are widespread and often more like pins and needles like when your leg falls asleep type of pins and needles, rather annoying and very painful. Insomnia, although who doesn't fight with that anymore?? Balance issues and depth perception issues, which are a bit hard to accept coming from a former gymnast and cheerleader!! I am constantly running into things, falling over things that aren't there, and misjudging depths when I walk, steps are my worst enemy! Drops attacks... hard to explain but the best way I know how to is that the floor falls out from under me just for a second and my muscles seem to fail, like I lose all sense of direction and position, and then I am fine the next second. Sinus issues and difficulty swallowing due to the crowding of everything in my head and neck, I have become a master at taking small bites and taking crushed pills. Rocking when I lay down, not I am crazy sitting in a corner rocking, but the feeling of being rocked, EVERY TIME I LAY DOWN. Hearing my heartbeat in my ears almost all the time, not just when I run or when I smash my ear funny laying on it. "Brain freeze headaches" every time I yell or laugh. Boarder line nausea most of the time, again, ANNOYING! Poor blood circulation... I have no idea how this is caused by the Chiari, but my hands and feet are almost always either white or purple! Memory issues and cognitive deficits due to decreased cerebral spinal fluid flow to certain parts of the brain and abnormal shaping and pressure on certain parts of the brain... and here I just thought I was a scatterbrain. Cold sensation through to the back of my neck and base of head and in my sinuses when I drink anything colder than regular fridge temperature. Pressure and tightness in chest, especially when exerting energy...I can't even WALK a flight of stairs right now without being short of breath, and here I thought I was just out of shape. Rice crispy sound in my neck every time I move it, now that is not only annoying but a little creepy since medically I know what is happening in there to make that noise.
So there ya go, physically, life for me. I am sure I am forgetting something, but I am a sleepy girl! Funny that I never knew that most of this was not normal. I had no idea the brain freeze headaches, the rocking, the heartbeat, the dizziness were problems!! I spoke with Ron with neurosurgery yesterday and he will call me on Monday to give me my appointment information and back to school for Bouga on Tuesday!! Night night our Warrior family and as always thank you for your continued thoughts and prayers!!
Wednesday, August 10, 2011
7th Grade and The Bright Side of Chiari
So, everyone keeps saying "Wow, and on top of everything with Will..." when they learn my new journey. Let me put that sympathy to bed! Will is doing AMAZING!!!!! He has only had one large seizure in the last year and two smaller one that we are aware of. He was recently released from follow ups at MD Anderson (yay, no more traveling to Houston for business, we can now visit our long lost Houston friends on vacation instead of in hospital rooms!) and released from neurosurgery, probably a blessing in more ways than one since his neurosurgeon is leaving KU Med, and his neurologist has decided if he stays on this track we can start weaning medications at our next visit. Hopefully he will outgrow these seizures after all! This time next week, I will have a full fledged 7th grader in my house!!! Although he has been in the middle school for two years, this year he loses recess, has to change out for gym, and has to switch rooms for each class. I am a tiny bit concerned that I will have a lost child wandering around the big scary middle school next Tuesday, but I am sure someone will help him find his way!! Wait, did you catch that? If he's wandering around the school to find his classes, what did he lose? His full time PARA!!!!! Although he will have his PARA in certain classes, for social interaction therapy, and as needed through the day, he is being let off his PARA leash which will give him an even better chance at being "just one of the kids" around school when he is capable. So, no worries on our life stacking against us, Bouga is doing fabulous!!!
On our fabulous, upbeat note, a few "On the Bright Side" thoughts on this whole Chiari business seeing as they have confirmed today that I will require surgery:
1- I don't have to spend lots of money on alcohol or funny drugs to make the world spin, see double, or feel like I am flying, I only have to change position quickly and weeeee, the same feeling LEGALLY and FREE!!
2-I don't have to wish for a water bed or a hammock or a baby swing to lull me to sleep, every time I lay down, my sensation rocks. How cool is that to be 31 years old and get rocked to sleep every night? Funny thing is, I can only just now brag about it, because until recently I didn't know that it was not normal, I thought everyone got rocked to sleep every night.
3- You get a free Redbox rental on your McDonald's drink today, I get a free brain surgery!! (God bless our fabulous place of employment and our phenomenal benefits and insurance plan for removing that worry from my mind!!!!)
4- I'm not an airhead, although some people would beg to differ. The fact is there's no room for air in there because my brain is too big for my head and is falling out of my skull!
5-I get to scare the crap out of all my friends at work who have not met my adorable twin sister. Visitor, patient, visitor, patient.... that will make them think for a few seconds before they decide who to draw blood from, and if I don't like the person coming to stick me maybe I can offer my sister up for sacrifice, after all, I'm going to be miserable in bed and why wouldn't she want to to anything she could to keep me from being in any more pain??? Lol!!!
Ok, goodnight our Warrior family, I will share more of life with Chiari on another day!
On our fabulous, upbeat note, a few "On the Bright Side" thoughts on this whole Chiari business seeing as they have confirmed today that I will require surgery:
1- I don't have to spend lots of money on alcohol or funny drugs to make the world spin, see double, or feel like I am flying, I only have to change position quickly and weeeee, the same feeling LEGALLY and FREE!!
2-I don't have to wish for a water bed or a hammock or a baby swing to lull me to sleep, every time I lay down, my sensation rocks. How cool is that to be 31 years old and get rocked to sleep every night? Funny thing is, I can only just now brag about it, because until recently I didn't know that it was not normal, I thought everyone got rocked to sleep every night.
3- You get a free Redbox rental on your McDonald's drink today, I get a free brain surgery!! (God bless our fabulous place of employment and our phenomenal benefits and insurance plan for removing that worry from my mind!!!!)
4- I'm not an airhead, although some people would beg to differ. The fact is there's no room for air in there because my brain is too big for my head and is falling out of my skull!
5-I get to scare the crap out of all my friends at work who have not met my adorable twin sister. Visitor, patient, visitor, patient.... that will make them think for a few seconds before they decide who to draw blood from, and if I don't like the person coming to stick me maybe I can offer my sister up for sacrifice, after all, I'm going to be miserable in bed and why wouldn't she want to to anything she could to keep me from being in any more pain??? Lol!!!
Ok, goodnight our Warrior family, I will share more of life with Chiari on another day!
Saturday, August 6, 2011
Cows and Test Results
First off, a bit of information for those who are new to our family, William LOVES cows, William at times is OBSESSED with cows, and very specifically black and white cows. It is some weird adoration in his little Autistic mind that if you analyze it, it has to do with black and white and all sorts of psychiatry stuff that is gobbly gook to most of us. Anyway, there are 2 new babies at the barn and yesterday I took the opportunity to take Will out to see the newborns since he very rarely gets to actually visit with a cow. Neither are black and white, but I took a chance anyway, and we hit a home run! I honestly thought I was not going to get him out of the stall of the little black one, he sat there star struck staring at her and gently petting her and if I would have let him he would have laid right down and gone to sleep with her for the night! He wanted so bad to hug her, but decided not to "just yet, because she is brand new and might get stressed." We will be visiting the babies daily until they move back out to their pastures, and I am officially the coolest mom in the world once again!! Yay me!!
It's been an eye opening, soul searching, emotional 3 weeks. I have sat down to blog a couple of times, but haven't had the words, or the thought track, or the motivation, to put anything on the screen. I've read and re-read my blogs from Will's journey thinking that I would find something in there that would spark something in me to write, but nothing. In fact sometimes I would look at his entries and wonder where on earth those words came from!!! So, a bit scattered brained and I am sure leaving TONS of information out, here's what's going on with me.
After the whirlwind week since my first MRI, I have been stalled out for almost 3 weeks awaiting the CINE MRI that would show the cerebral spinal fluid flow in and out of my brain and of course give us an actual head MRI since my diagnosis was made off of a spinal MRI that only showed the very base of the skull. Although we know I have the syrinx and a syrinx is almost always surgical, they needed to know if my Chiari was severe enough that it was blocking spinal fluid flow. Apparently this is another determining factor for surgery verses medicinal treatments, and would tell us if surgery was needed sooner than later. I was told that as soon as the MRI was done I was to call neurosurgery and let them know, then after they look at it they would either call me with an appointment date or call me with an OR date.
The CINE MRI was on Thursday and I went by myself. For those that have been around for years, you know that me going to the hospital for tests (usually for Will, but still...) has been a topic of contention. I live and breathe the medical world and for me it is no big deal to go to work and sit in a waiting room, have IVs started, tests run, etc. I would prefer to save the offers for company and a second ear for hospitalizations and when we "need" people. Again, those that have been around go ahead and laugh because you know that I have yet to say "I need you!!" when we have something going on. So once again I went off to the hospital by myself, after all, I JUST had an MRI last month, and no one was going to tell me any results or big news anyway. I check in, get my wrist band and sit down to wait... probably what should be the most uneventful and boring part of the entire day. Ummm, nope!! I look down at the wrist band on my arm, a band I have seen tons of times over the years, and I see "Attending: Pollack, Ania", not my family medicine doctor, not an ED doctor (with me and my horse escapades the ED docs have seen me a few times on their table as well), not my rheumatologist... Ania Pollack is my new doctor, my neurosurgeon. This was the first time I had seen any of it in official black and white hospital record print. Reality check, this is no longer medical terminology I am rattling off about a patient or a surreal dream that I am not quite sure is happening, this is real, this is happening, and this is me!! So there I sat in the Radiology waiting room bawling my eyes out, and I am sure everyone thought I had lost my mind! Somehow I get my act together, get through the IV, the MRI, and the drive home, bury myself in my bed with my 20 pillows and sleep my panic away.
Friday was an appointment with my regular doctor to touch base. Although I had briefly thought she MIGHT be able to tell me Thursday's MRI results, I figured even if she could, she wouldn't, so I traipse off to the hospital once again on my own. I sit down in the beautiful new exam room and start talking to the med student and my doctor about all the tests and news from the last month, including Thursday's MRI that "neurosurgery is supposed to call me about soon". As I say that last part, the med student turns the screen of the computer she is look at towards me. I scan the screen quickly, I'm familiar with the layout from charting and exams for our patients, and I see CINE MRI OFFICIAL REPORT. Here is where I realize not only should I have probably brought someone along with me, I realize I NEEDED someone with me. Ok, from now on, you guys win, you guys can come, I admit it, this time around I can't stay in health care mode and deal with stuff "later", I can't be the strong mom that you all have looked at over the years and said "I don't know how you do it without losing it." Apparently when it is in MY head I cannot separate the news and details from the emotions, I can not do this without losing it.
The MRI confirmed the previous diagnosis of Chiari 1 Malformation with a Syringomyelia at C3-C6 with protrusions of the C6 and C-7 disc and extremely diminished cerebral spinal fluid flow. Big crazy words simplified- this MRI agreed with the first one that I have a narrowed base of my skull that is pushing my brain into my spinal cord, that there is a gathering of spinal fluid INSIDE my spinal cord, and showed us that there is a block in the flow of my cerebral spinal fluid from my spinal canal to my brain. I've gone back and forth between hoping the flow would be effected so that there was something to correct and possibly take away or at least improve my symptoms and hoping that it was not, because after all this is spine and brain surgery and you really never want something to be seriously wrong with yourself... at least no normal person does. Now we have the pieces of the puzzle that neurosurgery wanted, and I get to wait for neurosurgery's phone call and my next set of directions. Have I mentioned that patience is NOT a virtue I possess? If I haven't, or you don't know that tidbit of info about me, PATIENCE IS NOT A VIRTUE I POSSESS!! Anyone know where you can buy patience? Anyone know a sorceress that can conjure up a patience spell for me? Somehow, I think I am going to have to figure out what this patience thing is all about....
It's been an eye opening, soul searching, emotional 3 weeks. I have sat down to blog a couple of times, but haven't had the words, or the thought track, or the motivation, to put anything on the screen. I've read and re-read my blogs from Will's journey thinking that I would find something in there that would spark something in me to write, but nothing. In fact sometimes I would look at his entries and wonder where on earth those words came from!!! So, a bit scattered brained and I am sure leaving TONS of information out, here's what's going on with me.
After the whirlwind week since my first MRI, I have been stalled out for almost 3 weeks awaiting the CINE MRI that would show the cerebral spinal fluid flow in and out of my brain and of course give us an actual head MRI since my diagnosis was made off of a spinal MRI that only showed the very base of the skull. Although we know I have the syrinx and a syrinx is almost always surgical, they needed to know if my Chiari was severe enough that it was blocking spinal fluid flow. Apparently this is another determining factor for surgery verses medicinal treatments, and would tell us if surgery was needed sooner than later. I was told that as soon as the MRI was done I was to call neurosurgery and let them know, then after they look at it they would either call me with an appointment date or call me with an OR date.
The CINE MRI was on Thursday and I went by myself. For those that have been around for years, you know that me going to the hospital for tests (usually for Will, but still...) has been a topic of contention. I live and breathe the medical world and for me it is no big deal to go to work and sit in a waiting room, have IVs started, tests run, etc. I would prefer to save the offers for company and a second ear for hospitalizations and when we "need" people. Again, those that have been around go ahead and laugh because you know that I have yet to say "I need you!!" when we have something going on. So once again I went off to the hospital by myself, after all, I JUST had an MRI last month, and no one was going to tell me any results or big news anyway. I check in, get my wrist band and sit down to wait... probably what should be the most uneventful and boring part of the entire day. Ummm, nope!! I look down at the wrist band on my arm, a band I have seen tons of times over the years, and I see "Attending: Pollack, Ania", not my family medicine doctor, not an ED doctor (with me and my horse escapades the ED docs have seen me a few times on their table as well), not my rheumatologist... Ania Pollack is my new doctor, my neurosurgeon. This was the first time I had seen any of it in official black and white hospital record print. Reality check, this is no longer medical terminology I am rattling off about a patient or a surreal dream that I am not quite sure is happening, this is real, this is happening, and this is me!! So there I sat in the Radiology waiting room bawling my eyes out, and I am sure everyone thought I had lost my mind! Somehow I get my act together, get through the IV, the MRI, and the drive home, bury myself in my bed with my 20 pillows and sleep my panic away.
Friday was an appointment with my regular doctor to touch base. Although I had briefly thought she MIGHT be able to tell me Thursday's MRI results, I figured even if she could, she wouldn't, so I traipse off to the hospital once again on my own. I sit down in the beautiful new exam room and start talking to the med student and my doctor about all the tests and news from the last month, including Thursday's MRI that "neurosurgery is supposed to call me about soon". As I say that last part, the med student turns the screen of the computer she is look at towards me. I scan the screen quickly, I'm familiar with the layout from charting and exams for our patients, and I see CINE MRI OFFICIAL REPORT. Here is where I realize not only should I have probably brought someone along with me, I realize I NEEDED someone with me. Ok, from now on, you guys win, you guys can come, I admit it, this time around I can't stay in health care mode and deal with stuff "later", I can't be the strong mom that you all have looked at over the years and said "I don't know how you do it without losing it." Apparently when it is in MY head I cannot separate the news and details from the emotions, I can not do this without losing it.
The MRI confirmed the previous diagnosis of Chiari 1 Malformation with a Syringomyelia at C3-C6 with protrusions of the C6 and C-7 disc and extremely diminished cerebral spinal fluid flow. Big crazy words simplified- this MRI agreed with the first one that I have a narrowed base of my skull that is pushing my brain into my spinal cord, that there is a gathering of spinal fluid INSIDE my spinal cord, and showed us that there is a block in the flow of my cerebral spinal fluid from my spinal canal to my brain. I've gone back and forth between hoping the flow would be effected so that there was something to correct and possibly take away or at least improve my symptoms and hoping that it was not, because after all this is spine and brain surgery and you really never want something to be seriously wrong with yourself... at least no normal person does. Now we have the pieces of the puzzle that neurosurgery wanted, and I get to wait for neurosurgery's phone call and my next set of directions. Have I mentioned that patience is NOT a virtue I possess? If I haven't, or you don't know that tidbit of info about me, PATIENCE IS NOT A VIRTUE I POSSESS!! Anyone know where you can buy patience? Anyone know a sorceress that can conjure up a patience spell for me? Somehow, I think I am going to have to figure out what this patience thing is all about....
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