It's been a few days but honestly, I don't have much to say. Right now I am just waiting on the insurance company to approve me so I can go ahead and schedule my surgery.
I have already been through the whole freaking out because its brain surgery stage, and now I am just at the "lets get this over with so I can have a normal life" phase!
Am I scared?
YES
I just want my life back. I want to be able to do the things with my children that mothers are suppose to do!
I want to take care of everyone!
......some days its so hard!
Thursday, September 9, 2010
Sunday, August 29, 2010
Bday Party Day
Today was my nephews first bday party.. Normally I LOVE parties, but yesterday I woke up with a MASSIVE head cold.. anyone with chiari will tell you head colds are no fun! Every cough and every sneeze brings on a tremendous amount of pressure in your head, and in my case it is followed with a headache! It was hot and humid (the party was at a park) and my youngest son wasn't feeling well. He had a virus last week and the heat made his rash worse, but other than that it was a really good time.. I couldn't eat that much, having a head cold leaves me with no appetite :(
But it was fun and my cute sweet nephew enjoyed his homemade Elmo cake. His face was completely red from the icing!
I did get to see a lot of family today that I only see once or twice a year.. We were talking to my aunt who had suffered from a brain aneurysm about 12 years ago.. She was talking about going to see a new neurologist this week.. So my mom started to tell everyone about my situatuon... And of course no one knew what I was talking about, not even my uncle's new girlfriend who has been a nurse for years... again, not surprised, but was happy to spread the word and inform them!
But it was fun and my cute sweet nephew enjoyed his homemade Elmo cake. His face was completely red from the icing!
I did get to see a lot of family today that I only see once or twice a year.. We were talking to my aunt who had suffered from a brain aneurysm about 12 years ago.. She was talking about going to see a new neurologist this week.. So my mom started to tell everyone about my situatuon... And of course no one knew what I was talking about, not even my uncle's new girlfriend who has been a nurse for years... again, not surprised, but was happy to spread the word and inform them!
Saturday, August 28, 2010
So the nerves return
So , In doing some more research (which I really should stop doing) I come across this article about Sally Meehan. She is a mother to a 2yo and a 6 month old.. She was having excrutiating headaches during pregnancy, and her dr's basically misdiagnosed it. After giving birth they sent her for an MRI and found she had chiari.. She went in for the decompression surgery and died 3 days later of heart failure..
The Dr's at the hospital said it was the only case they have seen and expected they probably wouldn't see anymore.. This poor woman, her husband, kids, and family now have to suffer from what I believe is just poor knowledge of this condition..
I can say this had made me, yet again nervous about having the surgery! :(
The Dr's at the hospital said it was the only case they have seen and expected they probably wouldn't see anymore.. This poor woman, her husband, kids, and family now have to suffer from what I believe is just poor knowledge of this condition..
I can say this had made me, yet again nervous about having the surgery! :(
Friday, August 27, 2010
My life with Chiari
Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.
The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.
A syrinx is a fluid-filled cavity within the spinal cord (syringomyelia) or brain stem (syringobulbia). Predisposing factors include craniocervical junction abnormalities, spinal cord trauma, and spinal cord tumors. Symptoms include flaccid weakness of the hands and arms and deficits in pain and temperature sensation in a capelike distribution over the back and neck; light touch and position and vibration sensation are not affected. Diagnosis is by MRI. Treatment includes correction of the cause and surgical procedures to drain the syrinx or otherwise open CSF flow
I was about 21 or 22 years old. That's when my symptoms started. I was having all sorts of medical problems.. I started having dizziness, trouble swallowing and tingling in my hands and my feet.. After 3 or so visits to my pcp she finally sent me for an MRI. Having a history of brain aneurysm in the family (my grandmother died in her early 50's and my aunt had one in her 30's) I was worried! So I went for the MRI and what a terrible experience that was! You don't know that you are claustrophobic until you have one of those.. But I made it through it.
Then comes the longest wait of my life..................
2 days later I get a phone call from the Dr saying no aneurysm but I do have an Arnold Chiari Malformation...a congenital brain defect..... WAIT......... a brain defect???? WHAT????
She reassured me that this causes no symptoms and no problems but gave me a referral to a neurosurgeon to ease my mind....
A few days later I was in the neurosurgeons office! I wasn't messing around with no brain issues!
I still remember to this day everything about that appointment, which is funny because if you know me you know me, you know how bad my memory is! Lets just call him Dr Z. Dr Z looked at my scans and proceeded to tell me, and I quote, " As you get older your brain shrinks.. This will correct itself on its own and causes no problems. Buy some New Balances and stay off of ladders". He asked me some very personal questions and compared my brain and spinal fluid flow to that of an ejaculating penis.. Needless to say, I never went back to him!! That was approximately 8 years ago.
Fast forward a few years....
I was living in PA with my ex-husband and 2 kids. I was still having dizzy spells all the time..Although I felt like crap one night I decided to take a ride down to Baltimore to visit with some friends I had not seen in a while.. I was out having a great time and out of no where BAM ! I am on the floor.. I passed out.. The first thing my friends expected was that I was starving myself. ( I had recently lost about 80lbs on weight watchers... And NO, I wasn't starving myself.. Are they crazy?? I love food too much to starve myself!!!)
I ended up in one of the worst hospitals in Baltimore, and ended up checking myself out after 14 hours of them finding nothing.. I went back to PA and all was fine.....for awhile that is..
Fast forward 2 more years.....
My husband at the time and I had bought a house back in Baltimore.. Work was good kids were good...Me, not so good. I was still having bad dizzy spells all of the time...I honestly thought at this point I was bringing this all on myself and having panic attacks. I truly believed it was all in my head... Little did I know at the time, it was in my head, literally..
My husband and I ended up going through a separation, and eventually a divorce... I ended up reconnecting with an old bf from high school that was also going through a divorce. We became close and were hanging out a lot.... Thank god.. because one day it happened again.. I passed out! I thank god everyday for him being around again. We were close neighbors and he had a key to my place... That day while I was at work, I wasn't feeling so well. So I decided to take myself to the hospital. I didn't have my insurance cards so I had to stop by my place and get them. And somewhere in there ( I don't remember this but I was talking to a friend and I told him to call my bf, that I wasn't feeling good. ) he came to my apt and found me on the floor with a big lump on my head. When I passed out I hit the nightstand..
So again at the hospital.. When they checked me in they asked if I had any medical conditions and of course I say "YES. I have a chiari malformation" ...."OHHHH, you do?...... what is that??"
All I can do is laugh. I don't think this condition is as rare as people think!
Once again they find nothing.. At this point, I feel some people think I am starving myself or making it up!
I go on for a while with the same symptoms. I never really thought about chiari much unless my boss wanted me to get on a ladder at work for something, the I would proceed to tell him I have a brain defect. I can't! I would make jokes about it and just say my brain is too big for my head..
Now to 2009.. In October of 2009 I became pregnant with twins.. I was taken out of work at 17 weeks due to some complications I had with my first 2 pregnancies.. I was a store manager for a well known video game store at the time, who decided to fire me because I needed too many weeks off (related to pregnancy) in June of 2009 I had my twins, 4 weeks early. I told the anesthesiologist about my chiari and she took extra precautions.. With my first pregnancy I had a severe drop in blood pressure with the epidural and my second daughter I had some kind of air pocket that resulted in terrible headaches from the epidural.. This time no headaches no blood pressure drop.
I thought all was well, I was still having the dizziness but one day it all became worse.. The dizziness was terrible, and all day everyday where as before it was only a few times a week... I became so paranoid to drive that I would make up an excuse everyday for my mother to drive 20 minutes to pick my kids up from school.. It got to the point I wouldn't go anywhere alone for fear of passing out!
Then I began to have these excruciating headaches and these"zapping"pains in my head. My hands and feet started going numb very easy and I have been getting NO sleep. Everyone kept saying I was tired I have 5 kids, or why are you like this all of the time? I think some even thought I was just plain lazy. I am a stay at home mom and couldn't even get any house work done because I was too exhausted all of the time.. In fear of the whole aneurysm thing again, I make an appt with my Dr and she schedules me for an MRI again...
I get a phone call from the Dr's secretary, not the Dr stating my Dr wants me to see a neurosurgeon again.. I still have the chiari and a syrinx, which the secretary didn't know what it was or how to say it. She had to spell it for me... Then she said, "lets give dr z a call and make an appt" I told her no way. Give me another neurosurgeon. So I got an appt with Dr A.. My appt was for Friday the 13th.. Luckily head ended up in emergency surgery and saw me Saturday instead.. I went to his office and he did his little neurological tests and took me in the office and basically all he said was you need surgery... Did I mention how shaky his hands were? He tried to show me this brain he had the plastic ones that each piece comes apart.. Well he dropped it on the floor... I don't know if that was a sign or not...lol.. When I asked him how many of these he has done, he said a few.. He was old and had been practicing for years, so to me a few is not good enough....
I came home that day knowing that this was not the guy that was going to be cutting into my head... The procedure called posterior fossa decompression, involves removing the part of your skull around the cerebral tonsils to make room and cutting open your dura (basically the lining around your brain) Then they put either a synthetic material or harvest your own skin and use it as a dura patch.. This is suppose to let your cerebral spinal fluid flow easier to the brain. So no, this guy was not getting a scalpel anywhere near my head!
And so I go on my search... I look on-line to find anything and everything about chiari and syringomyelia (syringomyelia is the term for the condition of having a syrinx). I spent days and hours looking at websites, reading surgery stories, more bad than good,looking for any info and trying to find a great Dr that can help me.. I realize I NEED the surgery. I have an 11mm herniation and a syrinx. The surgery for the chiari is suppose to open up the flow of spinal fluid and shrink the syrinx.. If not, the syrinx could get bigger and lead to nerve damage and possibly paralysis...
I have a friend that works at Johns Hopkins and put the word out for me.. She works in Labor and Delivery. 2 days later the dept head for neurosurgery was calling me to come in.. 2 days later I was seeing the good Dr.! Johns Hopkins is scary. Its such a big place and one of the best hospitals in the world. It almost feels like you are there because there is something REALLY wrong with you.. It took about 20minutes to walk through the hospital and get to his office.. We sat there for a good half hour ( I was early).. This Dr had so many awards and recognitions everywhere, nice huge office, and a few books that he published sitting on the table. He finally came in. He was a lot taller than I expected. He looked at my scans and then he did his neurological test which was far more extensive than any other neurosurgeon that I had seen. Then he showed me my scans and started talking about syringomyelia, the chari and the surgery..he took his time and explained everything.... mind you I already knew everything he said because all I have been doing is researching this..But I figured I could use that as a good judgement of how knowledgeable he was of this.. Believe it or not MOST neurosurgeons don't know much about this at ALL! He explained all the tests they do before hand .........and then......... the complications.... bleeding during surgery, death, meningitis, cerebral spinal fluid leak, etc etc...... and fear sets in again... THEN he drops the bomb that he wouldn't be doing the surgery and called the Dr in that would. I excused myself to use the restroom (I all of the sudden wasn't feeling so good) and when I came back Dr. M was there she was young, she looked about my age! And he told her what was going on and she acted like it was a piece of cake! I wasn't sure if that was a good thing or a bad thing! She gave me her e-mail and they told me to get in touch if I wanted to have the surgery there but even if I didn't they recommended surgery..
So here I am, waiting for my new insurance to start so I can get my life back to normal... I have been e-mailing back and forth with Dr M and she has answered every one of my questions.. she trained at a hospital under 2 Chiari specialists and had performed 40 or so surgeries. I have researched her and have only found good things! Dr G said that although he would not be doing the surgery he would be there the whole time to over see it...
So I am still deciding, I know I need the surgery I just have to wait for the insurance!!
Did I mention that the first neurosurgeon never informed me about the syrinx and complications of it? ( It was there 8 years ago)!!
That's my story.............so far!
The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.
A syrinx is a fluid-filled cavity within the spinal cord (syringomyelia) or brain stem (syringobulbia). Predisposing factors include craniocervical junction abnormalities, spinal cord trauma, and spinal cord tumors. Symptoms include flaccid weakness of the hands and arms and deficits in pain and temperature sensation in a capelike distribution over the back and neck; light touch and position and vibration sensation are not affected. Diagnosis is by MRI. Treatment includes correction of the cause and surgical procedures to drain the syrinx or otherwise open CSF flow
I was about 21 or 22 years old. That's when my symptoms started. I was having all sorts of medical problems.. I started having dizziness, trouble swallowing and tingling in my hands and my feet.. After 3 or so visits to my pcp she finally sent me for an MRI. Having a history of brain aneurysm in the family (my grandmother died in her early 50's and my aunt had one in her 30's) I was worried! So I went for the MRI and what a terrible experience that was! You don't know that you are claustrophobic until you have one of those.. But I made it through it.
Then comes the longest wait of my life..................
2 days later I get a phone call from the Dr saying no aneurysm but I do have an Arnold Chiari Malformation...a congenital brain defect..... WAIT......... a brain defect???? WHAT????
She reassured me that this causes no symptoms and no problems but gave me a referral to a neurosurgeon to ease my mind....
A few days later I was in the neurosurgeons office! I wasn't messing around with no brain issues!
I still remember to this day everything about that appointment, which is funny because if you know me you know me, you know how bad my memory is! Lets just call him Dr Z. Dr Z looked at my scans and proceeded to tell me, and I quote, " As you get older your brain shrinks.. This will correct itself on its own and causes no problems. Buy some New Balances and stay off of ladders". He asked me some very personal questions and compared my brain and spinal fluid flow to that of an ejaculating penis.. Needless to say, I never went back to him!! That was approximately 8 years ago.
Fast forward a few years....
I was living in PA with my ex-husband and 2 kids. I was still having dizzy spells all the time..Although I felt like crap one night I decided to take a ride down to Baltimore to visit with some friends I had not seen in a while.. I was out having a great time and out of no where BAM ! I am on the floor.. I passed out.. The first thing my friends expected was that I was starving myself. ( I had recently lost about 80lbs on weight watchers... And NO, I wasn't starving myself.. Are they crazy?? I love food too much to starve myself!!!)
I ended up in one of the worst hospitals in Baltimore, and ended up checking myself out after 14 hours of them finding nothing.. I went back to PA and all was fine.....for awhile that is..
Fast forward 2 more years.....
My husband at the time and I had bought a house back in Baltimore.. Work was good kids were good...Me, not so good. I was still having bad dizzy spells all of the time...I honestly thought at this point I was bringing this all on myself and having panic attacks. I truly believed it was all in my head... Little did I know at the time, it was in my head, literally..
My husband and I ended up going through a separation, and eventually a divorce... I ended up reconnecting with an old bf from high school that was also going through a divorce. We became close and were hanging out a lot.... Thank god.. because one day it happened again.. I passed out! I thank god everyday for him being around again. We were close neighbors and he had a key to my place... That day while I was at work, I wasn't feeling so well. So I decided to take myself to the hospital. I didn't have my insurance cards so I had to stop by my place and get them. And somewhere in there ( I don't remember this but I was talking to a friend and I told him to call my bf, that I wasn't feeling good. ) he came to my apt and found me on the floor with a big lump on my head. When I passed out I hit the nightstand..
So again at the hospital.. When they checked me in they asked if I had any medical conditions and of course I say "YES. I have a chiari malformation" ...."OHHHH, you do?...... what is that??"
All I can do is laugh. I don't think this condition is as rare as people think!
Once again they find nothing.. At this point, I feel some people think I am starving myself or making it up!
I go on for a while with the same symptoms. I never really thought about chiari much unless my boss wanted me to get on a ladder at work for something, the I would proceed to tell him I have a brain defect. I can't! I would make jokes about it and just say my brain is too big for my head..
Now to 2009.. In October of 2009 I became pregnant with twins.. I was taken out of work at 17 weeks due to some complications I had with my first 2 pregnancies.. I was a store manager for a well known video game store at the time, who decided to fire me because I needed too many weeks off (related to pregnancy) in June of 2009 I had my twins, 4 weeks early. I told the anesthesiologist about my chiari and she took extra precautions.. With my first pregnancy I had a severe drop in blood pressure with the epidural and my second daughter I had some kind of air pocket that resulted in terrible headaches from the epidural.. This time no headaches no blood pressure drop.
I thought all was well, I was still having the dizziness but one day it all became worse.. The dizziness was terrible, and all day everyday where as before it was only a few times a week... I became so paranoid to drive that I would make up an excuse everyday for my mother to drive 20 minutes to pick my kids up from school.. It got to the point I wouldn't go anywhere alone for fear of passing out!
Then I began to have these excruciating headaches and these"zapping"pains in my head. My hands and feet started going numb very easy and I have been getting NO sleep. Everyone kept saying I was tired I have 5 kids, or why are you like this all of the time? I think some even thought I was just plain lazy. I am a stay at home mom and couldn't even get any house work done because I was too exhausted all of the time.. In fear of the whole aneurysm thing again, I make an appt with my Dr and she schedules me for an MRI again...
I get a phone call from the Dr's secretary, not the Dr stating my Dr wants me to see a neurosurgeon again.. I still have the chiari and a syrinx, which the secretary didn't know what it was or how to say it. She had to spell it for me... Then she said, "lets give dr z a call and make an appt" I told her no way. Give me another neurosurgeon. So I got an appt with Dr A.. My appt was for Friday the 13th.. Luckily head ended up in emergency surgery and saw me Saturday instead.. I went to his office and he did his little neurological tests and took me in the office and basically all he said was you need surgery... Did I mention how shaky his hands were? He tried to show me this brain he had the plastic ones that each piece comes apart.. Well he dropped it on the floor... I don't know if that was a sign or not...lol.. When I asked him how many of these he has done, he said a few.. He was old and had been practicing for years, so to me a few is not good enough....
I came home that day knowing that this was not the guy that was going to be cutting into my head... The procedure called posterior fossa decompression, involves removing the part of your skull around the cerebral tonsils to make room and cutting open your dura (basically the lining around your brain) Then they put either a synthetic material or harvest your own skin and use it as a dura patch.. This is suppose to let your cerebral spinal fluid flow easier to the brain. So no, this guy was not getting a scalpel anywhere near my head!
And so I go on my search... I look on-line to find anything and everything about chiari and syringomyelia (syringomyelia is the term for the condition of having a syrinx). I spent days and hours looking at websites, reading surgery stories, more bad than good,looking for any info and trying to find a great Dr that can help me.. I realize I NEED the surgery. I have an 11mm herniation and a syrinx. The surgery for the chiari is suppose to open up the flow of spinal fluid and shrink the syrinx.. If not, the syrinx could get bigger and lead to nerve damage and possibly paralysis...
I have a friend that works at Johns Hopkins and put the word out for me.. She works in Labor and Delivery. 2 days later the dept head for neurosurgery was calling me to come in.. 2 days later I was seeing the good Dr.! Johns Hopkins is scary. Its such a big place and one of the best hospitals in the world. It almost feels like you are there because there is something REALLY wrong with you.. It took about 20minutes to walk through the hospital and get to his office.. We sat there for a good half hour ( I was early).. This Dr had so many awards and recognitions everywhere, nice huge office, and a few books that he published sitting on the table. He finally came in. He was a lot taller than I expected. He looked at my scans and then he did his neurological test which was far more extensive than any other neurosurgeon that I had seen. Then he showed me my scans and started talking about syringomyelia, the chari and the surgery..he took his time and explained everything.... mind you I already knew everything he said because all I have been doing is researching this..But I figured I could use that as a good judgement of how knowledgeable he was of this.. Believe it or not MOST neurosurgeons don't know much about this at ALL! He explained all the tests they do before hand .........and then......... the complications.... bleeding during surgery, death, meningitis, cerebral spinal fluid leak, etc etc...... and fear sets in again... THEN he drops the bomb that he wouldn't be doing the surgery and called the Dr in that would. I excused myself to use the restroom (I all of the sudden wasn't feeling so good) and when I came back Dr. M was there she was young, she looked about my age! And he told her what was going on and she acted like it was a piece of cake! I wasn't sure if that was a good thing or a bad thing! She gave me her e-mail and they told me to get in touch if I wanted to have the surgery there but even if I didn't they recommended surgery..
So here I am, waiting for my new insurance to start so I can get my life back to normal... I have been e-mailing back and forth with Dr M and she has answered every one of my questions.. she trained at a hospital under 2 Chiari specialists and had performed 40 or so surgeries. I have researched her and have only found good things! Dr G said that although he would not be doing the surgery he would be there the whole time to over see it...
So I am still deciding, I know I need the surgery I just have to wait for the insurance!!
Did I mention that the first neurosurgeon never informed me about the syrinx and complications of it? ( It was there 8 years ago)!!
That's my story.............so far!
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