Margaret Elizabeth Ashe
A Search For Help
15 April 1998
A couple of months ago I contacted you about my daughter's AVM. The doctors had given up on her and we were quiet desperate. She was hospitalized since 18 January, 1998, until last Wednesday (8 April, 1998) when we returned from Toronto where a Dr. Terbrugge and Dr. Wilensky performed over 24 hours of embolization both on the venous and arterial side of her AVM. The surgeries were done in three sessions. We found these doctors through some local Neuroradiologist formerly with Emory University School of Medicine. They had performed the venous side three times previously and The doctors at Emory refused to do the procedure.
It took an act of Congress to get our insurance to approve and fly us to Toronto by Air Ambulance and then before she was transferred she became septic with a infection of her blood at the IV site and went into congestive heart failure. My daughter is only 17 years old and obviously her age helped her withstand all the horrible things as we have her home now.
The surgery was not completely successful as they were not able to stop the complete flow of blood. They put all kinds of metal and glue throughout the large fistula and the pedicles that had drawn blood from all her major organs making it impossible for her to digest food. She had previously been on TPN and is now eating small amounts. She remains paralyzed from waist down and has lost a lot of trunk control but we have bought her some time and it is the hope that the thing will just coagulate and go away.
She is definitely better after the embolization. We are now in the process of trying to get her back to a decent type of life. It has been very difficult but I am writing this letter to share this good news.
While we were at Egelston another child, 8 year old was admitted with a brain AVM. She died while we were in Toronto. After a year of battling this thing, I feel I have some experience and some insight to what one feels as a mother. I was able to offer some support to the family of that 8 year old if only to affirm their feelings. Please keep my Email address for anyone that I may be able to help. Thanks for your support. I have not given up and won't until we find that right combination that will do away with her AVM. I understand that a lot of work has been done in France. I have vowed to find someone who is doing research on the chemical side of treating these malformations and preventing the growth of the blood vessels.
Update: July 1999
From my last note, we had just arrived home in the Atlanta area from Toronto where she received several hours of embolizations on both the venous and arterial side of her AVMs. The new thing that we learned in Toronto was that my daughter, age 17, has multiple AVMs. They are all over her back and spine and they did not stop the complete flow of blood through the ones right under her heart. Despite this information and a blood clot that went to her lungs about mid April she went to the high school Prom in May, she attended the July 4th fireworks, and makes plans every day about her upcoming Senior Year and college despite that she is in bed most of the day.
She has more paralysis now and started having nausea and vomiting two months to the date after her embolizations. She has a port for IV medications at this time. After consulting with all her doctors, they do not believe that another embolizations is possible. We face every day with love, faith and hope.
I still carry resentment toward the medical field and particularly the insurance industry which I feel have abandoned her. I do research daily hoping to find that magic bullet. What we need is that particular drug that will stop the growth of blood vessels. One doctor suggested Interferon but it makes people sick and we do not want to make her worse. Everyday is a balancing act.
I hope that those who read this will say a prayer for her. We are strong in our faith of God and have lots of support from family, friends, and community. Cards can be sent to her at the following address:
Margaret "Elizabeth" Ashe
340 River Rd.
Jonesboro, Ga 30236
Update 3 Aug 1999
Everyday for us is a real challenge. She has been hospitalized several times since January for blood infections and anemia. She is currently preparing for another discharge soon. She recently was a patient at Emory and today is in a stepdown.
It takes a lot of energy that is wasted toward healing in dealing with doctors and health care professionals who have no compassion for the amount of pain she is enduring. We have an excellent Pain Management doctor but other specialist do not support and sometimes oppose the narcotic use. I was wondering if any research has been done on the pain management of AVM's. What we are experiencing now is that some doctors. from GI doctors to Plastic Surgeons do not have any recognition of the need for narcotics.
Elizabeth's AVM's are all throughout her back when originally they were only T1-12. They are visible to the eye. She has pain episodes similiar to other Spinal AVM people that include vomiting, lowered blood count, and low k, and uncontrollable pain for about 24-36 hours before she bounces back. In these episodes the veins in her back look engorged and pulsate. As of right now we have no treatment for these AVM's other than pain management. I would appreciate any suggestions from our readers including names of doctors.
We have sent films to the centers in Arizona, Indiana, Toronto, Besthesda, Maryland, and of course, Atlanta, Georgia, where we live. The latest place we have sent films is Boston and awaiting a response. The consensus is that surgery is not feasible. I am also interested in any "alternative type treatment" outside the US.
In spite of the AVMs, Elizabeth has graduated from high school with honors, attended, and received an award from the Black Tie Affair of "11 Alive Community Service Award", and attended her Senior Prom. She also has created her own web page for TEEN HELP. No one knows how hard it is for her to do these things other than those readers who have walked down this road also.
I appreciate all the suppport this web site has offered and all the prayers.
Update 25 Mar 2000
It is with much sadness
that I give you an update on my daughter's AVM. She had been
deteriorating since last November. She had become bedridden since
about last November. She and I had become a real team and I never
left her for anything these past few months. She was admitted to
Emory Hospital just to get her feeding tube fixed and have some
specialist see her for her nutrition. She was found to have
congestive heart failure due to the damage the AVMS had done to one
side of her heart which the Drs told us could not be repaired in
her condition. Elizabeth was told of her condition and she left the
Intensive Care Unit eating jello and bossing the ambulance drivers
around on March the 7th. Elizabeth died quietly on the night of
March 10 at home surrounded by family and many friends. Her funeral
was very beautiful and spiritual at St. Phillips Benizi Catholic
Church. Her body rest in a cemetery less than 1/2 mile near our
house. I appreciate all the cards and support I have received from
our AVM support Family.
Discussion, comments, or questions: Peggy Ashe
© Copyright 1998 Peggy Ashe