This is the path the VP shunt takes.
Monday, April 30, 2007
Wednesday, April 25, 2007
Am I alone?
I was wondering if there who else shared my pain in the head. I decided to research and read other's stories. I think it is important to band together to help ourselves in a way that perhaps the doctors can not. I came across a site that seems to meet our needs.
MSN has created a community for those living with pseudotumor cerebri and their family members. The site operated by the manager, Heather, provides profiles of others and message boards for easy communicating. It also gives links to the IHRF, the Intercranial Hypertension Research Foundation, and the IH registry, which gives people an opportunity to sign up and learn about their own condition and others.
MSN has created a community for those living with pseudotumor cerebri and their family members. The site operated by the manager, Heather, provides profiles of others and message boards for easy communicating. It also gives links to the IHRF, the Intercranial Hypertension Research Foundation, and the IH registry, which gives people an opportunity to sign up and learn about their own condition and others.
What are the options?
People living with PTC are limited to cure choices. Most people will treat the disease with the prescribed amount diuretic they are given. For others weight loss and exercise may be suggested. In extreme cases, shunting is necessary.
My doctor told me I need to lose some excess baggage and take my Diamox and Celexa regularly as well as be examined by a surgeon for the possibility of a shunt.
A shunt is a long thin tube that allows excessive cerebrospinal fluid to drain out into another part of the body and ultimately be flushed out completely. A shunt can be placed in through the top of your head, which is called a ventriculoperitoneal shunt, or VP. The other called lumboperitoneal shunt, or LP, is considered less invasive and is placed in the lower spine area where it sits under your skin and runs to your stomach and empties. It is almost like a river dumping into the ocean.
Unfortunately, planting a shunt is a risky procedure. The shunts can become clogged and then require another surgery to adjust the valves. There is also a fear of infection because the shunt has invaded a precious part of the body, the brain.
I have visited over four surgeons and still wait for a doctor who will perform the surgery. It seems the consensus is to lose weight and stay on the pills for a lifetime. This is not working for me.
My doctor told me I need to lose some excess baggage and take my Diamox and Celexa regularly as well as be examined by a surgeon for the possibility of a shunt.
A shunt is a long thin tube that allows excessive cerebrospinal fluid to drain out into another part of the body and ultimately be flushed out completely. A shunt can be placed in through the top of your head, which is called a ventriculoperitoneal shunt, or VP. The other called lumboperitoneal shunt, or LP, is considered less invasive and is placed in the lower spine area where it sits under your skin and runs to your stomach and empties. It is almost like a river dumping into the ocean.
Unfortunately, planting a shunt is a risky procedure. The shunts can become clogged and then require another surgery to adjust the valves. There is also a fear of infection because the shunt has invaded a precious part of the body, the brain.
I have visited over four surgeons and still wait for a doctor who will perform the surgery. It seems the consensus is to lose weight and stay on the pills for a lifetime. This is not working for me.
Friday, April 6, 2007
Bad eye
This is an eye suffering from papilledema. There are blind spots, swelling and a blurred disc. Papilledema is the swelling of optic nerve.
The anatomy of the Optic Nerve makes it a sensitive marker for problems inside the brain. This nerve is a thick cord that connects the back of each eyeball and it's retina to the brain. In its short span between the brain and the eye, the Optic Nerve's whole surface is bathed by Cerebral Spinal Fluid (CSF). Although this fluid protects the nerve from sudden movement, even slight increases in the pressure of this fluid (from swelling of the brain) can affect the Optic Nerve, because it can compress the nerve around it's whole circumference in a "choking" manner. It is when this nerve is exposed to high pressure, or when it develops inflammation of its own that it can bulge into the back wall of the eyeball resulting in Papilledema.
Can you see?
So I knew the PTC gave me daily headaches and sometimes put me into seizures that made me lose my faculties but losing my vision too? This was getting to be a real pain in the ass.
My doctor warned me that my eye sight had the potential to deteriorate and surgery would be a necessary answer for any extensive amount of damage. Gee thanks doc!
It was called papilledema. Papilledema is a condition in which increased pressure in or around the brain causes the optic nerve to swell where it enters the eye. I didn't want to go blind ... I had to be repaired.
I was sent to Wills Eye Center, a part of Jefferson Hospital, located in Philadelphia. I was to meet Dr. Sergott, who specializes in patients with papilledema caused by PTC. I arrived and rode the elevator to the 12th floor for my visit. Once it was my turn I was taken to the back for a number of tests. My eyes were invaded by every intern, young doctor and nurse on staff. Finally the doctor came in. He was to do the tell tale test that would pull all the results together. He squirted a piss yellow substance into my eyes and left me alone for a few minutes. He came back and stretched my eyes wide open and began observing closely to what was going on. I could not see a damn thing ... something in the mysterious liquid that was sprayed into my eyes. After some looking he told me to wash my face and he would be back with some results for me.
I washed up and sat there frantic state. What was wrong and what would happen?
Dr.Sergott re-entered the room and began talking as his cronies stood back and took notes.
"You have the beginning stages of papilledema," he said in a stern voice.
He went on to explain what this meant for me. Basically in a few months I had lost my peripheral vision in my left eye and was showing classic signs of blind spots in both eyes. He assured me that I did not need a sheathing surgery yet and that my eye condition could improve over time, but that would be up to me. I would have to take my medicine daily and keep all of my doctor's appointments and come every 3 months for check-ups. I could do that if it meant no knife on my eyes. While I was there he did up the dosage of my Diamox to 1000 mg a day in order to try and better control the obvious over flow of fluid.
Fear set in. This was serious. It only took a few months to take perfect vision and screw it up. It only took a few seconds to make me loose my thoughts and fall to the floor anymore. I had to do whatever the doctor's said.
My doctor warned me that my eye sight had the potential to deteriorate and surgery would be a necessary answer for any extensive amount of damage. Gee thanks doc!
It was called papilledema. Papilledema is a condition in which increased pressure in or around the brain causes the optic nerve to swell where it enters the eye. I didn't want to go blind ... I had to be repaired.
I was sent to Wills Eye Center, a part of Jefferson Hospital, located in Philadelphia. I was to meet Dr. Sergott, who specializes in patients with papilledema caused by PTC. I arrived and rode the elevator to the 12th floor for my visit. Once it was my turn I was taken to the back for a number of tests. My eyes were invaded by every intern, young doctor and nurse on staff. Finally the doctor came in. He was to do the tell tale test that would pull all the results together. He squirted a piss yellow substance into my eyes and left me alone for a few minutes. He came back and stretched my eyes wide open and began observing closely to what was going on. I could not see a damn thing ... something in the mysterious liquid that was sprayed into my eyes. After some looking he told me to wash my face and he would be back with some results for me.
I washed up and sat there frantic state. What was wrong and what would happen?
Dr.Sergott re-entered the room and began talking as his cronies stood back and took notes.
"You have the beginning stages of papilledema," he said in a stern voice.
He went on to explain what this meant for me. Basically in a few months I had lost my peripheral vision in my left eye and was showing classic signs of blind spots in both eyes. He assured me that I did not need a sheathing surgery yet and that my eye condition could improve over time, but that would be up to me. I would have to take my medicine daily and keep all of my doctor's appointments and come every 3 months for check-ups. I could do that if it meant no knife on my eyes. While I was there he did up the dosage of my Diamox to 1000 mg a day in order to try and better control the obvious over flow of fluid.
Fear set in. This was serious. It only took a few months to take perfect vision and screw it up. It only took a few seconds to make me loose my thoughts and fall to the floor anymore. I had to do whatever the doctor's said.
Medicine Mambo
It seemed I was now the Queen of Medication ... yuck! Each day I popped 500 mg of Diamox, which is a diuretic used to flush out the unwanted fluid in my body. I also had to prescribed to pop 800 mg of Motrin 3 times a day. I would be a zombie. I took those only in emergencies. Emergency being a pain in my head that felt like an ice pick was ripping through my brain.
I was also given Topamax. This was supposed to be a preventative medicine for migraines, because besides the PTC, my brain was being over run by killer debilitating migraines. The Topamax made things worse. This medicine made my body so overly tired I could barely function and to boot I broke out in a rash which made my body resemble an enormous pimple. I had to stop immediately. Time to move onto something else. I was given another 3 medications before we found something that semi worked.
The problem was my doctor was at a stand still because there were only certain medications that he could mix with the PTC medication. That didn't leave much choice. I was finally given Celexa, a depression medicine. It was used in my situation because it helps my brain to relax and allow liquid to be absorbed.
The doctor also gave me a 12 pill pack for pain. If I begin to suffer from a severe headache from the PTC or migraine attack then I must take this nearly lethal pill to allow the pain to subside.
Figuring out my medicine routine took the doctor about 4 months. It seemed I was on my way to a stability.
I was also given Topamax. This was supposed to be a preventative medicine for migraines, because besides the PTC, my brain was being over run by killer debilitating migraines. The Topamax made things worse. This medicine made my body so overly tired I could barely function and to boot I broke out in a rash which made my body resemble an enormous pimple. I had to stop immediately. Time to move onto something else. I was given another 3 medications before we found something that semi worked.
The problem was my doctor was at a stand still because there were only certain medications that he could mix with the PTC medication. That didn't leave much choice. I was finally given Celexa, a depression medicine. It was used in my situation because it helps my brain to relax and allow liquid to be absorbed.
The doctor also gave me a 12 pill pack for pain. If I begin to suffer from a severe headache from the PTC or migraine attack then I must take this nearly lethal pill to allow the pain to subside.
Figuring out my medicine routine took the doctor about 4 months. It seemed I was on my way to a stability.
Wednesday, March 21, 2007
Shall we Tap?
It was September 13,2005, the sun was shining bright, the birds were chirping, and I was trying to force a waffle down my throat while my dad was parking the truck outside of my house. It was the day - the day of reckoning - the day for that big long cold silver needle to ease it's way up my back and into my spinal cavity. Yuck - I think I am gonna heave.
My dad got me together, put me in his truck and drove me to Dr.Rampal's office. Approaching the door I could feel the sweat building in my palms. I was scared shitless!
I went in, announced myself, and waited for my anticipated turn. The door squeaked and it was slightly ajar as a raspy voice called my name. No turning back now.
I went to the procedure room and changed into the oh so fashionable paper gown. I jumped up on the frigid steel table and scooched myself into a semi-comfortable position. The doctor came in and was ready to begin.
Now the first thing that put me on edge was the fact that he could not do an x-ray due to another illness so he had to go about his business blindsided. There would be no nifty video on the screen for him to guide his needle up my back - he had to feel it with his fingers and eyes.
He told me to lay down in a fetal position and hold my knees close to my chest. He administered a decent dosage of numbing medication so I would not feel a thing. I was warned I would feel a slight pinch as the spinal tap needle entered my body. Slight was an understatement. Needless to say he gave me more drugs to ease the pain.
OK so it was in, the needle was in and it was slowly penetrating through my spinal cavity up my canal. The point of this procedure was to give a accurate diagnosis, extract fluid for testing, and measure the pressure that was lying around my brain.
We got more than we bargained for. I could feel a wet substance rolling down my back. There was so much extra cerebrospinal fluid, which protects your brain and spinal cord from injury, that it was running out of the small pin hole pricked in my back like a waterfall. The doctor filled four tubes of water that had leaked from my back. After some draining, he hooked up a cylinder-shaped device to the needle. This was to measure my intracranial pressure, which would be a deciding factor in my diagnosis.
Inside of this tube there was a ball. The amount of intracranial pressure inside of my head would blow a small white ball up the tube. The tube was numbered and where the ball stays is the level of pressure inside of your head.
On a normal person the level should range from 8-18, with 18 being somewhat risky. My head nearly blew the ball out of the hole. I came in at a whopping 35. This meant I was almost double the norm. What no wonder I had headaches!
Finally, he was finished and was ready to remove the needle. I thought someone was walking on my back, as the pressure of the needle sliding out caused some uneasiness. The needle was out. I was told not to move. I layed there on the cold slab while he put a bandage over the hole in my lower back.
The four tubes of cerebrospinal fluid were given to my dad and sent directly to the hospital for immediate testing. I was placed in a over sized yellow recliner made from pleather. I was not allowed to move for the next hour. If you move, there is a chance the hole will not close and air will seep in causing an infection.
My dad returned from the hospital and joined me in the recovery area. The doctor then came in to deliver the news. I, in fact, was suffering from pseudo tumor cerebri. This translates into "false brain tumor" due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the space surrounding the brain.
Our next step was to discuss treatment, lifestyle change and recovery. The doctor suggested right away that I be sent for a number of brain scans while he waited for the results of the fluid tests.
I was prescribed Diamox to help with the fluid release and Motrin in the 800mg each capacity. He also suggested I start taking Darvocet for the pain while he looked for a suitable headache treatment.
I went home that day flustered. I wondered how this could have happened and how was I going to fix it. Could I just ignore it? And did I mention I hate medication.
My dad got me together, put me in his truck and drove me to Dr.Rampal's office. Approaching the door I could feel the sweat building in my palms. I was scared shitless!
I went in, announced myself, and waited for my anticipated turn. The door squeaked and it was slightly ajar as a raspy voice called my name. No turning back now.
I went to the procedure room and changed into the oh so fashionable paper gown. I jumped up on the frigid steel table and scooched myself into a semi-comfortable position. The doctor came in and was ready to begin.
Now the first thing that put me on edge was the fact that he could not do an x-ray due to another illness so he had to go about his business blindsided. There would be no nifty video on the screen for him to guide his needle up my back - he had to feel it with his fingers and eyes.
He told me to lay down in a fetal position and hold my knees close to my chest. He administered a decent dosage of numbing medication so I would not feel a thing. I was warned I would feel a slight pinch as the spinal tap needle entered my body. Slight was an understatement. Needless to say he gave me more drugs to ease the pain.
OK so it was in, the needle was in and it was slowly penetrating through my spinal cavity up my canal. The point of this procedure was to give a accurate diagnosis, extract fluid for testing, and measure the pressure that was lying around my brain.
We got more than we bargained for. I could feel a wet substance rolling down my back. There was so much extra cerebrospinal fluid, which protects your brain and spinal cord from injury, that it was running out of the small pin hole pricked in my back like a waterfall. The doctor filled four tubes of water that had leaked from my back. After some draining, he hooked up a cylinder-shaped device to the needle. This was to measure my intracranial pressure, which would be a deciding factor in my diagnosis.
Inside of this tube there was a ball. The amount of intracranial pressure inside of my head would blow a small white ball up the tube. The tube was numbered and where the ball stays is the level of pressure inside of your head.
On a normal person the level should range from 8-18, with 18 being somewhat risky. My head nearly blew the ball out of the hole. I came in at a whopping 35. This meant I was almost double the norm. What no wonder I had headaches!
Finally, he was finished and was ready to remove the needle. I thought someone was walking on my back, as the pressure of the needle sliding out caused some uneasiness. The needle was out. I was told not to move. I layed there on the cold slab while he put a bandage over the hole in my lower back.
The four tubes of cerebrospinal fluid were given to my dad and sent directly to the hospital for immediate testing. I was placed in a over sized yellow recliner made from pleather. I was not allowed to move for the next hour. If you move, there is a chance the hole will not close and air will seep in causing an infection.
My dad returned from the hospital and joined me in the recovery area. The doctor then came in to deliver the news. I, in fact, was suffering from pseudo tumor cerebri. This translates into "false brain tumor" due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the space surrounding the brain.
Our next step was to discuss treatment, lifestyle change and recovery. The doctor suggested right away that I be sent for a number of brain scans while he waited for the results of the fluid tests.
I was prescribed Diamox to help with the fluid release and Motrin in the 800mg each capacity. He also suggested I start taking Darvocet for the pain while he looked for a suitable headache treatment.
I went home that day flustered. I wondered how this could have happened and how was I going to fix it. Could I just ignore it? And did I mention I hate medication.
New doctor New diagnosis
I alerted my family doctor of the results the first neurologist delivered to me. He was pissed to say the least. He did some research and found a different doctor for me to try.That's when I met Dr.Rampal, my saving grace.
Dr.Rampal, a petite yet outspoken Indian man, welcomed me into his office and listened to my health woes. I recited the story to him of what has been happening and he scratched his head and said I think I know what is wrong. He charged toward my face with a tiny flashlight and told me to look straight but direct my eyes toward the corner. He shined the light into the crease of my eyes and made a noise of agreement to himself.
"I believe you have Pseudotumor Cerebri," he said.
I thought what in the hell is that. That doesn't even sound real. Is he playing a cruel joke? He explained to me that this was a term that meant "false brain tumor" that causes a build up of pressure within your cranium which causes headaches, dizziness, vomitting, and even vision loss. But he had yet to tell me the kicker. The only way to properly diagnose PTC is to perform a spinal tap a patient. I have heard of that before and I was instantly scared. The thought of a needle the length of my leg piercing into my back left me a little uneasy.
Dr.Rampal strongly advised me to have the procedure. He informed me it was the only way to be absolute about what was going on in my head and the revealed information would assist him in my treatment. I uttered the words "I'll do it," but trust me I was reluctant. Atleast I knew in 2 weeks I would have some sort of answer and I could possibly be on the road to recovery.
Dr.Rampal, a petite yet outspoken Indian man, welcomed me into his office and listened to my health woes. I recited the story to him of what has been happening and he scratched his head and said I think I know what is wrong. He charged toward my face with a tiny flashlight and told me to look straight but direct my eyes toward the corner. He shined the light into the crease of my eyes and made a noise of agreement to himself.
"I believe you have Pseudotumor Cerebri," he said.
I thought what in the hell is that. That doesn't even sound real. Is he playing a cruel joke? He explained to me that this was a term that meant "false brain tumor" that causes a build up of pressure within your cranium which causes headaches, dizziness, vomitting, and even vision loss. But he had yet to tell me the kicker. The only way to properly diagnose PTC is to perform a spinal tap a patient. I have heard of that before and I was instantly scared. The thought of a needle the length of my leg piercing into my back left me a little uneasy.
Dr.Rampal strongly advised me to have the procedure. He informed me it was the only way to be absolute about what was going on in my head and the revealed information would assist him in my treatment. I uttered the words "I'll do it," but trust me I was reluctant. Atleast I knew in 2 weeks I would have some sort of answer and I could possibly be on the road to recovery.
What is it?
I stayed in the hospital for a few hours where they poked, prodded and badgered my body. I was hooked up to a heart monitor and then sent in for a CAT scan. The results came back positive, meaning my symptoms of earlier in the night were unexplainable as far as the staff was concerned. Now what?
I was sent home and given the directions to consult my doctor in the morning. Gee thanks a lot!
In the morning, I still had some symptoms of the night before. I was unable to walk properly and my speech was still a bit slurred. My aunt drove me to the doctor cause I was not permitted to drive myself. My family doctor immediately recommended I consult with a neurologist.
Luckily, I found a neurologist that was willing to see me within a day's time.
I visited this doctor, who might I add I would never suggest anyone see, and he told me I was stressed out, that I was suffering from vertigo, and ordered me to get an MRI.
Because I suffer from a severe case of claustrophobia, I had to go to a special facility that gives a stand-up MRI. The results were sent over to the doctor who then called me with the news. He told me with a passive attitude that there was nothing wrong with me and it was just a fluke occurrence that night.
Ummm, yeah OK - I live with pounding headaches and then loose all of my faculties and I am fine. That diagnosis left me with a rotting pit in my stomach. I had to find a new doctor. And fast!
I was sent home and given the directions to consult my doctor in the morning. Gee thanks a lot!
In the morning, I still had some symptoms of the night before. I was unable to walk properly and my speech was still a bit slurred. My aunt drove me to the doctor cause I was not permitted to drive myself. My family doctor immediately recommended I consult with a neurologist.
Luckily, I found a neurologist that was willing to see me within a day's time.
I visited this doctor, who might I add I would never suggest anyone see, and he told me I was stressed out, that I was suffering from vertigo, and ordered me to get an MRI.
Because I suffer from a severe case of claustrophobia, I had to go to a special facility that gives a stand-up MRI. The results were sent over to the doctor who then called me with the news. He told me with a passive attitude that there was nothing wrong with me and it was just a fluke occurrence that night.
Ummm, yeah OK - I live with pounding headaches and then loose all of my faculties and I am fine. That diagnosis left me with a rotting pit in my stomach. I had to find a new doctor. And fast!
Monday, March 19, 2007
Hospital Blues
It was August 9, 2005, and I was shopping in the monster of all department stores, Wal-Mart. Now I don't know about some of you, but I find shopping with my mother in Wal-Mart to be a chore - almost comparable to scrubbing a filthy toilet. And of course without fail, this day like any other, my mother wandered away leaving me standing silent in an isle full of bargain hunting idiots.
I immediately felt sweaty and overwhelmed. My head was ringing like an overused bell. I had to get out of there. I was not sure if the atmosphere of the large yet trashy department store was to blame for my out of body experience - or was it possible that the "aliens" were back?
My fit of frenzy launched me on a store wide excursion for my mom. There she was pushing her cart nonchalantly, as I was suffering. I grabbed her attention and let her know it was time to leave. I thought once I was out of the craziness of Wal-Mart I would feel better.
Not the case.
My body sat in the driver seat, turned the key, hands on steering wheel and foot planted down on the pedal began to drive the car away. It was weird. I was aware of my surroundings but could not control my body. It was like I was having a double sided stroke. My mouth could utter no words, my body could muster no energy, all I could do is cry.
After about a quarter of a mile of turtle crawling in the car my mom made me pull over so she could resume the driving duty. (Now I knew it was bad cause my mom doesn't drive because of her own illness.)
She got me to her house and made me stay on the couch. I was able to studder out a few words. I just wanted to go home. She wasn't having it. I swore I was fine - then I fell off the couch!
Before long I was crying in hysterics because the 911 crew was inside my mom's house strapping me to a board. My headaches came to a head, popped like a pimple and landed me in the hospital.
That was the beginning of my battle.
I immediately felt sweaty and overwhelmed. My head was ringing like an overused bell. I had to get out of there. I was not sure if the atmosphere of the large yet trashy department store was to blame for my out of body experience - or was it possible that the "aliens" were back?
My fit of frenzy launched me on a store wide excursion for my mom. There she was pushing her cart nonchalantly, as I was suffering. I grabbed her attention and let her know it was time to leave. I thought once I was out of the craziness of Wal-Mart I would feel better.
Not the case.
My body sat in the driver seat, turned the key, hands on steering wheel and foot planted down on the pedal began to drive the car away. It was weird. I was aware of my surroundings but could not control my body. It was like I was having a double sided stroke. My mouth could utter no words, my body could muster no energy, all I could do is cry.
After about a quarter of a mile of turtle crawling in the car my mom made me pull over so she could resume the driving duty. (Now I knew it was bad cause my mom doesn't drive because of her own illness.)
She got me to her house and made me stay on the couch. I was able to studder out a few words. I just wanted to go home. She wasn't having it. I swore I was fine - then I fell off the couch!
Before long I was crying in hysterics because the 911 crew was inside my mom's house strapping me to a board. My headaches came to a head, popped like a pimple and landed me in the hospital.
That was the beginning of my battle.
Aches and pains
It seems as though people always have some sort of daily ache or pain. And I am here to tell you that I am no different.
I spent the better part of 2005 suffering from daily pounding headaches. I ate Aleve like they were free samples at the local candy shop. They worked for a little while (like one minute of relief per day), but there came a time when OTC drugs could no longer help my head.
The next few months felt like I was swimming in a fish bowl. The headaches were there when I woke up and still hanging out in my head when I would go to bed. I kept telling myself I needed to visit a doctor, however my bullheaded attitude kept me away from the physician.
Finally, almost a year had passed and my headaches were like my fashion. It was the same as wearing shoes, I always wore a headache. But now they had turned from just a nagging pain to an entire body crippling emotion. It was apparent my body had been invaded. I didn't think it was aliens but it sure did feel strange.
My days were spent feeling dizzy and glaring through blurry eyes. I kept it all to myself until that fateful August night.
I spent the better part of 2005 suffering from daily pounding headaches. I ate Aleve like they were free samples at the local candy shop. They worked for a little while (like one minute of relief per day), but there came a time when OTC drugs could no longer help my head.
The next few months felt like I was swimming in a fish bowl. The headaches were there when I woke up and still hanging out in my head when I would go to bed. I kept telling myself I needed to visit a doctor, however my bullheaded attitude kept me away from the physician.
Finally, almost a year had passed and my headaches were like my fashion. It was the same as wearing shoes, I always wore a headache. But now they had turned from just a nagging pain to an entire body crippling emotion. It was apparent my body had been invaded. I didn't think it was aliens but it sure did feel strange.
My days were spent feeling dizzy and glaring through blurry eyes. I kept it all to myself until that fateful August night.
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