Up too late again, but the rage is still vexing me. So I will list some of my grievances, to try to release some of the tension.
I'm disgusted with the media and with the frivolous lawsuits and with the hateful slander against the leaders in our field.
It has also left me lost and confused. I don't know what to do with myself, knowing that the next surgery should be the last one...the one that puts me closer to "normal". But when can this surgery take place?
I'm lucky. I have to wait for surgery anyways, because I'm waiting for my bones to grow more dense before my fusion is revised.
But others are ready for surgery now, and for this ridiculous reason, they can't have the surgeons they trust perform them.
The hospital is clearly at fault for the scheduling situation, in my uninformed opinion.
I don't know about seeing any other doctor. I just can't handle being rejected, humiliated, or disappointed anymore.
At least Dr. Menezes would not even schedule an appointment unless he thought he could help me. Maybe I should try.
But then I feel like a traitor to my doctors at TCI, whom I believe in.
But waiting and waiting and waiting for my bone density to improve and for this controversy to pass just seems unbearable right now, especially in my very agitated state of mind.
ARGH!
I really want to yell and scream and cry and hit things.
Again, I don't think my rage is directly caused by this TCI controversy. It's more about my general dislike for this point in my life.
Work is hard, because my body is not well enough to be working at all. So I hate it.
My body sucks, so I spend much of my time wasting away on this couch, contributing nothing to the world.
I am in so much freaking pain, and I don't even let people know. My pain is so bad. Everything hurts so much. My head is freaking exploding. It feels like my eyes will pop out, along with my brain bursting through my temples and through the hole in the back of my head. My joints hurt when I walk, or even sit up. My muscles throughout my body ache day and night. My spine feels like a collapsed accordion. And did I mention my head??? It never stops. EVER!!!
I don't know when my bones will be stronger. I don't know if I should pay out-of-pocket for the August DEXA scan, because if my bones don't show enough improvement by then, it would all be wasted. I don't know how I can possibly wait until next January for a DEXA scan. Days pass so freaking slowly. Hours pass so slowly. How could I wait EIGHT FRIGGING MONTHS???
And I don't know if this surgery will even help, because so many people end up in worse pain afterwards.
I have to do a bunch of crap to get the referral process started with Dr. Menezes. But who knows if he'll even see me?
And I'm trying to participate in life as much as I need to. But it is so hard. I have to go to work four days a week, whether my body wants to or not. I have host two piano recitals in the next two weeks, which are a huge drain on energy. I have to attend a family wedding the same weekend as one of the piano recitals. I'm really excited to be invited...I just wish it weren't so hard for me. I'm planning summer events. I need to recruit new students, because plenty seem to want to take the summer off. I would like to visit my family in Florida with my dad. I would like to go to the ASAP conference in Madison. I would like to see a musical at Broadway in Chicago. I would like to visit family in California with my mom. Obviously, financial concerns contribute to a lot of these issues...actually all of them.
So, I guess I have plenty of reasons to be mad. Maybe they've just all come together. I just can't stand it right now. I'm so angry for so many reasons. I'm so frustrated, I just can't stand it. I hate my life right now. I love the people in my life. But I still hate my life, for the reasons listed above.
Thursday, May 14, 2009
Wednesday, May 13, 2009
Rage
I've been calling it crabbiness, but since Sunday night, I have had a ball of rage inside of me. I've been trying to contain it, but it's coming out as me just being mean. I actually feel like screaming and yelling and punching things...and probably hysterically crying for a long time, too. I have to assume that this rage is mostly caused by some imbalance of neurotransmitters in my brain, because I don't have a valid rational reason for it.
I am generally upset about the huge controversy and cloud of doubt surrounding TCI right now. I hate that people are saying so many hateful things about the pioneers in the Chiari field.
I am also stressed because my schedule is getting busy with recitals coming up so quickly.
I'm frustrated as ever about my state of health. My body fails me daily, even if I pretend otherwise. I am in so much pain all the time. There is one surgery left that may help me. But it is a mystery when this could possibly happen. Even if it does happen, who knows if it will help, and I will have so much extra pain to go through to survive it.
But none of this is proper justification for the amount of rage inside of me. So I blame a faulty brain. I just hope I don't hurt too many more people as I try to contain the rage. Hopefully, it will pass soon.
I am generally upset about the huge controversy and cloud of doubt surrounding TCI right now. I hate that people are saying so many hateful things about the pioneers in the Chiari field.
I am also stressed because my schedule is getting busy with recitals coming up so quickly.
I'm frustrated as ever about my state of health. My body fails me daily, even if I pretend otherwise. I am in so much pain all the time. There is one surgery left that may help me. But it is a mystery when this could possibly happen. Even if it does happen, who knows if it will help, and I will have so much extra pain to go through to survive it.
But none of this is proper justification for the amount of rage inside of me. So I blame a faulty brain. I just hope I don't hurt too many more people as I try to contain the rage. Hopefully, it will pass soon.
Tuesday, May 12, 2009
Singing...such a bad idea
So I was teaching a piano lesson tonight, and the parents requested that I teach the student some voice, as well. There were multiple problems with this situation. #1 There was no piano bench or chair of any kind to sit on by the piano, so I was either standing, kneeling, or sitting on the floor. That caused pain in my joints and dizziness/POTS symptoms from standing. #2 Teaching a voice lesson involves some amount of singing. I also had to work on diaphragmatic breathing with the student. I have some vocal know-how, because I've taken some voice lessons, and I've been in choirs my whole life. But I can no longer sing. It causes so many symptoms for me.
So, I left the lesson falling down in the driveway, and scarily making my way home. I then had to walk to the house, which I did after many more falls on the pavement. Now that I'm home, my head is absolutely exploding, and I still have no sense of balance.
So, I've definitely learned that singing is still on the list of BANNED ACTIVITIES.
If only I could convince the parents of the student that I am unable to provide vocal instruction. I could try to only give instruction, but demonstration is always necessary. I'm very frustrated that I made myself worse, even though I knew better.
So, I left the lesson falling down in the driveway, and scarily making my way home. I then had to walk to the house, which I did after many more falls on the pavement. Now that I'm home, my head is absolutely exploding, and I still have no sense of balance.
So, I've definitely learned that singing is still on the list of BANNED ACTIVITIES.
If only I could convince the parents of the student that I am unable to provide vocal instruction. I could try to only give instruction, but demonstration is always necessary. I'm very frustrated that I made myself worse, even though I knew better.
Chiari news / bad day / symptom watch
As I learned from my friend, Kristen, Dr. Milhorat, the director and founder of The Chiari Institute, is stepping down from his position as Chief of Neurosurgery at the Northshore University Hospital. I don't know if this is related to the suspension last month. I hear that he will continue helping with research. But of course, it is sad for me, because he and Dr. Bolognese have been my surgical team for both my first fusion and my detethering. I will still trust Dr. Bolognese with my life, but I prefer the team I've come to rely on.
I know Dr. Milhorat has come under some scrutiny recently, but I believe that he is an amazing man. He is responsible for spearheading so much of the research that has been done on Chiari in the last two decades. He brought Chiari into the light. He continues to work so hard to more fully understand the many problems associated with this wretched malformation. Many people owe their lives to this man, directly and indirectly.
Personally, today was a long and frustrating day. I was very irritable. I'm sorry to my family that had to deal with this crabbiness. Nonetheless, the work is done. I'm looking forward to the next two weekends, when my students will be playing in recitals. It's a lot of work, but worth it. As always, I just hope for my body to be up for the challenge. During an ideal weekend, I rest essentially the whole time, to help me recover from the week. That won't be possible for the next two weekends, due to two recitals and a wedding. It's a lot to expect from my body. I hope I make it through. That is why I gave myself and my students the following week off. I know I'll be counting down the days in my head until April 25th.
My choking has continued. Each time I have a choking spell, I get a massive headache, due to not breathing for so long, and coughing so hard. The bronchospasms continue for the rest of the day. I've had 4 days in a row with choking spells now. Clarification: I swallow the wrong way often. Usually, just a few coughs will correct that problem. But in a major choking spell, I cough and cough, but then I am unable to inhale air for a prolonged period of time. There is nothing to do for it (like the Heimlich maneuver), because I tend to choke on water. It takes time, but I eventually catch my breath each time. Unfortunately, I manage to scare myself and the people around me, as each time it seems that I may not catch my breath. However, I have never had a choking spell lead to loss of consciousness, so I hope my family can try not to worry. It is scary in the moment, though.
My headache is pretty high right now, definitely time for bed. The shortness of breath came back for the first half of the day (from 12 to 4). Once I'd had 4 salt pills and 2 doses of Midodrine, I finally seemed to be able to catch my breath. This seems to mean that the more fluid I can retain, the less hard my heart has to work. At least something helps, some of the time. My neck and shoulder muscles are so tight. My shoulders seem to hunch a lot of the time. When I try to bring my shoulders back to a normal position, I feel pulling of very tight scalene muscles. This would take some major massage therapy to work out. Especially since it comes back so easily.
I've also had many episodes of abdominal pain, lately. I don't believe that it is related to my removed gallbladder in any way. I sometimes tolerate food just fine, but other times, I get very sick from the same foods. I know I could go back on the IBS diet, but I'm just not ready to do that without trying a few other things, first.
Plans:
*See Dr. Aziz, gastroenterologist
*Contact Dr. Shah re: referal to Dr. Menezes
*Contact imaging center in New York to get an extra copy of last year's scans
I know Dr. Milhorat has come under some scrutiny recently, but I believe that he is an amazing man. He is responsible for spearheading so much of the research that has been done on Chiari in the last two decades. He brought Chiari into the light. He continues to work so hard to more fully understand the many problems associated with this wretched malformation. Many people owe their lives to this man, directly and indirectly.
Personally, today was a long and frustrating day. I was very irritable. I'm sorry to my family that had to deal with this crabbiness. Nonetheless, the work is done. I'm looking forward to the next two weekends, when my students will be playing in recitals. It's a lot of work, but worth it. As always, I just hope for my body to be up for the challenge. During an ideal weekend, I rest essentially the whole time, to help me recover from the week. That won't be possible for the next two weekends, due to two recitals and a wedding. It's a lot to expect from my body. I hope I make it through. That is why I gave myself and my students the following week off. I know I'll be counting down the days in my head until April 25th.
My choking has continued. Each time I have a choking spell, I get a massive headache, due to not breathing for so long, and coughing so hard. The bronchospasms continue for the rest of the day. I've had 4 days in a row with choking spells now. Clarification: I swallow the wrong way often. Usually, just a few coughs will correct that problem. But in a major choking spell, I cough and cough, but then I am unable to inhale air for a prolonged period of time. There is nothing to do for it (like the Heimlich maneuver), because I tend to choke on water. It takes time, but I eventually catch my breath each time. Unfortunately, I manage to scare myself and the people around me, as each time it seems that I may not catch my breath. However, I have never had a choking spell lead to loss of consciousness, so I hope my family can try not to worry. It is scary in the moment, though.
My headache is pretty high right now, definitely time for bed. The shortness of breath came back for the first half of the day (from 12 to 4). Once I'd had 4 salt pills and 2 doses of Midodrine, I finally seemed to be able to catch my breath. This seems to mean that the more fluid I can retain, the less hard my heart has to work. At least something helps, some of the time. My neck and shoulder muscles are so tight. My shoulders seem to hunch a lot of the time. When I try to bring my shoulders back to a normal position, I feel pulling of very tight scalene muscles. This would take some major massage therapy to work out. Especially since it comes back so easily.
I've also had many episodes of abdominal pain, lately. I don't believe that it is related to my removed gallbladder in any way. I sometimes tolerate food just fine, but other times, I get very sick from the same foods. I know I could go back on the IBS diet, but I'm just not ready to do that without trying a few other things, first.
Plans:
*See Dr. Aziz, gastroenterologist
*Contact Dr. Shah re: referal to Dr. Menezes
*Contact imaging center in New York to get an extra copy of last year's scans
Saturday, May 9, 2009
Symptom watch
Woke up with a horrible headache today, and lots of pain. Back pain, left leg aching, exploding brain, ice pick over right eye, sharp abdominal pains, etc. I was meaning to skip my Provigil, but somehow took it anyway, so I guess I won't have a day of rest.
I've been keeping an accurate a complete symptom list for a while now. I figure it will be useful to have a very detailed list, to remind me of what I feel like right now. That way, when I have surgery again and start to recover, I will be able to start crossing symptoms out as I notice them leaving. (Thanks to Virginia for pointing out this spectacular use of the symptom list!)
So, here is my detailed and updated symptom list:
Symptoms as of May 2009
Headaches
Constant pressure headache (pushing out around the skull, esp. the top)
Constant occipital headache
Facial pain through cheekbones
Jaw pain--tires easily, making it difficult to chew
Eye pressure
“Sunken halo” headache pain (above the eyes and through the temples)
Sharp pain above one eye, radiating outward
Migraines are hormonal, pre-menstrual
Usually worsened by light and low sounds
Headaches that wake me up at night due to intensity
Most headache pain relieved with manual or mechanical cervical traction
Nausea
decreased appetite
smaller range of foods seem palatable
often skip meals
Fatigue
Overall sick feeling
Spinal pain
Lumbar spine pain in area of tethered cord surgery
Thoracic spine pain between the shoulder blades, worsened with deep breathing
Cervical spine pain, especially in the 3-4 vertebra below the fusion
Tachycardia
Orthostatic intolerance
Exercise intolerance--becoming winded after only 3 or 4 stairs
Heart working extra hard and pounding
Shortness of breath
Heartbeat irregularities/arrhythmias
Low blood pressure
From standing (5 minutes still, 15 minutes walking)
Spells several times a week--semi-conscious, helped with salt tablets and water
Necessitates a wheelchair for any trip over 5 minutes
Falling
Falls several times a day
Sudden weakness
Sudden loss of balance
Heavy head
Swallowing problems
Trouble swallowing pills-need chin down, chest out, sometimes gets stuck
Choke on food and water
Weak gag reflex
Wake up sweating and shivering
Out of it, easily startled, “dazed and confused”, zoning out
Difficulty concentrating, thinking of words
Auditory processing dysfunction
I can only understand what is being said to me if there is no background/conflicting noise.
I use subtitles on the television whenever possible to help with auditory comprehension.
Sleep problems
Often awake during the night at least once or twice, unrelated to bladder
Bone and joint pain
Muscle aches
Skin sensitivity/allodynia
Poor proprioception, losing footing, can’t walk on uneven ground
Vertigo spells (spontaneous, not dependent on posture)
Clumsiness, loss of balance, decreased reflexes (slow to catch myself or realize I’m falling)
Pupil dilation
Very large pupils most of the time
Often non-reactive
Muscle spasms
Sharp pain and burning in shoulders
Painful tension in neck
Shoulder hunch due to chest tension
Temperature control problems
Patches of goosebumps
Chills
Overheating easily
Excessive sweating
Temperature variation from 96.5-100.5 with no sign of infection
Episodes of cranio-cervical instability
Vertigo
Flushing
Nausea
Pounding heart
Chills
Shortness of breath
Tingling in left hand
Seeing stars around visual field for no apparent reason
Tinnitus (occasional)
Tingling in scalp
Toes are almost always cold...bath water feels boiling hot to my toes
Intense itchiness, leading to scratched-off skin
Feelings of pain/tightness in chest
Floating sensation
Hormonal imbalance--symptoms of PMDD
Low stress tolerance
Sensory overload--overwhelmed by loud noises and bright lights (movie theaters, crowds of people)
Hiccups--usually when going from horizontal to vertical
Emotional:
Depression
Anxiety
Irritability
Rage attacks
Panic attacks
Erratic emotions
Digestive:
Bloating and abdominal pain after eating, sometimes mild, sometimes severe and excrutiating
I've been keeping an accurate a complete symptom list for a while now. I figure it will be useful to have a very detailed list, to remind me of what I feel like right now. That way, when I have surgery again and start to recover, I will be able to start crossing symptoms out as I notice them leaving. (Thanks to Virginia for pointing out this spectacular use of the symptom list!)
So, here is my detailed and updated symptom list:
Symptoms as of May 2009
Headaches
Constant pressure headache (pushing out around the skull, esp. the top)
Constant occipital headache
Facial pain through cheekbones
Jaw pain--tires easily, making it difficult to chew
Eye pressure
“Sunken halo” headache pain (above the eyes and through the temples)
Sharp pain above one eye, radiating outward
Migraines are hormonal, pre-menstrual
Usually worsened by light and low sounds
Headaches that wake me up at night due to intensity
Most headache pain relieved with manual or mechanical cervical traction
Nausea
decreased appetite
smaller range of foods seem palatable
often skip meals
Fatigue
Overall sick feeling
Spinal pain
Lumbar spine pain in area of tethered cord surgery
Thoracic spine pain between the shoulder blades, worsened with deep breathing
Cervical spine pain, especially in the 3-4 vertebra below the fusion
Tachycardia
Orthostatic intolerance
Exercise intolerance--becoming winded after only 3 or 4 stairs
Heart working extra hard and pounding
Shortness of breath
Heartbeat irregularities/arrhythmias
Low blood pressure
From standing (5 minutes still, 15 minutes walking)
Spells several times a week--semi-conscious, helped with salt tablets and water
Necessitates a wheelchair for any trip over 5 minutes
Falling
Falls several times a day
Sudden weakness
Sudden loss of balance
Heavy head
Swallowing problems
Trouble swallowing pills-need chin down, chest out, sometimes gets stuck
Choke on food and water
Weak gag reflex
Wake up sweating and shivering
Out of it, easily startled, “dazed and confused”, zoning out
Difficulty concentrating, thinking of words
Auditory processing dysfunction
I can only understand what is being said to me if there is no background/conflicting noise.
I use subtitles on the television whenever possible to help with auditory comprehension.
Sleep problems
Often awake during the night at least once or twice, unrelated to bladder
Bone and joint pain
Muscle aches
Skin sensitivity/allodynia
Poor proprioception, losing footing, can’t walk on uneven ground
Vertigo spells (spontaneous, not dependent on posture)
Clumsiness, loss of balance, decreased reflexes (slow to catch myself or realize I’m falling)
Pupil dilation
Very large pupils most of the time
Often non-reactive
Muscle spasms
Sharp pain and burning in shoulders
Painful tension in neck
Shoulder hunch due to chest tension
Temperature control problems
Patches of goosebumps
Chills
Overheating easily
Excessive sweating
Temperature variation from 96.5-100.5 with no sign of infection
Episodes of cranio-cervical instability
Vertigo
Flushing
Nausea
Pounding heart
Chills
Shortness of breath
Tingling in left hand
Seeing stars around visual field for no apparent reason
Tinnitus (occasional)
Tingling in scalp
Toes are almost always cold...bath water feels boiling hot to my toes
Intense itchiness, leading to scratched-off skin
Feelings of pain/tightness in chest
Floating sensation
Hormonal imbalance--symptoms of PMDD
Low stress tolerance
Sensory overload--overwhelmed by loud noises and bright lights (movie theaters, crowds of people)
Hiccups--usually when going from horizontal to vertical
Emotional:
Depression
Anxiety
Irritability
Rage attacks
Panic attacks
Erratic emotions
Digestive:
Bloating and abdominal pain after eating, sometimes mild, sometimes severe and excrutiating
Wednesday, May 6, 2009
A Big Day in the Chiari World
Well, I'd like to ignore this topic, but it has come to be such an important part of the Chiari world today, so I will mention the events of the day, give my thoughts, and move on.
An article was written in a New York newspaper about my two main neurosurgeons from The Chiari Institute. Clearly, this article only gave part of the story. But the main point is that both Dr. Milhorat and Dr. Bolognese were suspended after Dr. B was not present to perform surgery, when the patient had already been anesthetized. The surgery in question took place on April 10. There are several missing facts in this article. Dr. Bolognese had a family emergency during the month of April, which resulted in many surgeries being postponed for several weeks. I know that I have some friends that were waiting for surgery, and they had to reschedule. One family of which I am aware was even reimbursed for their travel expenses. It only makes sense that the surgery in question was the first surgery scheduled after Dr. Bolognese's emergency. And I am disposed to believe that a miscommunication took place, allowing the surgery not to be cancelled. However, this does not explain why the entire surgical team prepared the patient for surgery without having any contact with the lead surgeon. I feel that this may be a case of misplaced blame, or of the hospital trying to protect itself by blaming the missing doctor, not the lack of coordination within the hospital.
I would ask anyone reading this to withhold judgement on these two remarkable doctors, who are the pioneers in the treatment of Chiari-related conditions. Due to confidentiality restrictions, it is quite possible that we may never know the full story. However, many in the Chiari world owe our lives to these two doctors, and we hate to see this kind of slander against them. To have The Chiari Institute discredited in any way is a serious blow to the thousands of patients that have found validation for their disease in the face of local ignorance.
The Chiari Institute is on the cutting edge of neuro-medicine. This means that they are constantly scrutinized for their work. Without them, new treatments would not be found. And yes, this does sometimes involve performing surgeries that are "unproven". How else would they ever become "proven"?
I will not say that I have had constant, unwavering support of The Chiari Institute, myself. But I've always felt that they are the best option available. That doesn't mean that I cannot seek outside opinions. In fact, if my fusion revision is postponed, I am considering seeing another fusion specialist, Dr. Arnold Menezes. The option to seek outside opinions is available to every patient at The Chiari Institute.
I'm sure I had other things to say today, but my mind has been distracted by the constant debate that has taken over the Chiari world. I'll try to list the other issues on my mind today, if nothing else, so I can stop thinking and get some sleep.
*I'm concerned that my body is already building up a tolerance to the Provigil. My dose has been largely ineffective so far this week. I have had difficulty concentrating and staying awake, even taking twice my usual dose. One of my biggest fears has always been having the medicines that actually help me stop working. This includes Provigil and pain medications. This is why I take strong pain medication so sparingly; I fear requiring more and more medicine to achieve the same level of pain relief. To have this become a concern so soon for my Provigil is very worrisome. It's become clear that my body really works better on this medication. I will have to experiment with skipping days to see if I can find a dose where the medication helps when I need it. This may just be my body's way of complaining that I need more rest.
*I don't expect to hear back from The Chiari Institute in the next few days, due to the media harassment. However, I am anxious to hear if June received my test results and Dr. Camacho's recommendations. I am still holding on to the small possibility that Dr. Bolognese would approve surgery for me based on my improving blood counts. Of course, I understand that Dr. Bolognese's schedule will be backed up for quite some time now. I can't expect a prompt response. I will just have to be patient to hear back on this issue.
*This does lead me to wonder if Dr. Menezes would be willing to see me in the meantime. Dr. Arnold Menezes practices in Iowa, and specializes in skull-base deformities with chiari, like retroflexed odontoid. His experience focuses on transoral odontoidectomies combined with cranio-cervical fixation. I've heard that he is a very picky doctor, when it comes to choosing his patients. He turns away many that are referred to see him. However, a friend told me that he actually has an interest in revising cranio-cervical fusions. So maybe I would be just the type of patient he would be interested in seeing. I would certainly like to hear his opinion on the state of my skull and spine. However, I would need to see my general practitioner and ask for another referall, as Dr. Menezes only sees referred patients. I would also need to get together any recent imaging I've had done. That might involve requesting a copy from the imaging place in New York. Clearly, this would take some time to work out. The to-do list never ends.
*The American Syringomyelia and Chiari Awareness Project holds a national conference every year. This year's conference is taking place in Madison, WI. If I am not recovering from surgery at that time, I am hoping to attend some or all of the conference. It would be a great opportunity to meet many people with Chiari and learn a lot from leading Chiari doctors.
*Symptoms this week: brain fog, exploding brain-type headache, fatigue, aching pain throughout the body, dizziness, choking, hiccups, falling into things
That's all for today, but I'm sure I'll have more to say, once I can think straight again.
An article was written in a New York newspaper about my two main neurosurgeons from The Chiari Institute. Clearly, this article only gave part of the story. But the main point is that both Dr. Milhorat and Dr. Bolognese were suspended after Dr. B was not present to perform surgery, when the patient had already been anesthetized. The surgery in question took place on April 10. There are several missing facts in this article. Dr. Bolognese had a family emergency during the month of April, which resulted in many surgeries being postponed for several weeks. I know that I have some friends that were waiting for surgery, and they had to reschedule. One family of which I am aware was even reimbursed for their travel expenses. It only makes sense that the surgery in question was the first surgery scheduled after Dr. Bolognese's emergency. And I am disposed to believe that a miscommunication took place, allowing the surgery not to be cancelled. However, this does not explain why the entire surgical team prepared the patient for surgery without having any contact with the lead surgeon. I feel that this may be a case of misplaced blame, or of the hospital trying to protect itself by blaming the missing doctor, not the lack of coordination within the hospital.
I would ask anyone reading this to withhold judgement on these two remarkable doctors, who are the pioneers in the treatment of Chiari-related conditions. Due to confidentiality restrictions, it is quite possible that we may never know the full story. However, many in the Chiari world owe our lives to these two doctors, and we hate to see this kind of slander against them. To have The Chiari Institute discredited in any way is a serious blow to the thousands of patients that have found validation for their disease in the face of local ignorance.
The Chiari Institute is on the cutting edge of neuro-medicine. This means that they are constantly scrutinized for their work. Without them, new treatments would not be found. And yes, this does sometimes involve performing surgeries that are "unproven". How else would they ever become "proven"?
I will not say that I have had constant, unwavering support of The Chiari Institute, myself. But I've always felt that they are the best option available. That doesn't mean that I cannot seek outside opinions. In fact, if my fusion revision is postponed, I am considering seeing another fusion specialist, Dr. Arnold Menezes. The option to seek outside opinions is available to every patient at The Chiari Institute.
I'm sure I had other things to say today, but my mind has been distracted by the constant debate that has taken over the Chiari world. I'll try to list the other issues on my mind today, if nothing else, so I can stop thinking and get some sleep.
*I'm concerned that my body is already building up a tolerance to the Provigil. My dose has been largely ineffective so far this week. I have had difficulty concentrating and staying awake, even taking twice my usual dose. One of my biggest fears has always been having the medicines that actually help me stop working. This includes Provigil and pain medications. This is why I take strong pain medication so sparingly; I fear requiring more and more medicine to achieve the same level of pain relief. To have this become a concern so soon for my Provigil is very worrisome. It's become clear that my body really works better on this medication. I will have to experiment with skipping days to see if I can find a dose where the medication helps when I need it. This may just be my body's way of complaining that I need more rest.
*I don't expect to hear back from The Chiari Institute in the next few days, due to the media harassment. However, I am anxious to hear if June received my test results and Dr. Camacho's recommendations. I am still holding on to the small possibility that Dr. Bolognese would approve surgery for me based on my improving blood counts. Of course, I understand that Dr. Bolognese's schedule will be backed up for quite some time now. I can't expect a prompt response. I will just have to be patient to hear back on this issue.
*This does lead me to wonder if Dr. Menezes would be willing to see me in the meantime. Dr. Arnold Menezes practices in Iowa, and specializes in skull-base deformities with chiari, like retroflexed odontoid. His experience focuses on transoral odontoidectomies combined with cranio-cervical fixation. I've heard that he is a very picky doctor, when it comes to choosing his patients. He turns away many that are referred to see him. However, a friend told me that he actually has an interest in revising cranio-cervical fusions. So maybe I would be just the type of patient he would be interested in seeing. I would certainly like to hear his opinion on the state of my skull and spine. However, I would need to see my general practitioner and ask for another referall, as Dr. Menezes only sees referred patients. I would also need to get together any recent imaging I've had done. That might involve requesting a copy from the imaging place in New York. Clearly, this would take some time to work out. The to-do list never ends.
*The American Syringomyelia and Chiari Awareness Project holds a national conference every year. This year's conference is taking place in Madison, WI. If I am not recovering from surgery at that time, I am hoping to attend some or all of the conference. It would be a great opportunity to meet many people with Chiari and learn a lot from leading Chiari doctors.
*Symptoms this week: brain fog, exploding brain-type headache, fatigue, aching pain throughout the body, dizziness, choking, hiccups, falling into things
That's all for today, but I'm sure I'll have more to say, once I can think straight again.
Tuesday, May 5, 2009
The Mask
It was a busy weekend. Friday night, I went to my old high school (yes, the hell-house itself) to see the spring musical. It was a lot of fun. Then, Saturday, we had a benefit concert combining my church and my grandma's church. A lot of the family were there and participating, so it was really good that I could be there. It was a fun day. I rested whenever I could, but was still out of energy by the end of the day. Sunday, I stayed with Gus. Did a little sorting around the apartment. Otherwise, we just had a nice day.
Monday was a difficult day. I was very fatigued for most of the day. I took a double dose of Provigil before work. That meant that I had what it took to make it through my lessons. And of course, I smiled, and everyone thought that I looked so healthy! But as soon as I got home, I crashed. Every cell in my body hurt. I couldn't move. I fell asleep early, and slept for 12 hours. I'm still exhausted today. My mind is also very distracted, so I'm sorry if I'm not making much sense.
I'm so tired of people not being able to see through the mask. It's not like I can take the mask off. It would be unprofessional. And it's a great way to lose friends (I've learned this from experience). I must pretend to be happy and healthy, at least relatively so. Even though inside, I am in pain every day. I have symptoms every day. It is just so hard to live a lie.
My mind is wandering. I can't stay focused. So maybe I'll write more later.
Monday was a difficult day. I was very fatigued for most of the day. I took a double dose of Provigil before work. That meant that I had what it took to make it through my lessons. And of course, I smiled, and everyone thought that I looked so healthy! But as soon as I got home, I crashed. Every cell in my body hurt. I couldn't move. I fell asleep early, and slept for 12 hours. I'm still exhausted today. My mind is also very distracted, so I'm sorry if I'm not making much sense.
I'm so tired of people not being able to see through the mask. It's not like I can take the mask off. It would be unprofessional. And it's a great way to lose friends (I've learned this from experience). I must pretend to be happy and healthy, at least relatively so. Even though inside, I am in pain every day. I have symptoms every day. It is just so hard to live a lie.
My mind is wandering. I can't stay focused. So maybe I'll write more later.
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