August 22, 2008
Article Written by: Gerry Briggs, Eugene Oregon
One, self-important, hostile, and verbally abusive, the other troubled, confrontational, but with 
survival instincts, both were born with mental illness, the last frontier in polite conversation.
How do you tell this tale to people unfamiliar with Bipolar or Schizophrenia? For them, there is no frame of reference. If someone asks you about your children, its sort of a show stopper. “Oh I have one child working in Seattle and the other one is on social security payments because he is mentally disabled. If you’ve never seen the classic “deer in the headlights” that line is guaranteed to get results.
My son went away to college and collapsed. He was living with my mother and was registering for City College in Santa Barbara and became disassociated. He would sit in his room with the lights off and my mom would go in and he just sat there. There were other incidents but the short of it was he came home so we could get him to a doctor to see what was wrong.
That was in May, 1990. The next three months were almost incredibly insane. We were remodeling our kitchen and I was cooking in the garage. My Ex-husband and I were also track and field officials for the Goodwill Games and of course worked for a living as well. Chris was in three different psychiatric units, there many trips to the emergency room at 11:00 PM because he was in crisis, and then Chris and I flew to Dallas, Texas where he committed himself to a psychiatric hospital for 11 months.
Three months later he had his first brain surgery for an AVM. He is a brave, beautiful, kind-hearted man with a brain and body chemistry that betrays him. He does the best he can everyday with very little reward. If I had millions of dollars I would set up a special-needs trust for him, buy him a little place of his own, give him an allowance, and art teacher and the monetary freedom to be as happy as he could be before he passes from this life. His wish is to have a family and love.
My Daughter-in-law is another story. She started out the love of her fathers life. He wanted her to shine and fulfill her unexplored potential and to go forth in the world and be happy. That charming beautiful little girl that use to climb into her daddy’s lap disappeared around 12 years old. It’s a long ugly story.
Possessed by demons we could not see, and convinced that she was THE “Queen of the Universe” and everyone else must do her bidding, she bounced in and out of jail, escaped to California, and was rescued by her Mom and brother in the sense they got her into the law system. She was made a ward of the court, got help for the drug addition, and was diagnosed with schizophrenia.
After 3 months in a psychiatric unit and then 3 months in a half way house, she was the charming, beautiful girl-woman her daddy loved. At that point there was hope. Her medication for schizophrenia was working. We went to see her and she was smiling, responsive and a changed person.
A year later she is off her meds, got in her 1986 car that her grandparents gave her to help her establish a new life, took off to “kill her mother” and ran out of gas on the highway and just left the car in the middle of the road. Her mom managed to get her to the hospital where she will be there for 72 hours observation. She has been off her meds for months and is cycling into violent behavior. And the beat goes on. . .
Their lives go on. . . Real life drama, not real TV. The moral of the story? Hold your children close, hug them, see them as children and appreciate their innocence because when they grow up, all bets are off.
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Decisions pertaining to endovascular treatment of brain arteriovenous malformations (BAVMs) require complete information with respect to the clinical circumstances and the imaging characteristics including the angioarchitecture of the AVM as well as the brain. With these factors in mind a clinico-morphological analysis can be made to formulate the best plan for therapy, which might include embolization as well as other modalities. The angioarchitecture of the AVM will determine both the approach to the lesion and the expected chances of reaching the therapeutic goal. The various treatment modalities and treatment skills available may change in time, whereas the original objective, as determined by clinical and angioarchitectural features, will likely remain the same.
Indications for Treatment of BAVMs
The discovery of a BAVM in a patient does not represent an automatic indication for treatment. Various attempts have been made to devise decision analysis programs to determine the risks of conservative vs. active treatment of BAVMs. All are based on the ability to deal with the lesion from a purely surgical viewpoint. They did not consider the role of embolization as a preoperative adjunct, a sole mode of treatment (when complete obliteration of the malformation is obtained with a permanent agent), or as part of a combination of treatments.
While some surgical investigators have started to realize that not all BAVMs carry the same risk for future hemorrhage the recommendation for management has continued to be the same. Obliterate (remove) the AVM and use a method that has the highest chance of accomplishing that in one setting: surgery. Limiting factors being surgical accessibility (AVM size, location, etc.), and therefore anticipated surgical morbidity and mortality associated with the treatment. Such strategy fails to act upon growing evidence in both surgical and endovascular literature that all BAVMs are not the same and do not carry a similar risk for future symptoms and therefore the risk of treatment should be less than the natural history of that particular lesion.
Targeted embolization is a viable, safe and effective means of therapy in appropriate circumstances. At the same time when building a rationale for management strategy based upon data from the literature one would realize that many of the reports are necessarily biased because of referral patterns. Although such data (hemorrhagic presentation rate, natural history, etc.) may very well support their recommendations for treatment strategy of their referred group of patients, it may not apply for a different (population based or other) referred group of BAVM patients. In addition when a treatment strategy is to be considered it should take into account the local expertise available (endovascular, neurosurgical and radiosurgery) as well as their treatment record of BAVM patients. Their treatment data should be known and compared to standards published and from time to time be reassessed.
An incidentally (during screening) discovered cortical micro BAVM in an older patient with HHT disorder does not have the same prognosis as a large thalamic AVM in a young patient presenting with progressive neurological deficit and therefore their management should be different. Yet the former can easily cured with low morbidity and no mortality while the latter can only be partially embolized; treatment strategy should not be based on our capacity of achieving cure but rather on the post therapeutic clinical benefit expected over time and its related price in terms of risks.
We therefore recommend that in addition to the clinical information great care be given to the analysis of the imaging studies and in particular the angioarchitecture. The angiogram is performed with the aim of obtaining a complete study of the vascular system: the supply to the AVM, the angioarchitecture of the malformation, its venous drainage, associated or additional vascular lesions, the status of the collateral circulation and the venous drainage of the normal brain.
The information obtained by the angiographic investigation will play a key role in deciding the need for treatment. The latter will be based on the demonstration of evidence of weakness in the angioarchitecture, which may point to a potential instability. This information is then analyzed in conjunction with other factors such as the age of the patient and the location of the lesion.
The presence of an associated arterial aneurysm or pseudoaneurysm on the feeding pedicle, or in the nidus, venous thrombosis, outflow restriction, venous hyperpressure, venous pouches or dilatations, will all be factors favoring active intervention. But when the risk of total elimination of the malformation (by embolization, microsurgery, or combination of therapies), is prohibitive, then a different management strategy will need to be considered such as partial targeted embolization.
Patient Education and Follow-Up
An important part of the management of incidentally discovered BAVMs is to educate the patient. It is important to provide them with information regarding the natural history as it may apply to their particular situation, as well as the treatment options and associated risks that are known to exist in the local treatment environment. If no significant weaknesses are demonstrated in the angioarchitecture then a treatment strategy can be proposed to not treat the patient at this time, and to reassure the patient that he is expected to lead a normal productive life without restrictions. Yet the evolution is not linear and biological events may produce unexpected changes which may remain for a long time infra clinical. Follow up is therefore crucial in all the patients including of those for which a decision not to treat was chosen. Follow up is usually clinical and with imaging (MRI), but if clinical or imaging changes are noted then repeat angiography may be indicated.
This excerpt is adapted from: Lasjaunias, P., Berenstein, A. (et al.): Surgical Neuroangiography. Heidelberg: Springer-Verlag, Vol. 2, Ch. 10, 2004. Reprinted with the permission of the publisher.
Disclaimer: This article is for informational purposes and should not be considered a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any question you may have regarding a medical condition.
Pierre Lasjaunias, M.D., Ph.D., Former Chef de Service de Neuroradiologie Vasculaire Diagnotique et Therapeutique at Centre Hospitalier, Universitaire de Bicetre in France. Karel G. ter Brugge, M.D., FRCPC is head of the Division of Neuroradiology at Toronto Western Hospital in Ontario, Canada. Alejandro Berenstein, M.D., is the director of Beth Israel's Hyman-Newman Institute for Neurology and Neurosurgery (INN) at Roosevelt Hospital in New York City.
This article is provided by the Center for Endovascular Surgery, a division of Beth Israel's Hyman-Newman Institute for Neurology and Neurosurgery (INN). The Center is a world leader in using minimally invasive techniques to treat vascular disorders throughout the body, including brain AVMs. To learn more please visit: www.vascularcarenyc.com.
The arm that won't straighten. The hand that won't open. The brain that keeps forgetting his left from his right.
Walking? Scott Conley labors with that, too, almost as if he must demand his left leg to move against its will with each step.
This starts with the Dallastown High swimmer who still holds records from all those years ago. The 30-something who keeps overcoming the kinds of things most people cannot imagine.
It starts with him.
But it turns out to be so much more.
Mostly, this is a love story. A tale of two people.
To survive, Conley needed the kind of overwhelming support he found in a woman who
But she couldn't go.
And now, almost a decade later, they're both still fighting.
"She's the reason why I'm still here," Conley said. "She saved my life.
"She's always saving my life."
There was a time when swimming meant everything.
Conley learned the sport to ease his severe asthma. The 1989 Dallastown graduate became so good that he broke every individual school record and earned a scholarship to the University of Arizona. The college freshman even made it to the NCAA Championships.
Something, though, suddenly meant even more.
That came after his older brother introduced him to Kim Shorter, a York College student at the time. Five years later they bought a house in northern Virginia, got engaged and were living a fast, fun life.
Conley was traveling the country with his medical software development job, finding time to lift weights and play tennis and run four or five miles at a time. He regularly swam laps in hotel pools. And he loved restoring his 1974 BMW, the one with the jaw-dropping midnight blue paint job and fancy exhaust - and no heat,
Shorter worked a big-money sales job and dragged him to live theater. And they both loved the funky restaurants and walking tours of Old Town Alexandria.
Then came Dec. 23, 1998.
Conley went to bed that night with a bad headache after spending the day moving into their new home. Forty-five minutes later he woke up screaming, his head pounding as if it was about to explode.
He couldn't even feel the pain medicine Shorter had just placed in his left hand.
He tried to stand up and fell against a window, hit the floor and began vomiting.
He was rushed to a hospital, then to another, then to a third. He had suffered a massive brain aneurysm.
Within hours - on Christmas Eve - the unthinkable came spilling out of a doctor's mouth: The 27-year-old man Shorter planned to marry had a 10-percent chance of living.
Ten percent.
She collapsed and sobbed in a hospital hallway. Her sister, mother and brother-in-law helped her up and she quickly collected herself, determined to never break down like that again.
She knew that wouldn't help any of them get through what waited ahead.
There were four brain surgeries in two weeks.
Before one of them - on New Year's Eve - doctors said they were losing him again. And Conley probably would have died right then if not for Shorter, who had alerted nurses to the signs of another brain bleed no else had noticed.
It
Soon enough, a neuro team rushed him off to surgery.
During yet another surgery, doctors removed a large chunk of his skull and put it on ice to give his damaged, swelling brain a chance to expand.
Even after all of that, the sickness and suffering still came in waves.
Meningitis. Pneumonia. Peritonitis (inflammation of the tissue that lines the stomach).
He was in a coma for nearly six months.
It was during that time that he could communicate only by moving his right thumb, wiggling it to say, 'Yes,' hiding it under his index finger to mean, 'No.'
Doctors told Shorter that even if Conley somehow pulled through, he would probably live the rest of his life in a nursing home. He would be lucky to roll himself over in bed to help others change his diaper.
But Shorter kept pushing.
She put her job on hold and lived for two months in the hospital waiting room, sleeping on couches and floors, spending 12 hours each day by his side. She planted herself in the ICU and studied his monitors, learning what every line and beep meant.
She dedicated herself to detailing his progress - how long he was sitting up in bed, how much he was chewing, how often he was opening his eyes - to keep insurance companies off their backs.
Sometimes people wondered why she ever stayed. She tells them, simply enough, that it was about love and commitment.
"If this had happened to me he would have stayed here for me," she said.
Others still marvel.
"Kim's an amazing person," said Dr. Andrew McCarthy, Conley's neurologist at the National Rehabilitation Hospital in Washington, D.C. "So many times I see this happen, where the other person sticks around for a little bit and not much longer.
"What makes this so special is the relationship between Scott and Kim. We've gotten a lot of people better . . . but we've never had a patient get married like this."
In all, Conley was hospitalized for a year. His muscles spasmed so severely that he couldn't straighten his back or arms or legs - groaning in pain most every hour of the day and night. The left side of his body was nearly useless.
"He was in such pain during therapy that he would just yell and scream so much they'd have to shut his door to keep from bothering the other patients," Shorter said.
Even when he finally did come home, he lived in a hospital bed in the couple's living room. He could only eat thickened liquids for another year as his body slowly repaired.
He endured at least 16 surgeries through it all, took as many as nine medications at once.
He needed help to do just about anything.
So, of course, it was Shorter who rushed into the room to perform the Heimlich maneuver when he was finally able to eat solid food and was choking.
He took his first steps on his own 18 months after the aneurysm - and even then had to wear a helmet to protect against falls.
To think how far he has come . . .
Now, Conley takes care of himself during the day in their Manchester Township home off of Greenbriar Road while Shorter works full-time again. He walks staircases slowly, but at least he walks. His lack of short-term memory still frustrates him, but he's improving through daily computer work with cognitive rehabilitation software.
It took him three years to walk well enough to go to a store. It took him more than eight years to regain the strength and balance to get off the floor by himself.
His humor and persistence and sometimes even his anger still drive him, probably even harder than during his swimming days. He seems more open now with his thoughts and words, his quick wit often cracking up a room of friends.
"His case taught me so much," said Amy Georgeadis, a senior speech/language pathologist at the National Rehabilitation Hospital. "You learn in (medical) school that there are cutoffs for recovery, that pretty much how you are after a year or two is how you're going to be.
"Scott proved that wrong over and over again."
And though he still struggles to recapture his former life, Shorter is always there to protect and push and critique.
Always there to love.
The couple married in November 2005.
"She's been Scott's rock," said Iva Jean Conley, Scott's mother. "He is where he is today because of her, because of her strength, because of what she gave to him."
Mostly, Conley is a happy soul, fortunate just to have the chance to keep recovering.
He wants to go back to work some day.
He wants to run again.
He feels blessed to have Shorter.
"I'm here. I'm happy to be alive. I'm just happy she's here. She'll put up with me. She has enough stuff on her plate without having to do this or that for me. Men would kill to have a wife like her."
Shorter shrugs off such compliments, which come quite frequently.
If she is pressed on the matter, tears begin to form.
She pauses for a few moments.
"He doesn't have to thank me," she said, her voice cracking.
But he does. And they push on from one day to the next, the next almost always just a little better.
Their lives and goals intertwined in ways most couples cannot imagine.
Their love story still growing.
fbodani@ydr.com; 771-2104
It was a tough question.
But I had to ask Kim Shorter why she stayed with her fiancee, who had suffered a major brain aneurysm and was in a coma for six months and recovering for years after.
She eventually married Scott Conley, the former Dallastown High swimming star.
And when I first asked her, she talked about staying by him because of love and commitment and because he'd do the same for her.
Then, a few months after our initial interview, she e-mailed another response. Here is an excerpt:
"From time to time, I have been thinking about the question you asked me -- 'Why did I stay with Scott through all this?' Wondering if there is some deep answer or something profound that I should have said. . . . I can tell you two things:
"1.) I love him, so of course, wanted the best outcome possible for him after he got sick -- not unlike anyone in a similar situation . . . and . . . 2.) I knew somehow that I was the best person to help him (recover). I am strong enough (mentally and otherwise) to take care of both of us during the very worst times and knew he needed my resourcefulness for the long haul. I can be a giant pain in the ass to people until I get the right answers for him.
"In your short experience with Scott, I am sure you have seen that he is driven enough for four people; he never lost his drive even with frontal lobe damage. I think it is in every fiber of him.
"So, together -- a disciplined athlete who can manage a ton of pain and a type-A perfectionist -- I'd like to think we have been a formidable team against this thing. Helping him in his battle back from this is the accomplishment I am most proud of in my life."
-- FRANK BODANI
