NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
George, Tom and Dan (1998)
George Emery is a native of Philadelphia but currently lives in an old Victorian home in Buffalo, New York with his wife and two children. He is a librarian at Canisius College. His extended family lives in the Philadelphia area. George continues to research aneurysms and constantly scans the Internet for related information. Aneurysm links and information are located on his personal web pages, Brain Storm
12 May 1997
Aneurysms run in our family. My Uncle Joe died suddenly from a ruptured aneurysm in 1965. He was in his early 40's and left seven children. My father's fatal aneurysm occurred in July of 1970. He was 47 years old with a wife and six children. I was a nineteen year old sailor away from home for the first time. I was called into the chaplain's office and told my family was trying to reach me because my father was ill. I called home immediately and the phone was full of crying and sobbing. My Aunt Kate came on the line and told me my father had died of an aneurysm. The extended family gathered at my Mom's house had just heard of his death minutes before I called. This was her second brother to die an aneurysm.
I came home on emergency leave but in two weeks I was back with the Navy and soon sent overseas with my grief. My mother and five brothers and sisters had to struggle on at home with the daily reality of his death. My youngest brother had just turned eight years old.
My other uncles rushed to their doctors now that their two eldest brothers had died from ruptured aneurysms and they talked about their father dying young from a stroke. The doctors told them the deaths of their brothers at an early age from the same thing was a coincidence and they really didn't know what killed their father so many years before. In 1970 the doctors did not consider that aneurysms could be a genetic problem.
I always felt otherwise and I knew that I too had the time bomb in my head. My wife recalls that back in 1976 when our relationship turned serious I warned her that I might die from an aneurysm in my forties. That seemed a long way off then but it affected my outlook on life and colored my view of the world. In 1988 I was 37 years old and started worrying about the future and the possibility of an aneurysm. I had a four year old daughter and my wife was pregnant. I went to my doctor and asked him to initiate a search for a possible aneurysms based on my family history. I never had any headaches or other symptoms but the family history was enough for him to take my request seriously. A CT scan was done of my brain and the results came back negative. The relief to be told I didn't have that ticking time bomb was unimaginable. In my joy, I contacted my brothers with the good news and urged them to get checked out also.
My brother Dan's wife worked in a neurosurgery department at Jefferson Memorial Hospital in Philadelphia and a physician there recommended to her that Dan undergo the more invasive but greater detailed procedure of the arteriogram. He had also never had any symptoms but was told the CT scan may not reveal an aneurysm. His test came out positive for an aneurysm and he elected to have surgery to clip it. Dan's experience is another story. He nearly died from complications during his surgery but eventually recovered. The doctors told him a CT scan would not have found his aneurysm. I went back to my doctor.
Shortly after my brother's aneurysm surgery I had an arteriogram that revealed two aneurysms. I discussed my situation with a neurologist and a neurosurgeon. One aneurysm was located in an inoperable area that would not be fatal if ruptured. It would bleed into my sinus area and behind my eyes possibly blinding me but was not life threatening. The other aneurysm was in a part of the brain they could get to and was large enough to be of concern especially because of the family history. They recommended operating. My surgeon, Dr. James Budny, thought it would be highly unusual in his experience to operate on an aneurysm that had not bled or damaged surrounding tissue. This news came to us while my wife was eight months pregnant. We decided to wait several months until the baby was sleeping through the nights. He was born in January of 1989 and I had my operation scheduled for late June at Millard Fillmore Hospital in Buffalo.
My surgery went well and many special precautions were taken because of my brother's complications. Dr. Budny did a wonderful job. My older sister and mother came up to Buffalo to help out. I recovered through the summer of 1989 and often laid on the couch with my baby son in my arms wondering if he too carried the aneurysm gene that plagued my family. During the course of the year my other brother and my sisters underwent arteriogram which fortunately all came out negative.
I went back for follow-up arteriogram every six months for a couple of years to track the progress of the remaining aneurysm and the clipped one. Then once a year and eventually every two years. During this time several pre-aneurysms forms have appeared as technology is able to look closer into the brain. Recently I've been able to have MRIs rather than those invasive arteriogram which were getting harder and more stressful for me to undergo. I was fortunate my surgeon placed a non-ferrous clip in my head that has allowed me to move to the MRI procedure. My brother's metallic clip makes an MRI test impossible for him.
The great fear I had about brain surgery was coming out of it the same person I was going in. I wanted to test my recovering brain and I enrolled in a computer course at the University at Buffalo in the Spring of 1990. It also seemed like a time to make important changes in my life and I decided to change careers. I went on to a Masters program in Library Science at UB in the Fall of 1990 which I completed in 1992. I am currently the Library Systems Coordinator at Canisius College in Buffalo and an Internet trainer.
Finding Brain Aneurysm Support on the Web came at a good time for me. I'd been thinking about my aneurysms and the death of my father. I am now approaching the age that he died from his ruptured aneurysm and my youngest child is now the same age as my youngest brother was at that time. I see my eight year old boy and think of that clipped aneurysm of mine that may have burst this year and hope that he would have remembered me. I think about Uncle Joe and my cousins. I think how much my father would have loved all his grandchildren if technology could have saved him as it saved me and Dan. I think about Dan's new baby coming this summer.
Dan and I have recently been asked to take part in a study at the Yale University Medical School that will attempt to find the genetic marker for cerebral aneurysms. I hope the blood samples they've taken will help our family and other families like ours cope with our genetic legacy of tragedy. The researchers at Yale have given us hope that our children and their children will not have to suffer the same traumas.
Update 11 Feb 99
It was very difficult to write this next chapter in my family's history of aneurysms. I had many false starts during this past year. The following paragraphs were written early in the summer of 1998.
Last April 29th I was just getting ready to leave the house to take my son to soccer practice when I received a phone call from my sister. My brother Tom was on his way by ambulance from Chestnut Hill Hospital to Thomas Jefferson Hospital in downtown Philadelphia. He had gone to the hospital complaining of headaches but was now being treated for a probable ruptured aneurysm. Another sister, who is a nurse at Chestnut Hill, was riding with him in the ambulance.
This came as a terrible shock because Tom had undergone an arteriogram back in 1989 after the aneurysm surgeries for my other brother and myself. His results at that time were negative. The implications were frightening.
He was evaluated that night and then scheduled the next morning for surgery on the confirmed bleeding aneurysm. The aneurysm was said by the doctors to be about the size of a golf ball and they suspected two previous bleeds. Tom had been complaining about headaches for several weeks but dismissed an aneurysm as a possibility because of the previous negative arteriogram. He couldn't have an aneurysm. He thought it must be something else but he was wrong.
He went into the operating room early that Thursday morning. I was in Buffalo worried sick. I was scheduled to teach a library web design class that afternoon but cancelled it. How could I stand in front of people and talk while my brother was in surgery. By 10 am I was on the phone with the airline. Fortunately, I already had plane tickets to Nashville because I was registered for a library conference the next day. I took the tickets to the airport and exchanged them for a flight to Philadelphia. I was able to be with my family in the neurosurgery intensive care waiting room as Tom was brought down from his operation.
My mother was so strong. She had lost her husband to a brain aneurysm and now was preparing herself to nurse a third son through aneurysm brain surgery. It was especially hard because Tom was single and lived with her. He was there to take care of her but now she would be caring for him.
Tom's surgery took about eight hours but the aneurysm was clipped. There was some damaged tissue but the doctors were hopeful of a full recovery. I spent the next five days with brothers and sisters and stayed at my mom's house in Philly. It was exciting to see Tom improve each day. Several days after I left to get back to my wife and children he was able to leave the intensive care unit. He was home again less than two weeks after his surgery and has steadily improved. He is looking forward to getting back to work again at the end of the summer.
I'm sure that he will join his two brothers in the Yale Medical School brain aneurysm genetic marker study. The next generation in our family is now also undergoing testing for aneurysms. We have three nephews in their twenties and one recently tested negative and the others will also be tested soon. Only the males have tested positive in the family and we can only hope the women are free of this trauma. However, my sisters were tested in 1989 but now they are talking about getting tested again. It is frightening to think that one test is not enough and now our family must confront the reality of continued vigilance and testing.
Update Feb 99
Tom completely recovered and was back at work by the end of the summer. Everyone in my family was tested again only this time we've been getting MRAs rather than the intrusive arteriograms. My sisters' boys are in their mid twenties now and the family worries. I had another MRA last month to keep track of my remaining aneurysms. I am now the same age my father was at his aneurysm death and I'm thankful for the advances in technology that have saved my life and my brothers'. I continue to research aneurysm treatment and I'm encouraged by the progress. It's amazing to think that the aneurysm in my head that doctors said was inoperable ten years ago could possibly now be treated with new techniques. We have not heard anything from the Yale Medical School genetic marker study. These studies take years but we are still hopeful.
Update: 6 October 2005
Its been over six years since I've last updated my narrative. I continue to get MRAs every couple of years to monitor my clipped aneurysm and watch the untreated one. My doctor tells me that improved technology makes my inoperable aneurysm a candidate for coiling if necessary.
This past year we finally heard back from the Yale Medical School aneurysm gene study that my brothers and I have been participating in for about ten years. Recent grant money from the National Institute of Health reinvigorated the study. They contacted us and began collecting blood samples from our extended family including spouses and children. My father's surviving brothers and sister and their children have become part of the study. We are hoping to be able to contribute significantly to the understanding of this genetic disorder.
And our family history of aneurysms continues. My youngest sister was recently tested positive for two aneurysms. My mother has been distraught over the thought of one of her daughters going through the surgery that has had such an impact on her three sons. The Yale doctors from the study were also surprised that a female has for the first time in our family developed an aneurysm and they had to rethink some of their assumptions on our particular family history.
Continued testing has determined that my sister's aneurysms though still small had been growing. Her doctors decided to do something about her them. Under different circumstances they would have probably continued to monitor her because they were still relatively small. However, the family history dictated a different course of action. More testing indicated that the coiling procedure may have worked for one aneurysm but probably not for both. They also felt that the coiling procedure would probably need to be repeated at some later date. They recommended getting both aneurysms clipped. She then had to suffer the long stressful ordeal of waiting as different dates for doing the operation came and went for various reasons.
The operation to clip both aneurysms was finally scheduled for July 18th 2005. To our family's dismay this was the exact day thirty five years earlier that my father died from a ruptured aneurysm.
I was spending that week on vacation in the Adirondacks in upstate New York. Very early on that Monday morning of July 18th I left my wife and son at our rented cabin to make the eight hour drive to Philadelphia. My sister's operation began about 7:30 a.m. at the Thomas Jefferson University Hospital where both my brothers had their surgeries. I was able to be in the hospital waiting room with her husband as she came out of her eight hour surgery.
The surgery itself went well but she had a difficult time coming out of the haze of anesthesia complicated by the cocktail of drugs necessary to ward off the malignant hyperthermia syndrome that has also affected my family. It took several days for her to reach a satisfactory neurological baseline. During that time she suffered from a blood clot in one of her legs that cut off circulation. The doctors were unable to treat her with the usual blood thinners because of the brain surgery. She had a very real risk of having her leg amputated and had to undergo vascular surgery the day after her aneurysm surgery. Finally by the end of the week things were looking good for her and she began talking, laughing and being more herself. I was still worried but able to drive the eight hours back up to the Adirondacks and rejoin my wife and son on vacation for a day before heading back to Buffalo.
It's been three about two and half months now since her surgery and she is recovering nicely at home. Her leg is still sore and she walked with a cane for what seemed like a long time but she spent the rest of the summer resting and recuperating. She knows from the experience of her three brothers how long it takes for things to get back to normal.
This fourth sibling in our family to undergo aneurysm surgery has been particularly hard on our mother this time. It was especially difficult as this is the first of her daughters to undergo this surgery that her husband and our father did not survive.
My own daughter turned 21 recently and last week she underwent her first MRI brain scan. The results were negative and our family is thankful. My son is 16 and we have a few more years of worrying before he is tested. We are hopeful that the problem gene is sufficiently diluted in this fourth generation and maybe then I can finally end this narrative.
My resource site for brain aneurysms Brain Storm.
Discussion, comments, or questions: George Emery
© Copyright 1997 George Emery
All Rights Reserved - Fair Use
acknowledged
