AVM Research Fund Blog

Replies: 11 Comments

Since my earliest recollections I had experienced what I termed 'episodes' or 'out-of-body-experiences' medically known as 'jamais vecu'(similarly to deja vu) and had two major blackouts whilst at work living in England when I was 16 and 17. Although I was taken to the emergency dept. at the hospital I never underwent any investigation such as CAT scans or such. I was told it was probably migraine since I was having many similar symptoms: blackout, nausea, speaking out-of-context not knowing where I was, and behaving irrationally, and experiencing stiffness and tingling in my hands and fingers.
I went on to get married at 19 and then we immigrated to New Zealand when I was 24 years old.
At the age of 29 with 4 young children (2 to 7 years) I started to have more severe presentations of which I was unaware. I would speak out-of-context and have’ absences’ for longer periods of time when I couldn’t remember what I had done or said but which my husband and friends would alert me to. One such incident happened when I was driving which prompted me to take action to get to the bottom of this.. I went to my GP who told me it was stress, then depression and issued me with anti-depressants. I attended a psychiatric doctor who confirmed that I was not depressed but was epileptic. My GP reconfirmed this and prescribed epilim for me. I was not convinced by this diagnosis and sought a neurosurgeon who also confirmed that it was epilepsy: So all the medicos were of the same opinion - that I was epileptic. The saving grace was that the neurosurgeon had ordered an EEG and MRI for me to undergo whilst stressing that it was not a tumour or aneurysm but just epilepsy. The EEG which came back inconclusive did still not dissuade them from their misdiagnosis. However the MRI revealed a black blob in my brain set the course for a different course of action. I was told that they were so happy to have found this AVM since they only usually find them once they haemorrhage big time. I was sent for an angiogram which revealed the large size of the AVM in my right temporal lobe and was told that I would have to have a craniotomy and excision of the AVM. The short version of the story is that I finally underwent stereotactic radiosurgery in Dunedin at the advice of a newly transferred neurosurgeon to Christchurch hospital who had recently been the lead man of this procedure in Dunedin, and testified that ‘If I were his wife he would not be able to allow me to undergo the invasive surgery until they had at least tried to shrink the AVM somewhat’

The stereotactic radiosurgery was so completely successful, despite not being recommended for the size of my AVM, that two years later I was given the all clear and told that I have no residual effects from any intrusion. I remain asymptomatic and medication free. I and my surgeons also know that my healing had to do with many miracles through prayer along the way which culminated in the big miracle of being spared to raise my children to know, love and serve God.
I now live in Australia on the Gold Coast and am 39 years old.

Michelle

MICHELLE said @ 08/26/2006 09:35 AM EST

Hi, I live in Australia and have just absorbed very word of your wonderful website. My daughter is 15 years of age and has just been diagnosed with an AVM. As with other contacts, I have gained more insight about AVMs from your wesite than from all the neurosugeons we have spoken with to date. We have a lot of further tests and talks to endue in the future however we are pleased that we were alerted to the problem early as a result of an unrelated MRI. We can now hopefully fully treat the AVM before a hemmorhage or other complications occur. Thankyou so much for giving me the information and confidence to now ask vital questions about the abnormality and treatment before we blindly proceed further. The loss of Leslie will never be in vain. She will help my daughter and many other people around the world.

Andrew Burton said @ 08/20/2006 08:55 AM EST

HI MY NAME IS MICHELLE AND I AM 29 SOON,5/11, TO BE 30. I HAD MY FIRST STROKE WHEN I WAS EIGHTEEN WHICH HARDLY LEFT ANY SIGNS. THE SECOND STROKE OCCURED IN JULY OF `03. THIS WAS THE KILLER, MY VISION IS DISTORTED, I LOST THE ABILITY TO WRITE(JUST TO LET YOU KNOW I'M TYPING WITH MY MY LEFT HAND ALL THROUGHOUT THIS ESSAY), MY RIGHT FOOT IS AFFECTED, I STILL HAVE HEADACHES AND I STILL HARDLY HAVE AANY FEELING ON MY ENTIRE RIGHT SIDE, THE AVM IS LOCATED RIGHT BY MY BRAINSTEM. I HAD X AMOUNTS OF EMBOLIZATIONS, 2 RADIO SURGERIES AND X AMOUNTS OF ANGIOGRAMS. DURING MY LAST STROKE I HAD A SHUNT PLACED IN MY HEAD.

MICHELLE VALEK said @ 05/02/2006 09:19 PM EST

I am 24 years old and was diagnosed last week with an AVM. I was in class and blacked out while watching a movie. I hit the floor and had a seizure. I do not remember any of it but my doctors are wonderful and I will be doing duel treatments. I did have seizures between the ages of 5-7 but they put me on medication for a while until I showed no signs of having another. I was very touched by Leslie's story and how you guys have reached out to help others with these conditions, it is very hard to find support.

Sarah Ayco said @ 02/08/2006 06:00 PM EST

i'm a 29 year old woman who just had a second stroke caused by the a.v.m. i have at the base of my brain stem. this last one left me in bad shape.

amy compton said @ 02/02/2006 03:04 AM EST

I was sad to read Leslie's story. I am 60 and 5 years ago this week my beautiful 19 year old daughter was diagnosised with cavernous malformations. She has had 2 craniotomies at Johns Hopkins. Now she's 24 and we live life differently and cherish life greatly.

Thank you for the work you are doing. So much research needs to be done and I applaud your efforts.

Jeanne Butler said @ 08/08/2005 09:12 AM EST

To Jeffrey:
I have gone through 10 years of in and out of Columbia Presbyterian in NYC for my AVM. They have saved my life. I suggest that you contact Dr. Randolph Marshall at Columbia Presbyterian. His phone number is 212/305-8389. If nothing else, it's another opinion. Good luck.

Dana Moscardelli said @ 06/27/2005 11:20 AM EST

I have an AVM on the left side of my face and neck spanning the bottom of my temple to the bottom of my neck. I have had an MRI done and they said that it is a low flow AVM and that a procedure is elective however, I am unable to enter into the military due to the fact that it has grown over years past. I am not sure what the next step to take is.

Jeffrey Scott Rust said @ 05/04/2005 05:38 PM EST

Everyone has a life to where they need to live every day to the fullest and it shows that Leslie did. Hi, my name is Jennifer Henry and I am 22 years old. When i was 10 I had an aneurysm and My neurologist Diagnosed it as an AVM. I had to have Brain Surgery and got it fixed within the knick of time. The Dr.s' said if it happened within the ages 15 or over then there would be no way of me being alive today.

Jennifer Henry said @ 05/01/2005 06:22 PM EST

Thanks for sharing Leslie's Story, and for the valuable information about AVMs from this incredible web site. Long, long story short....I have been diagnosed with a dural AVM and I am 54 years old. It was discovered when I was having an MRI on my shoulder which I injured when I fainted in Sept. '04 ...it is in my spinal cord between the T8 & T9 area, but it shows no signs of hemorrhage. I have had a few of the symptoms especially in the last 2 years, but nothing that screams in pain. So, my doctors don't seem to be very concerned at this point. In fact, I have learned more about AVMs from your web site than I have from either one of my doctors. My MRI has been sent to Barnes Hospital in St. Louis, but so far no definite decision has been made, of what the next step should be for treatment of my AVM. After reading Leslie's story and absorbing all of the information from this fabulous site, you can bet on Monday morning I am going to be calling my doctors and asking more questions and getting another opionion. I didn't survive a heart attack and subsequent heart by-pass at age 49, to still lose my life because I didn't check it out further. I owe that to my husband, 3 daughters and 7 grandchildren!
I'll keep you informed of my medical status, and plan to donate to Leslie's Memory Fund.
What a wonderful way to keep the memory of Leslie alive forever, and help others with AVMs like me get the information that could save thier life! Thank you!

Linda said @ 04/23/2005 06:24 PM EST

Leslie died when she was only 61. She was a beautiful, kind, loving, and giving person. She and I were married for almost 40 years, blessed with 2 sons and 3 grandchildren whom she loved with unbelievable intensity. She was the consummate mother and grandmother with the capacity to give and then give more, asking for nothing in return.

Fortunate to retire early, we moved to the west coast of Florida. She loved her new home and lifestyle. In our working years we moved frequently, and I often would caution “don’t do this or that because who knows how long we will be here.” I was so happy for her that she could finally make a home that would likely be forever. She lived in this home for less than 2 months and never had the chance to make it her own.

Leslie had her first seizure when she was 18. In those days the diagnostic tools were not yet available to identify the cause of the seizure. It was attributed to being “one of those things.”

When she was about 42 she had another seizure. The recent advent of CAT scans finally enabled the diagnosis of an AVM. Fortunately, neither of her prior seizures caused a bleed. Regardless, those of us who knew her were aware that there were noticeable changes in her memory and organizational skills, among other symptoms. The AVM had taken its first noticeable bite.

We sought the best known neurological centers in America to review Leslie’s CAT scans; all the experts agreed that the risks inherent to the available surgical options were not warranted due to the size of her AVM. The statistics indicated that the longer one lives with an AVM the less likelihood of further trouble. At 61 years we thought her odds were good. Despite taking anti-seizure medication 4 times a day at the direction of her neurologist, she led an active life. We believed that she would die with the AVM not from it, so said the statistics. Leslie's AVM hemorrhaged on December 4, 2004. She died 4 days later.

AVMs are one of the silent killers. I believe that certain fatal aneurysms and other intracranial hemorrhages are in actuality AVMs. It seems that there must be a greater incidence of AVM in the population than reflected by the statistics. Certainly there are surgical techniques for reducing AVMs, but the risks of the currently available surgical options are too high for cases like Leslie’s. AVM is complex, poorly understood, and not readily diagnosed, deserving of more research funding for the betterment of the general public. It is too late for Leslie and untold others, but together we can help ensure long life for the AVM afflicted at risk today.

Bob Munzer said @ 01/20/2005 09:09 PM EST

01/15/2005: "AVM - Personal Narratives"