NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
Kathleen in Mobile, AL, 2004, as a volunteer
with the Hurricance Disaster Recovery group
June 10, 2001:
I had chest pain, well it was stress. I was working a
full time job and a part time job. Going to college part time,
raising a 11 yr old son, and helping my parents move to another
home. So no big deal, I needed to slow down.
July 31, 2001:
More chest pain, was put on Isobride. That is when my
life started a roller coaster ride to hell.
August 2001:
Started having wicked painful headaches, the shoot me
and get it over with type. One day I fainted from the pain and when
I woke up, I was embarrassed. I have not wet myself since I was a
baby. My family doctor said it might have been a seizure and sent
me for tests. The first Doctor thought it was aneurysm and sent me
to the Cleveland Clinic for more tests. I was told it was an AVM
and there is a 80% chance that the vein that is doing all the blood
return will rupture.
September 2001:
Surgery was performed at the Cleveland Clinic to
relieve me of my AVM. I was bald and had a nasty looking incision
along the right side of my face and it went across the right side
of my head ending at the back of my head below the ear. My balance
was a bit off and my right eye was not focusing. My son made me
wear hats, the incision was too ugly for him. Sutures removed 2
weeks later.
October 2001:
I had drainage from the incision. The Doctors had to
debride it and put me on IV antibiotics. I had a Staph (MRSA)
infection. The Doctor had cut the 7th cranial nerve this time and
remove part of my skull. The right brain flap was infected, and
could not be save. Now I was also dealing with a mild form of
Bell's Palsy and trying to be careful as I had like a baby's soft
spot across the right side of my head.
January 2002:
I was admitted to the local pysch ward. Depression had
set in. One Dr. thought I was Bipolar and it was caused by the
Brain surgery I had. It took me 2 weeks to prove I was mentally
competent, just depressed and angry over what had happened to
me.
February 2002:
This is the last surgery! The Dr.s went in and put in
a plate to replace the right brain flap. Life will be beautiful
now.
April 2002:
Life is great. Had some swelling over the plate, but
not to worry. On April 10, I received a release to go back to work,
I was getting my life back. As for the swelling, "don't worry about
it. If it is still there in 2 months call us for an appointment. My
return to work date was 4/22. I got busy on getting ready for the
Easter Seals fund raiser that I have done for the last 7 years. I
made plans to return to cooking and serving at the soup kitchen I
volunteer at. Also the scout troop my son is involved in was
planning a hike on the Appalachian Trail. This leader was ready to
go. I started driving my car. My life was back. Got an ear ache,
spiked a temp. April 17 admitted to Cleveland Clinic. I had another
Staph infection. This time it was MSSA. The plate was removed. The
Doctor said it must have had bacteria on it when it was put on my
head. He told me that the plate is just cosmetic, I didn't need it.
I guess I should give up climbing trees and playing football with
the kids. I did turn my resignation into the Scout troop, can't
risk falling down and hitting my head. What if it happened
somewhere in the boonies and my scouts had to deal with it. It is
not fair to them to put them in that position. Stepped down from
the Easter Seal Fund raiser. It involves a lot of walking on uneven
ground. I feel I can't commit myself to anything until the Dr.s at
the Clinic tell me I am allowed to live again.
May 2002:
I sit and wait and wait and wait. IV Antibiotics pump
into my body every 4 hours. My head hurts, my sinuses hurt. I have
become a whiner. Which is not me, I finished a basketball game
years ago with a broken foot. Just taped it and kept going, didn't
say a word till after the game. Now all I do is cry and demand
answers. I am learning all I can about Staph infections. I think I
will have a plate put in, but I am not going back to Cleveland for
it. There has to be another Dr. that knows how to do it. I want my
life back and I will fight with all the power I have left to get
it.
I beat Cancer, had 8 surgeries for it. Considered myself cured this Feb., 5 years without a reoccurrence. The funny thing is "Mentally I handled the cancer better than what has happened to my head".
Update: 11 May 2003
I feel like I have come to the end of my journey. From what my doctor tells me now, I just don't know what to do now. My was story was 45 and no more surgery. I have always kept laughing and joking thru all the crap I have endured. Now I can't handle what is happening to me now. I changed my nickname to Dandelion, because you know those suckers are hard to get rid of, they just keep coming back. But now I understand why it is call "Practicing Medicine", the Doctors are still practicing. Just wish they would find a new guinea pig. I am now losing my peripheral vision, and have been diagnosis with a clinically induced Alzheimer's.
Today my right side is numb and my foot is dragging. My mouth id drooping on the right side too. I did go to the ER this week. I was so humiliated. I heard the Doctors talking at the desk, so did my roommate, our room was the farthest from the desk. They diagnosis me as a hypochondriac. It was their laughing after saying my name that hurt the worst. I know there is something wrong, but the ER Doctor said quite "firmly" that there is nothing wrong with you, GO HOME.
In 2 months I celebrate 2 years of being a medical experiment. I just wanted to be the person I was before the Cleveland Clinic said they fixed me. Today I realize that I will never be that happy, always smiling, life loving person again, the clinic buried her. I just want to sit in my house and hide I don't want anyone who knew me before, see me now. I surrender to the Doctors
Update: 01 February 2004
I am still here and still alive. I did find a good Doctor here in Elyria, Ohio. Although Dr. Gale Hazen does not understand my sense of humor, he understands my head. He is a great neurosurgeon and I will work on his sense of humor.
He put a new plate in last year with no Post OP infections this time. It is funny how the alphabet becomes part of your life. AVM MRSA MSSA and now TBI. Because of the above surgeries I have been diagnosed with Traumatic Brain Injury. My symptoms remind me of a person with ADD (Attention Deficit Disorder) with AD (Alzheimer's Disease) I hide this disability the best I can. Lots of makeup and a good hair style covers the scars.
My long term memory is good and I have found tricks to back up my short term. As for my balance, I found a good way to disguise that too. Being very Irish, no one questions why I carry a Shillelagh, an Irish version of a cane. Using a term found in AA (Alcoholics Anonymous), "Fake it till ya make it", or until a cure is found.
Dandylions are those little bursts of sunshine in your yard. And as you know, they are hard to kill, they just keep coming back.
Update: 15 February 2005
It is hard to believe a year has gone by already. 2004 was the best year I had in the past few. I was able to cope with my deficits and feel like a real person again.
My balance had straightened out. There were times when I seemed a bit tipsy, but by just touching a solid item, such as a wall with my knuckle, as I walked, I did good. I had a visual field study done for my insurance Co. I have Bell's palsy on the right side of my face, the eyebrow is starting to block my vision. A Brow lift on both eyes was reccomended. The doctor has left my Insurance plan, now I am looking for a new doctor.
I am involved in my County's CERT (Community Emergency Response Team) as an Instructor for my County here in Ohio. This is something I could teach from my long term memory. I used notes to reinforce the short term memory issuses. Then I started to realize that the more I used my noggin, the more I remembered.
I guess I did well. I received an email request to go to Atlanta, and participate in the Hurricance Disaster Recovery. I went from Atlanta to Birmingham AL, then to Loxley AL, from there to Mobile AL. It felt good, that my skills were coming back and could be used for something important. I started to feel like a real person again. The person before my brain thing (AVM) started. I departed Cleveland OH on Sept.11, 2004 and returned home, Nov. 6, 2004. It was great to be productive, and realized that I need to find a job. This being home on Social Security is OK, but I need that " I can do it feeling."
I did suffer a set back December 29, 2004. I went to the ER, not sure what was going on with me. The doctor told me I had a TIA (Transient Ischemic Attack). There goes that alphabet thing again. I was able to talk and walk normally about 5 hours later. I was laughing with the doctor, I felt like I was repeating my AVM problems.
But I am getting back on track again. Hopefully with enough memory and practice, I'll be able to step dance this St. Patrick's Day!
But today it feels great to be alive! Each day I check for those Dandelions, remember they just keep coming back!
Update: 5 February 2007
In March of 2005 I spent a week and a half in the Cleveland Clinic's Epilepsy Monitoring unit. I looked like the bride of Frankenstein with all those wires glued to my head. Diagnosis was "Right Temporal Lobe Epilepsy" Now I have the Technical term for my seizures.
While I was in, I felt like I was at war with the Doctor's. They sent in a NeuroPysch to do a test. He started to use the same test I did back in 2004. I told him my short term memory is kaput, but long term is great. Then I started to ask him the same test questions from memory. I asked for a new version or new test and was not granted my request. You may say something to me. And for a day or 2 I can not remember it. But I can repeat it back word for word after about a week. When he stated they want to do the test to see if I was back to normal!!!! I Blew!
Does this mean I will get my job back. Will the money is my pension plan be returned after all I had used it to pay medical bills. Well at that point he suggested some anger management. Yes I am angry, but not for the reason you think. I may have a brain problem, but that does not automatically mean I am stupid.
A Doctor tried to put me on a new seizure drug, but seemed a bit tiffed that I called her in to tell her I could not take it due to having vasospasms of the heart and was on a heart med that would have a bad interaction with the new seizure drug.
2006 saw an increase of seizure activity. Came to find out that severe emotional distress is a trigger for me. My Father and Brothers buried my mothers remains without telling me. I found out in April and had another TIA. When ever I would approach the family for an explanation, I would get worked up and a seizure would follow. Of course I would not sleep well and become sleep deprived, that is a trigger too. My meds have been changed. Maybe we will get it right one of these days.
I was admitted to the hospital on Dec. 29, 2006 for injuries from a grand mal seizure. I had got a concussion on the way to the floor. I had hit my head on the corner of the stove and cracked a couple of ribs when I hit the floor. A neurologist was called in to see me. I had a hard time remembering all that my brain and I had been thru and the dates. Well I depend on my PC to do a lot of remembering and reminding for me. So I instructed the neuro to go online and search my name with AVM behind it. He was able to see my story, and then knew to call for other information he needed. I was discharged on New Year's Eve. With a new drug regiment to follow. The Neuro commented on this site. He had read many of the stories and had learned much about the patient's side of the story. He plans to keep reading.
Jan 2007 began the change in me. I had started staying home and withdrawing from activities, I was afraid of being embarrassed if I had a seizure. But that is not me, time to take back my life and live it. I no longer associate with my family. No stress-no seizure. I have become involved in a TBI support group near my home. They needed volunteers to come in answer phones and help with databases. Well that is right up my alley. The group has outings and get togethers for coffee and talks. I am still involved in emergency preparedness, now am volunteering in my county to put a list together of people with disabilities. It is a list of people who would need help evacuating if a disaster happened in their neighborhood.
I have began a friendship with another of our family members. He faces a resection of an AVM also. He and his wife will come from out of state to the Cleveland Clinic for his surgery. I learned that it is hardest when you go it alone. And I never want to see someone else go it alone. I have told him that his wife will not be alone in the waiting room, I will be there. I had invited them to stay with me. The clinic is an hour away. If the wife does not want to be that far away in case of an emergency. She can stay at the hospital's hotel and I will come in everyday until he is ok. Sharing our stories helps ease the fear.
God Bless all of Us! And keep us strong to face, learn, and over come what we must face.
P.S. A Doctor asked me when I was going to do an update. Please keep your stories updated. I have learned what a resource this can be for medical professionals who are trying to help you.
Discussion, comments, or questions: Kathleen Dembek
© Copyright 2004 Kathleen
Dembek
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