Song Playing is Gloria Gaynor's
I WILL SURVIVE
If you click the little x on the advertisements on the right, it stops the music. Don't you dare!
I AM A SURVIVOR
I Survived My Genetics
I Survived Brain Surgery
Member Aneurysm & AVM Survivors Group, Thank you, Dr. Maples!
Founder and Member of Tracy Hill Cerebral Support System
See My SURVIVOR Pictures Below
I have written this story to help others. I love you and I care.
This is not just "my
story".
This is the story of each and every one of us who have survived brain surgery.
We are very fortunate to be alive.
We thank our Father for the wonderful
surgeons, nurses, hospitals, clergy,
and our families who have stood by us every step
of the way!
And please forgive all the mistakes on this
page. I am working on them!
Hi, my name is Linda and I AM A SURVIVOR. I survived my GENETICS. I want to thank God,
Dr. Brian O'Grady, South Austin Hospital, my family, and everyone who
helped me SURVIVE. I want to thank Pat for helping me twenty-three years ago to reunite with Melea.
Melea was able to have the MRI
and we know she does not have an aneuryms and she knows to keep watch during the future.
One way I know to show my progress is thru pictures.
Please meet my husband Tommy. This picture was taken March 2007.
I am showing pictures of myself so you can see with your own eyes the progress that I have made. The pictures
where I have very short white hair are the ones following surgery. The ones where I have that Miss Clairol look,
are more recent! The next picture was taken a in February 2007. My husband snapped me on my way to church.
And this picture was taken in early 2006 or late 2005. At the end of this article is a picture of the incision
three weeks after surgery. It may be upsetting to some, so please beware.
Most all of us in our Survivor Group,
survived when the odds were against us. We fought a hard fight and
here we are today learning to live again. The most difficult thing I have ever accomplished was living
after brain surgery. There were several times when I believe I made a choice. I chose to live and I fought to do so.
When we were diagnosed with AVM or
aneurysm, we were told
that our lives were in jeopardy. Many of us were told that without surgery, we could just drop
dead, anytime, or any place. When we chose surgery, we did so not knowing
if we would wake up. With God's help, the expertise of excellent neurosurgeons, the love and care from our families,
and this wonderful support group, we are alive.
We are so very thankful to be
alive today. To the very much loved ones of our group that are not with
us today, please know that they will always be survivors because they will live in our hearts forever.
One of my earliest fears regarded the safety of my children and grandchildren. I knew I had no choice. I had
to have surgery because I did not want to drop dead in front of my grandchildren, or hurt anyone with the shock of
seeing anyone just suddenly die. The other fear was that my children or grandchildren could also be affected by
the same condition. Aneurysms are genetic. Since my recovery, I have interviewed many in my family. I have
researched death certificates. I believe there have been at least five members of my family who have died due to
aneurysms. It was always thought my grandmother died of a stroke. When I sent for her death certificate, I
was amazed to read the diagnosis did not rule out the cause of death being a brain aneurysm. My doctor said all my
children should have MRIs to check for their own safety.
I was in Critical
Care for four or five days. It was weeks before I really began to understand the world once again. I was so fortunate to have
one of the world's best neurosurgeons, Dr. Brian O'Grady, as my doctor. I am
not just
saying that because he did so much for me, but because his expertise is
well documented. I
know that I am alive today because Dr. O'Grady is trusted by GOD to
preserve life. I was fortunate also for being a patient at
South Austin Hospital. This hospital is recognized as being one of the nation's top 100
hospitals. You can view their website at South Austin Hospital.
I hope there is never need of a brain surgeon in your
lives, but if you ever have the need, and if it is possible, see Dr. O'Grady.
I have been epileptic since I was five years old. I have complex partial seizures
and this is another genetic mishap in my family. Dr. Edmond does extensive testing, locating
the part of the brain that is affected. He then prescribes the best treatment
to control the seizures. He is one of the busiest doctors in Austin, but he never seems to
busy to talk to you. Sometimes, I would be so confused, but he could always understand, and help me.
I had been epileptic for more than fifty years and he did something that no had ever tried. He
taught me responsibility. He taught me how to help myself.
Dr. Edmond insists that his patients keeps journals.
I hated this, but I have learned to do it. He has taught me the importance
of learning seizure triggers, how those triggers must be avoided, and how
to handle the situation if a seizure occurs. During all the years prior to surgery, I
did not control seizures. I felt that was the doctor's job, not mine. Life is so much better
since I have learned to be responsbile.
I now am a patient at the VA Medical Center in Austin, Texas. I am so fortunate to have such wonderful care.
Dr. Joe Spann is my primary doctor and I truly believe he is the best primary doctor I have ever had. Dr. James
Little is well known thru out the epilepsy coummunity to be the best at controlling epilepsy. He keeps a close eye
on all my brain, so I am in such good care. I am so fortunate to be a Veteran of the United States Army.
One of the biggest problems involving my surgery was
that I had lived a life of seizure neglect. If you are epileptic and are going to
have brain surgery, be sure that you tell your surgeon, and be sure you are taking
your medicine as directed and are avoiding seizures. A week after surgery,
I began seizuring and seizured about 42 times until it was stopped. I believe this is called
status epilepticus. My Aunt Gladys died in Brackenridge Hospital in Austin, Texas, in the same manner. She seizured
to death. The day I was seizuring, I thought, "I am going to die like Aunt Gladys did." I was not afraid,
I was reconciled.
After each
seizure, I would be completely paralyzed. I froze in whatever position my body was at the
time of seizure. I once had my arm in the air for fifteen minutes. This is called Todd's Paralysis.
The aneurysm surgery did not cause any of this, but
it did make things worse. All my problems were caused by GENETICS.
After having the craniotomy,
I have learned that many people have no knowledge of brain disorders.
They either can't or won't learn about aneurysms/AVMs, seizures, or strokes.
Even though this is not the dark ages, there is still some predjucism regarding
brain disorders, brain injury, seizure activity, or anything that is "different."
Due to this, I suffered so from the meaness of some of those that I had loved so much.
I was told to sit in the handicapped row of my church. I was told to hold a sound meter and to raise my hand if things were
so loud that I might seizure. It was always, "Don't cause us any problems."
After the surgery, I was not responsive. I do not remember the first
five days after surgery. The first memory I have is of nurses trying to wake me.
It was
so scarey! I would only stay
conscious a few seconds, if I woke all. They would ask me my name. I became very
upset, crying, and at times hysterical. I did not know my name, where I was,
if I was married, or if I had children. I did not know what year it was, and I
could not communicate with those of this world, but
I was able to communicate with God. I did not know my name, but I knew His.
Later, I began to say to myself, "Whoever you are, Jesus loves you, and you
will be okay." Sometimes, I heard pretty religious music in my mind. I do not know
the names of the songs now, but then I knew them.
The first person that I could name after surgery, about five days later, was my
son-in-law. He said, "Well, that proves that you love me most! You knew my
name first!" I told him that it may mean many things for me to know his name first!
He is still wondering about that.
Most of our Aneurysm/AVM survivor's group had to learn
to do most all the basic functions again. Many of us had to learn
to speak, walk, feed ourselves, and to learn to think again. Learning to give objects
their proper name was difficult for me. I understand I called blankets, "hurries", but
if you give it some thought, it makes sense. Hospitals are cold and someone
better hurry a blanket to you!
A craniotomy is a very
difficult surgery to have an absolute perfect recovery. Many of us have been left
with memory problems and other reminders. I have holes in my head to remember
that I survived. My regular doctor said I could have fat put into those holes to
fill them out. I thought that would be wonderful! My behind is always been so big!
I could use that fat to fill out my head and solve two problems. My husband said,
"Oh no!!!! You can't do that. I knew a man that did that and he ate at Pancho's
Mexican Buffet. He got indigestion and blew out his brains!" So, I am still
an air-head. I guess that is better than being a butt-head with the possibility of
getting my brains blown out.
It takes a big fight to win the fight of recovery, but
it is well known that we are fighters! If you are not a fighter, you would
not be reading this today. If your family members are not fighters, they would
not be reading this. If you are facing surgery, just tell yourself, that
others have fought and won. You can too!
Many of us learned to walk, again.
I found it
much easier to walk than to brush my teeth. It sure was nice when the swelling
in my gums went down. I haven't
had to have my teeth cleaned in sometime. My teeth are spotless. Brushing is a very painful thing to
re-learn. I used too much force, but the hospital was very nice in providing me a new
toothbrush
every single day.
The walking is another story. I began walking by being
bungy strapped to the physical therapy tech. I remember thinking how well I could walk.
Then, Dr. O'Grady saw me walking. He started yelling, "Pick UP those feet. Don't slide,
don't slouch, get going, move it, don't stop, keep moving." Things like
that. I thought I was a private in the Army again! I won't tell you
what I was thinking of my doctor. Anyway, if you are marching like that, "heel toe,
heel toe", you
can't walk in high heels. I am nearly breaking my neck
each time I wear heels. I might as well get those "ole granny shoes" we wore
during the 60's in the U.S. Army. Thanks, Dr. O'Grady.
Many of us had aphasia and other speech disorders
that have
caused confusion and miscommunication. With aphasia, you get words mixed up, or
you can't remember a word. I would always get angry when I couldn't remember
a word.
I have said the wrong thing at the
wrong time and even upset myself! My telling the Wal-Mart greeter that I was so happy
that he greeted us on the floor, (thought I was saying at the door) caused
quite a stir. They don't need to kneel and beg me to buy!
If you have aphasia, be really careful! I tried to tell my little granddaughter that I liked her new shoes and that
they looked pretty.
What I said was that I liked the shoes as they looked like poo-poo (only it was
another word beginning with "S"). I made my granddaughter cry, my daugher mad, and I could not understand why anyone would cry over nice
shoes like that!
A hospital mishap caused my cousin to ruin her new shoes. I was showering when I
had a seizure. She jumped in the tub with me, holding on to me, yelling,
"Nurse, Nurse." Then,
after I was in bed again, wrapped in only a wet towl, and my hair standing up on
ends, she looked down and said, "Look at my new shoes. They are ruined!" I think
we both looked rather "ruined". She
said,
"You owe me a new pair of shoes!" I told her to buy her own
shoes as I didn't ask her to jump in the shower with me! She was drenched, her clothes
somewhat wrinkled, her hair wet, and
people looked at her rather oddly that day. By the way, I have found her a nice pair of
shoes at Goodwill. I hope she likes them. I got a good price on them, too! (Just kiddin,
Diane!) I loved Diane teasing me so about the shoes. She brought me so much life while I was ill. She
is known thru out our family for her kindness and goodness.
No matter what has happened, WE ARE SURVIVORS.
Most of us learned survival tips from
survivors from this family.
Please all of you who are Survivors, keep evidence of your survival by taking pictures.
It is often hard to remember how well WE HAVE SURVIVED!!! Keep Proof! Something that
you will notice in some pictures is my left hand. Lots of IVs went
into that hand. It look nearly a year to heal.
Please
beware
that the first picture shows the incision. It was taken nearly three weeks after surgery.
**************************************************************
MY SURVIVAL PICTURES
These pictures are presented in order they were taken.
This picture is of my cousins and myself. My cousins Jean
and Diane took care of me while I was ill. They are the most wonderful
ladies in the world! I am so fortunate to be their cousin.
Look into my eyes,
And you will see,
That I am proud to be,
Cherokee
(and Chickasaw, German, Irish, Scottish, Chinese and
Obviously A
GENEALOGIST)
AND SO VERY ALIVE!!
I hope that what I am writing is clear. Please remember that my first language is
Texan-ese and my second is Aphasia-ese. I understand that it is
possible that I lost 20 percent of my
intelligence. Obviously, that psychologist did not know me, and obviously,
did not know I was born blonde in Texas.
When I look at the stars each night, I give thanks for all that has been
done for me.
The Tracy Hill Cerebral Support System has joined with the Austin, Texas
Epilepsy Foundation.
We meet the second Monday of each month, 10:30 am to 12 noon at Brackenridge Hospital. Please email me at Morning1@hotmail.com and
I will give you any information regarding meetings.
I would like to thank
all that prayed for me during the difficult days. May God bless you. And please call on me if I can ever help you. I am living
proof what prayer can do. And let my story be an inspiration to you. All things are
possible with God. If this granny can survive brain surgery, there is no end
to what you can do!
SHARING WITH YOU
Our loved ones have seen our pain. We
always
put on a smile when others ask how we are, but inside, we are scared, worried,
and often
hurting. I have never seen a Survivor unduly complain. God must have chosen us
for a brain problem due to our great personalites. (You think we ought to start complaining so we don't
get chosen again?)
The Lady That Held My Family Together During Our Crisis
Is Named Sandi. We thank her from the bottom of our hearts! Sandi and I belong to
the same Survivor's Group. She saw my request for prayer and for help. She
did not know me, she just reached out and helped. She has helped hundreds of
us. Sandi is President of the Angels Club and has memberships available. My membership,
with the card and pin, have brought me comfort, brought me smiles, and sometimes,
has brought me some laughs. If you have questions about joining our angels with
dented halo's club, or about aneurysm surgery,
this lady can help! She also has brain surgery t-shirts available.
Thank you, Sandi, for all
you did for my family while I was "on vacation" that week!
Aneurysm and AVM Survivors
