To Whom it May Concern:
My name is Mary Stockton-Kubishta
and I am trying very hard to get my story out in the public. My
story is not unique unfortunately there are many like me and we
are being shunned and told that there is nothing wrong with us.
Its like we are the red headed step child of the gastric bypass
community. There are many stories like mine, but I refuse to lay
down and die. I refuse to let people continue to get this
surgery without all the facts. So here is my story:
It
was February 8th 2008 I was beyond excited to begin my new life,
with my husband by my side I was wheeled into the operating
room. While I was under anesthesia I dreamed about how wonderful
life was going to be, about how I was going to be able to be
normal for once in my life. How I would no longer be the "FAT"
girl. When I woke up I was in a lot of pain and very out of it,
however I was still very excited to begin my journey and new
life. Before the surgery I did not just jump into the pool of
gastric bypass, I did much research about side effects and about
how my life would change. How I would have to take many vitamins
and drink protein drinks and make sure I got enough nutrition to
maintain a healthy life. I went to a six month nutrition class
to see if I could lose weight the old fashion way by dieting and
exercising. I talked with a counselor to make sure I was making
the right decision for the right reasons. I even under went a
mental evaluation to make sure I was of sound and mind and able
to handle the changes my body was going to make. I was very
prepared for everything (so I thought).
After
approximately ten months to a year I had passed all the tests
and jumped through all the hoops and was able to have the
surgery. My husband was very supportive and excited for me. When
I was released from the hospital all was great, I was a model
patient no problems with anything, I was able to return to work
after approximately 3 weeks. So lets fast forward to May 8th
2008, I got to work around 12:00pm was talking with my co-worker
about that days events so he could go home. But all of a sudden
I told him something was wrong, I didn't know what it was so I
asked him to wait before he left, I didn't want to be alone I
could tell something was wrong. I felt very light headed, I
smelled pine sole, and I had this very strong déjà vu feeling.
The next thing I knew I woke up in the ER (good thing I worked
in a hospital). I was very scared and didn't know what was going
on. They kept telling me I had a seizure and hit my head, that I
was going to be okay. I wanted to know where my husband was, he
was my rock and I needed him. They said that my co-worker had
called him, but I needed to talk to him myself. I grabbed my
cell phone to call him but I couldn't remember his cell number,
I tried to use my phone book in my cell but I could not work my
cell phone. I started screaming and yelling, something was
really wrong, how could I not know my husbands number.
The ER ran many tests and did a MRI and found nothing, I was
perfectly healthy according to all the test they ran. They sent
me home and I was put on a medical leave of absence from work. I
went to a neurologist and he ran another MRI and a EEG he put me
on Keppra a anti-seizure medication. After all the results came
back he said everything was normal, it must have been a fluke
accident and he sent me back to work. I kept seeing my primary
doctor because I began having major headaches. I could not get
them to go away. Going to work was very hard now because I lost
my license do to the seizure. I had to be seizure free for six
months before I could get it back. I went to my gastric bypass
doctor and he shrugged it off and said it had nothing to do with
my surgery, he then said everything was great and sent me on my
way.
After being back at work for about a month things
started to go down hill, I had migraines that wouldn't go away,
I had muscle spasms that prevented me from doing my job
accurately. I went to my primary doctor and he said that I
needed to go back on a medical leave of absence until we figure
out what was wrong. I was scared because my job was a big chunk
of our income, and it supplied our insurance, not working meant
no insurance. But, my husband said don't worry we will get
through it. A week after leaving my job I had yet another
seizure, however it was worse than the first one. I feel in my
garage cut my head open and was laying in a pool of my own
blood. My mom called a ambulance and they took me to the
hospital. Yet again tons of test that revealed nothing. I went
back to my neurologist and he put me on another med called
tegretal. Then he discussed the possibility of my seizures being
connected to my gastric bypass. I was in shock that idea had
never even crossed my mind. I went home that night made a
appointment with my gastro doctor and started doing my research
on the web.
Much to my surprise I found many people that
had the same issue that I was having. They had the gastric
bypass and all of a sudden out of the blue started having
seizures. I was in disbelief, how could this be happening to so
many people but not be listed as a possible side effect. Why was
I not aware of this before the surgery? I was at a loss and
couldn't wait to talk to my gastro doctor to find out what the
hell was going on. I was beyond pissed that my new life was
destroyed. When I got to the gastro doctors office with my
husband we started asking him many questions about seizures and
gastric bypass. My doctor looked white as a ghost and told me
and my husband to LEAVE and NEVER come back. I was in a state of
disbelief, what did I do wrong why was he refusing to see me
ever again? I got up and left his office quietly and my husband
and I talked the whole way home. We decided we where not going
to give up with out a fight, but how do we fight when we have no
proof. I started by doing research and talking to as many
doctors and nurses as I could. However, without insurance it was
very hard to get tests done.
On September 25th 2008 I
had another seizure, at this point we where trying to rule out
low blood sugar as the cause and my husband checked my sugar
levels during the seizure, it was 88. There for it had nothing
to do with hypoglycemia. When I woke up I had my children all
around me crying and the paramedics asking me tons of questions
that I could not answer. They took me to the hospital once again
and they ran tests again and once again found nothing.
I
tried everything to get insurance but I couldn't because we made
to much money in the states eyes to get insurance. So I just
dealt with life as it was handed to me. I had nothing else to
loose so I took to the internet and made a video on u-tube. And
much to my surprise I got a lot of people responding to my
video. I even got in contact with a lady that worked with BBC,
she wanted to do a documentary about my story for BBC. I thought
I was finally going to get the word out and make sure people
know what they are getting into. I needed to make sure people
understand what it means to your life if you have a seizure
disorder. I had yet another seizure on November 17th 2008, I was
beginning to get furious. I decided against medical advise to
stop taking my anti-seizure meds. At first it was really hard
because the muscle spasms only got worse. I also started
experiencing a loss of feeling in my right leg near my foot. I
went to my primary doctor and he said I needed to see a
neurologist as soon as possible, but I didn't have insurance and
could barley afford to pay to see him.
Around Christmas
time I lost it. I was wrapping a gift for my oldest son, it was
a Nintendo DS game, and right on it in big letters it said
"WARNING MAY CAUSE SEIZURES" how can a game warn you about
possible seizures but a major surgery can't. I was still off my
meds and doing as well as I could, I was still trying to get my
story out and the BBC thing wasn't as big as I thought. It only
played in England, not in the US. So lets spring forward to the
next seizure February 24th 2009, I was told I had to go back on
my seizure meds and was still on my pain meds for headaches due
to the head trauma I seemed to have approximately every two
months. I needed insurance because I was now having problems
eating and I looked like death warmed over.
I left for
Oregon with my youngest son and got insurance through the state
there, because I had no income and I didn't live with my husband
so I didn't have to count my husbands. I started seeing doctors
again and trying to get help. They ran the same tests that they
had here in California and got the same results no cause for
seizures. They found the problem for me not being able to eat
and fixed it right away. I continued doing everything the
doctors asked, but never got a solution. I had my 8th seizure on
June 3rd 2009, I didn't go to the hospital this time because it
was a waist of time and tax payers money. I was ready to give up
what was I fighting for? Nobody could find anything wrong, I was
perfectly healthy (except for the fact that I was loosing weight
faster than I could take a bath, and I was having seizures like
ever other month, had muscle spasms that would not go away, loss
of feeling in my right leg, and oh yeah chronic headaches). I
left Oregon and came back home to California because I needed my
husband and my children, my mom came with me to baby sit me and
help take me to doctors appointments.
On July 31st 2009
I had what my husband and I like to call a episode because it
wasn't a real seizure. I sat on the edge of my bed unresponsive
chewing on my tongue and rocking back and forth when I came out
of it about ten minutes later I had lost about six months worth
of memories. I was so scared I didn't understand what was going
on and everything my husband was telling me made no since to me.
He told me I was helping my sister move to Oregon and I flipped
out. I had no idea what he was talking about, he took me to the
ER and they ran tests and everything came back normal (of
course). After about three hours the memories came back. I still
suffer from short term memory loss to this day. I have to write
lists so I don't forget what I need to do that day.
I
finally got insurance through the state of California and found
a doctor that seemed to be the answer I was looking for. When I
told him my story he was so excited, he said I was the reason he
went to medical school and became a doctor. He loved the
unsolved mystery of health problems and was going to get down to
the answer. He said he was positive that it was connected some
how to my gastric bypass.
I continued to have seizure
after seizure, September 3rd 2009, October 6th 2009, November
21st 2009, then it changed. My doctor lost all faith in me, all
because I was putting up Christmas decorations and spilled a box
if ½ inch no head nails, and apparently some of them got into my
cup of soda. I was drinking my drink and felt something in my
throat, I ran to my husband choking and trying to get them to
come up. My husband smacked me on the back unfortunately the
didn't come up the went down. I went to the ER immediately
because I knew I had swallowed something but didn't know what.
Then they told me I had swallowed two nails, and that because
they were so far down in my digestive tract it looked as if I
had swallowed them a while ago. I tried to explain that I had a
gastric bypass and I digest things a lot faster than the normal
person. I didn't have to have surgery or anything I just had to
stay in the hospital until I passed the nails. I did have a
psychologist come and talk to me to make sure I had not
swallowed them on purpose ( yum nails lol). She concluded that I
was of perfect sound and mind and that it was a accident,
however my doctor was not as sure. He lost all faith in me and
started to accuse me of having Munchausen's disease, he started
to say that I swallowed the nails on purpose and that I was
faking the seizures. So I did everything I could to prove to him
I wasn't. I told him I would yet again get a mental evaluation,
and my husband recorded one of my seizures. He refused to send
me to a psychologist and refused to watch the video.
I
started having seizures every month. Around the same time of
month, January 25th 2010, February 24th 2010, March 23rd 2010,
April 21st 2010, and the last one May 22nd 2010.
My life
has changed due to this surgery, but not for the better. I went
from a healthy 334lbs woman to a very unhealthy 165 lbs woman. I
lost my job, my drivers license, my ability to be alone, almost
everything. People need to know that this is a possible side
effect of the gastric bypass and what having a seizure will mean
to there life. It isn't just a seizure o'well, it is life
changing. My dream of not being the "FAT" girl has been
realized, however I am now the "SEIZURE" girl. Please help me
get this information out there. People deserve to know all the
information before they embark on this life changing surgery.
This surgery is gaining everyday in popularity and these people
don't have all the facts. Help me give them the facts that I
know are being withheld.
I know this is a long post but I
need people to e-mail me if they have experienced unexplained
seizures after their gastric bypass. One voice is loud but many
voices are HEARD!!!!!!!!!!!!!!!
Thanks for listening
marykubishta@yahoo.com