yahoo

Showing posts with label malformation. Show all posts
Showing posts with label malformation. Show all posts

Monday, September 29, 2008

A couple AVM news stuff.

‘I can’t wait to get back to work’

8:50am Monday 29th September 2008

comment Comments (0) Have your say »

By Hayley Korn »

THREE years after her fight to save her husband’s life, a Kings Langley woman has spoken frankly of her battle to stay strong and keep her family together.

Julia Nash, of Water Lane, has been through a rollercoaster ride of emotions since her husband Pete was first diagnosed with a large Arteriovenous Malformation (AVM), or tangle of abnormal blood vessels in his brain in 2004.

Pete, a father of three boys, had been suffering with epilepsy, loss of memory and headaches and was left unable to work, drive or do any of the sports he loved.

According to Pete, if left alone, the AVM could have burst at any time, but West Hertfordshire Primary Care Trust turned down the funding to do the operation that would remove the AVM, because it considered the procedure to be too risky.

The whole village and wider community began helping to raise the £70,000 to fund the operation that would eventually save Pete’s life.

But the force behind the effort was Pete’s wife, Julia.

She fought with the Government to get laws changed, and the case ended up being discussed in the House of Lords.

Julia, 43, said: “Now, although Pete is thankfully almost cured, we are left in a complete financial mess, and whereas before I did not really think about it, I was running around to hospital appointments and focusing on Pete, now, we are hanging on to our house for dear life.

“Coping financially is our biggest strain.”

Julia, whose art career has recently taken off with exhibitions around Watford, has started work on a new book, due to be published in December.

Julia said: “When the Sky documentary came out it was 45 minutes long.

“There is so much people were not able to see from watching the documentary because there was not the airtime to show it.

“But in my book I give a frank account of how Pete’s illness and the fight with the Government affected us, how it almost destroyed us as a family and how I nearly had a breakdown.”

Years later, Pete, 40, has just been given his driving licence back and can start working again.

He said: “I am so looking forward to starting work again, it is nerve-wracking after three years but I cannot wait.

“I am also really excited about running the Abbots Langley Tough Ten and should get round much quicker this year.”

Julia said that last year, she ran hand-in-hand with Pete during the Tough Ten, the event that raised a considerable amount of money for his cause, Pete’s Fund.

But this year, she said, she is looking forward to seeing him run off ahead of her.

The couple are looking for businesses for sponsorship and are hoping for more runners to join them.

Julia, who is now helping other AVM sufferers and their families, through her Facebook page, added: “It keeps me going.

“There have been many times during these three years when I have felt like running away, but then I kept saying to myself, come on Julia, you are a strong girl, but sometimes you get to the point where you have had enough of fighting and trying to keep hold of what is rightfully yours.

“Other couples may have split up but we have stayed strong and are lucky we had a close family around us when things got very bad.”

The Abbots Langley Tough Ten is on Sunday, October 5. For more information telephone race secretary Pat Waterton on 01923 263840.


from...

-------------------------

The Aneurysm and AVM Foundation and
Dakota Lane Johnston

We're less than a month away from the chili cook-off. And I have to tell you that I'm extremely excited - I think we're going to have a big turn out.

Dakota will be on everyone's mind this day. We all know that he was taken too soon but he will always be with us.

If you would like to make a donation in Dakota's name to The Aneurysm and AVM Foundation, please click here. There will also be an opportunity on the day of the cook-off to make a contribution. This is such a wonderful way for us to honor Dakota and to contribute to the continued research of aneurysm and AVM (Arterio-Venous Malformation).

We look forward to seeing you there.

that one is from here

these are from Amazon'


Monday, September 22, 2008

Gene Is Likely Cause Of Stroke-inducing Vascular Malformations

ScienceDaily (Sep. 5, 2008) — UCSF scientists have discovered that a gene controlling whether blood vessels differentiate into arteries or veins during embryonic development is linked to a vascular disorder in the brain that causes stroke.

The UCSF studies were done in mice, and the new findings are the first to provide information on both the progression and regression of this particular brain disorder, known as BAVM, and to provide molecular clues into the disease, which is not well-understood and chiefly affects young people.

BAVM, for brain arteriovenous malformation, is a vascular disorder causing arteries and veins to be directly connected, rather than through capillaries. This direct connection produces enlarged, tangled masses of vessels that are prone to hemorrhagic rupture, bleeding and stroke. Because they develop most often in growing tissues, BAVMs are responsible for half of the hemorrhagic strokes in children.

Study findings were published in a recent issue (Aug. 5, 2008) of the “Proceedings of the National Academy of Sciences.”

The UCSF team identified the gene, known as Notch, as a potential cause of BAVMs because of its role in directing embryonic blood vessel formation. Using genetic tools, the team “turned on” a constantly active Notch gene in endothelial brain cells, which are the cells lining blood vessels in the brain, and found that BAVMs were induced. When researchers turned the gene off, the mice exhibited full recovery from the disease’s progression.

“This was exciting. The activated Notch gene caused BAVM in all of the mice, making it an unprecedented, potent molecular lesion in the induction of the pathology,” said Rong Wang, PhD, senior author on the study, associate professor and director of the Laboratory for Accelerated Vascular Research and Mildred V. Strouss Endowed Chair in Vascular Surgery at UCSF. “Furthermore, we found that repression of the gene in already-ill mice led to their recovery.”

Approximately one million people worldwide suffer from BAVMs, though very little is known about the molecular mechanisms that cause them. Results from an ongoing clinical trial funded by the National Institutes of Health on the effectiveness of brain surgery, the only treatment option for the disease, questions whether the risks associated with surgery outweigh the risk of “waiting for a rupture,” the UCSFresearchers say.

“Our study offers hope for future treatments because even the effects of stroke such as paralysis and ataxia, or loss of muscle coordination, were reversed once we turned off Notch,” said Patrick A. Murphy, lead author on the paper and a graduate student from the UCSF Biomedical Science Program, working with Wang. “This pathway has not yet been implicated in human disease, so these findings prompted our ongoing research into Notch signaling and allow us to examine the cellular and molecular mechanisms of BAVM.”

Knowledge gained about development of BAVM may also shed light on the process of blood vessel disease in other organs like the lung and liver, according to the UCSF team. "In the future, we may be able to inhibit or even reverse the disease process," said Tyson Kim, co-author on the paper and a bioengineering graduate student from the UCSF MD/PhD combined program, working with Wang.

Based on the study findings, the UCSF team now considers Notch a strong candidate as a key regulator of human BAVM and is undertaking additional research to find the disease’s cause. In addition to using the mouse model to study disease progression and regression, Wang and colleagues also are studying the gene’s role in human AVMs by examining levels of Notch signaling pathway molecules in surgical tissue samples.

“Although more work needs to be done to determine whether the research can be applied to clinical practice and whether up-regulation of Notch causes BAVM and stroke in humans, identifying the role of this pathway offers hope for developing treatments for this and other related diseases,” Wang said.

The research was funded by the Foundation for Accelerated Vascular Research, American Heart Association, estate of Mildred V. Strouss, Campini Foundation, and NIH.

Additional co-authors were Michael T. Y. Lam, Xiaoqing Wu, Shant M. Vartanian, Andrew W. Bollen, and Timothy R. Carlson of UCSF’s Pacific Vascular Research Laboratory.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.


Adapted from materials provided by University of California - San Francisco.

--------------------------------

Hay ya'll well it looks like they may have a culprit!
That will give people a chance to jump on the treatment wagon before they burst!
Of course it is still years before it means anything, but it proves that our children have something that will not take them down as we have.

In further news.... ah who am I kidding... there is no other news!



Sunday, September 07, 2008

AVM News...

First...
3D models take the guesswork out of brain surgery

OK, let’s do it,” says a tall man in pale green surgical scrubs. “Lights please.” As the lights fade, Stefan Brew stands silhouetted by the glow from a bank of X-ray monitors. In front of him a child’s hair peeps from under a blue drape that gently rises and falls as the young patient breathes. …

James, the 8-year-old patient, suffered a stroke in February and required emergency surgery to drain a brain haemorrhage. Then last month, at London’s Great Ormond Street Hospital for Children, Brew’s team found the cause: James had a dangerous arteriovenous malformation (AVM), an abnormal cluster of potentially leaky connections between veins and arteries. During the procedure described above – called an embolisation – Brew sealed off the AVM by injecting a hard-setting plastic liquid through a catheter. …

Around 1 in 10 patients suffer haemorrhages as a result of embolisation procedures.

“At the moment we do AVMs more or less blind,” says Brew, an interventional neuroradiologist at the [UCL Partners hospital] National Hospital for Neurology and Neurosurgery in London. “We eliminate as much of it as we can, but it’s basically a blunderbuss approach.”

Now that promises to change. A new imaging system aims to give surgeons a detailed, near real-time picture of the vasculature – and its abnormalities – and so remove much of the guesswork.

Called “Grid-enabled neurosurgical imaging simulation”, or Genius, the system fires off brain scans to a network of supercomputers. These then use their collective processing might to generate an accurate 3D model of the unique blood flow patterns in a patient’s brain, showing the surgeon visual representations of critical parameters such as blood pressure and flow rate. …

The imaging side of Genius is being made possible by a brain scanning technique called rotational 3D angiography. This builds up a 3D image of the vasculature from large numbers of 2D X-ray slices shot from different angles around a 180-degree arc. …

However, the shape of the blood vessels does not reveal the key pressures and flow velocities that may indicate where ruptures are likely. So Marco Mazzeo and Peter Coveney [UCL Chemistry] have written software that calculates these critical parameters, as well as stresses on artery and vein walls, based on a handful of pressure measurements made by the surgeon using a special catheter. …

Surgeons working on a patient also need such images to be bang up to date. …

That means processing vast amounts of data to constantly update the model – around a trillion calculations per second.

To do this, Genius will access 20 supercomputers across the US’s TeraGrid and the UK’s National Grid Service, which offer a dedicated processing infrastructure for scientists. …

“These procedures involve life and death decision-making,” says Coveney. “The goal is to enhance the ability of clinicians to make these decisions through information technology and high-performance computing.” …

It’s part of a wider effort to model organs or body systems under the umbrella of the Virtual Physiological Human (VPH) project. …
FROM...
------------------------------------------------------------------
Second....

Oh no! Not again!

Hi Family & Friends!

Let me begin w/something fun! I've been taking Saba in to work w/me all this week! Well, I had taken some time off, so it was really only Wed.-Friday! She makes me feel better (my therapy bear) so I like taking her to work! Anyway, Grace, one of my co-workers, has a monkey from the Build a Bear collection and she had been telling me she would bring him in for a play date w/Saba! So, Friday, Ryan the monkey came in, so he and Saba spent the day together! (see photo) Grace would tell me that if Ryan didn't behave to let her know! Her fiance Raul is one of the courts baliffs, so when I saw him in the hall, he asked how Ryan was doing? I told him Ryan was in love! Right before the end of the day, I picked Ryan up and hugged him and she asked if I would like to take him for the weekend! "Oh yes"! I was so excited that she trusted me to take care of her furry kid for the weekend! Grace and her fiance Raul had put Ryan together and dressed him so cute in some khaki shorts and polo shirt! He's wearing an Astros baseball cap, but no shoes! That's ok - Saba lent him a pair of her brown sandals!

Got up this morning w/every intention of running some errands and meeting mom for lunch. As I mentioned before, I have been hacking w/the crud that is going around. I was ironing the shorts and t-shirt I would wear on my outing, and I could just hear the wheezing in my chest. I told Mark I just had to cough that gross phlegm out and I wanted to do that while I was @ home - just in case I had a bleed. So, I hacked and was trying to get that darned crud out and I could barely breathe, so I really coughed to get it out and sure enough - I started gushing blood! In seconds the front of my tank top was covered in blood and it ran down my arm and down my body! It's as if someone threw a bucket of blood @ me - I headed to the kitchen sink w/Mark following close behind! I immediately grabbed a mirror and started taking the dressing off as Mark was grabbing a paper towel and wetting it so I would be able to put it over the area that was bleeding and apply pressure! We can't get this done fast enough it seems! Mark helped me take that wet tank top off as I kept holding pressure on the wound site. Mark tossed the tank top in the washer and soaked it. I checked my wound area a couple times, until we found it had finally stopped bleeding. Got myself cleaned up and we headed to the area where I sit and Mark redressed the wound area. So that took a chunk of time out of our morning.
Meanwhile, Mark gets a call from his supervisor @ work telling him there was an emergency and he needed to come in! Apparently the Memorial Colliseum had been broken into and since it's City property - Mark needed to go in and take care of the problem!

Mom called shortly afterward saying she was ready to run errands and go to lunch!
I met her @ JoAnns as she is buying yarn to crochet the boys each a throw! After that, we headed to Red Lobster and it was super crowded! Mom called Markie Poo Hoo to see if he wanted to join us, but got his voicemail and mom left a message. Before hanging up, she added, "if you join us for lunch, I'll buy you crab legs"! Is that a bribe or what? It worked! Markie called a few minutes later and asked whether he had time for a shower before joining us. We had a 25 minute wait, so no problemo! We were so glad Markie could join us - he is hilarious and wonderful company! He had us laughing - so quick w/the wit!

During our lunch, a couple of the wait staff came over to compliment the furry kids that were sitting on booster seats next to me! As we enjoyed our lunch, we started to hear singing coming from a nearby table full of ladies - it was the Sweet Adelines! It was so cool and they got a big round of applause from everyone in the restaurant! They were celebrating a birthday from someone in their group!

Went to moms house for a bit, Vicente was heading out to his daughter Margarets house, so mom and I had time to visit. I went over some computer stuff w/mom and not long after, Vicente was home again. I was missing Mark and decided to head home myself, so here I am!

When I write about the bleeds - it's mainly to give y'all a chance to know something about the life we are living right now. I feel bad that we don't always have time to visit w/friends, or always answer e-mails, but these bleeds take a lot out of us sometimes! We've learned how to handle these situations, but it also interrupts what might have been a typical day. I just live for the weekend when I can relax @ home w/my wonderful husband and feel "safe" knowing if anything comes up w/my avm, I can deal w/it so much easier than when something happens @ work! Ok, I know I'm selfish, because when I'm home, I love, love, love to read and that's what takes up time too! I think I mentioned that the other day I called Rhonda Sharp (PA in CO) and asked whether we could cut back on the Neurontin - the med. that was making me so drowsy! I was staggering 4 of those capsules a day, so Rhonda told me to go back to taking 2 a day for the next couple of weeks. I'm telling you this because now that I'm not so darned drowsy, I've had a chance to complete New Moon and just started reading Eclipse from the Stephenie Meyer Twilight Series! (see photo)! It's reading and relaxing that help me deal w/all the avm crap (excuse my french)! Of course I couldn't do any of this w/out the most amazing husband in the world! Mark patiently helps clean me up, cleans the wound area and redresses it better than any wound care therapist ever could! He never complains, just gives me lots of hugs and reassurance! He took the photos of Saba and Ryan and put it on the computer so I could include it in my blog! I am really blessed to have so many prayers and friends and family that care - Thank You so much!

Please include my new e-mail buddy Marijn from Holland. He is going through a lot w/his avm and will be having surgery soon. Don't want to disclose much since I don't have his permission, but prayers would be so much appreciated!

XXOO's!

Cyndi

P.S. I want to thank my Aunts - Josie Sanchez and Sister J. (and my sister Celia) for all signing Shalons guestbook on her website! Thank you, it means a lot to her and to myself as well!
---------------------------------------------------
That's it...
Not too bad...
I have a request... Rod I need your email...and blog info.
Thanks,
R



Thursday, September 04, 2008

Johnson works for third term ... AVM News

Johnson works for third term, continued recovery


The campaign trail isn’t any longer than it used to be for Tim Johnson. But it’s a slower, more difficult journey as the South Dakota Democrat seeks his third term in the U.S. Senate and works -- with slurred speech and halting, heavy steps -- to overcome impairments left from a cerebral hemorrhage almost 21 months ago.

Johnson’s recovery from that life-threatening brain injury is a personal story of heroics and exceeded expectations. His doctors have expressed amazement at his progress. His wife, Barbara, says she is more likely than her husband to tire of the tough campaign schedule.

“There have been days when I’ve been exhausted, and he just keeps going,” she said. “I don’t know how he does it.”

The 61-year-old veteran of almost 22 years in Congress hasn’t missed a vote since his much-celebrated – among Democratic and Republican colleagues alike -- return to the Senate on Sept. 5, 2007.

And he throws a bigger policy punch with his growing seniority and committee assignments -- particularly his seat on the cash cow called the Senate Appropriations Committee – as well as his sympathetic, respected place in the Democratic majority.

But he’s not the man he was, at least not in speech and mobility. That is clear whenever Johnson makes a public appearance, as he did last week with his first stop at the Rapid City Journal since he fell ill and required emergency brain surgery in December of 2006.

It was a much different senator who struggled stiffly out of the passenger’s seat of an SUV and, with the help of a staffer, methodically shuffled in through an alley door held open by a Journal employee.

From there, Johnson made a 35-foot journey from the alley through a single-stall garage and small kitchen to the newspaper’s main conference room. And it was indeed a journey. A 10-second stroll for others, it required almost five minutes for the senator to get from alley to chair, as he leaned hard on the cane in his left hand, led with the left foot and half raised, half dragged his right leg in short steps toward the conference room door.

“Speed demon,” Johnson said softly, keeping his head down to focus on the onerous movements below.

His limp right arm hung at his side, the hand in a half fist as the senator worked his way, with staff always close by, to a chair at the conference room table.

That’s how it goes for South Dakota’s senior U.S. senator every day, step by step, in a recovery that is 21 months old and has years to go.

“It is very frustrating, and it’s difficult,” Johnson said during the interview. “But I am improving all the time. And, sometime, I will get there.”

By “there” he means back to something close to 100 percent of what he was before a collection of malformed vessels in his brain burst, jeopardizing his life and changing his world forever. He’s clearly not “there” in speech or movement on his right side. But he maintains that he is completely back in the quality that counts most.

“I’m 100 percent in terms of my brain,I'm less so, 80 percent or so, in terms of my speech, uh, less than that in my arm and right leg, but that doesn’t matter as much,” he said. “But I am 100 percent in my mental abilities, my cognition, and I’m just, uh, less than that in my speech … my articulation, and so on.”

During his 50-minute stay at the Journal, Johnson’s speech ranged from clear to almost unintelligible, but most often was slow and slightly slurred. He paused often during and between sentences, punctuating his comments with moments of silence or the often-heard “uh.”

That's not unusual in common speech, even for people who are not recovering from brain injuries. But it seems, to people who have covered Johnson for years, more pronounced in Johnson's speech pattern now than it was before, as he works to construct sentences and enunciate them.

Johnson doctors and speech-rehabilitation specialists say the senator's speech problems are consistent with his brain injury and have nothing to do with his mental process. They also say he is fully capable of serving in the Senate and running for re-election.

Dr. John Eisold, attending physician of Congress, said by e-mail that Johnson is doing well in recovering from the hemorrhage caused by a ruptured arteriovenous malformation (AVM) in the brain. And on an unrelated health issue, tests indicate the senator is cancer free, after prostate surgery in 2004, he said.

“There are no limitations to his activity at this time,” Eisold said.

Dr. Michael Yochelson, medical director of brain injury programs at the National Rehabilitation Hospital in Washington, D.C., called Johnson’s recovery from the AVM rupture “remarkable,” and said he has shown “phenomenal improvement” in language and physical function.

“If you listen to him speak, you will notice that his speech is not as fluid or fast as it used to be,” Yochelson said by e-mail. “Occasionally you will also hear him hesitate, trying to say the right word. These are all problems with language, not cognition. His cognitive function – memory, concentration, processing – fortunately is fine. This fluctuation in speech does not indicate that he is having any difficulty with comprehension.”

Yochelson said the greatest chance of a “re-bleed” following an AVM incident is in the first year. Johnson is nine months past that.

“Sen. Johnson is in excellent health,” Yochelson said.

Johnson has reached the point where he now works just twice a month with his main speech therapist, Paul Rao of the National Rehabilitation Hospital. Rao said “Tim’s thinking and cognitive skills are remarkably robust.”

He said Johnson’s speech problems are typical with such a brain injury but in no way interfere with his ability to perform as a U.S. senator.

“Does he have the intellectual, cognitive and language, voice and speech skills to do his job?” Rao said. “The resounding answer from my perspective is ‘yes.’”

Johnson maintains that his record in the past year has proven that. He’s especially proud of his role in securing millions of dollars for continuing work on the Lewis & Clark and Mni Wiconi water projects and his growing influence on veterans' health care issues as chairman of the Appropriations Subcommittee on Military Construction and Veterans Affairs.

Johnson also worked hard on the farm bill, including work on requiring country-of-origin labeling for meat products, which has been one of his priorities for years.

The senator points to a busy travel schedule during the August congressional recess that is taking him to 19 communities for a variety of public meetings and events. He said there’s no reason he can’t finish out this term and fulfill the duties of another six-year term in the Senate, as he continues to improve in speech and movement.

There’s no doubt he wants a third term. But he’s hesitant to speculate on a fourth.

“That’s too far in the future to tell,” he said.

Some people wonder whether Johnson would even be likely to finish another six-year term, given his age and the rehabilitation challenges still ahead. Northern State University political science professor Jon Schaff questions whether Johnson will run for a fourth Senate term if he wins a third in November, or even whether he would finish a third term.

“I would not be surprised to see Johnson step down (during the third term) in order to concentrate on his health,” Schaff said. “I certainly don’t think he’ll ever run for office again.”

Jarding is predictably fervent in his disagreement on that point. Johnson intends and expects to serve out a third term if elected, Jarding said. And he said people shouldn’t rule out the possibility of an even longer stay in the Senate for Johnson.

“Tim thinks he’s in a position to do a whole lot of good for South Dakota. I think he sees himself at his peak in seniority and power,” Jarding said. “With all due respect to Jon (Schaff), Tim clearly intends to serve out the full six years and possibly beyond.”

Johnson's Republican challenger, state Rep. Joel Dykstra of Canton, said he hadn't seen enough of Johnson in person to comment on his cognition or chances of serving a full third term. That was both a statement of fact and an assertion of campaign rhetoric.

Dykstra continues to complain about Johnson's decision not to engage in campaign debates. The senator said his speech impairment might give voters a faulty impression of his abilities.Dykstra thinks that's unfair to voters.

"I understand why they would want to protect him from an all-out competitive environment," Dykstra said. "But there are still formats where the two of us could have been together to talk about issues. I think that would be valuable for voters."

Jarding said Johnson's schedule of public appearances, as well as editorial-board interviews at the Journal and Sioux Falls Argus Leader that were video taped and put online, give the public plenty of chance to see Johnson and judge his stage of recovery.

Tim and Barbara Johnson reject speculation that the senator might already have experienced his biggest gains in speech and mobility. They say Johnson’s doctors say the improvement spectrum is open-ended.

“One year isn’t it, and, uh, I can continue to improve,” Johnson said.

Barbara Johnson fully expects that to happen, to a degree that will surprise skeptics. She said her husband’s progress continues at the same slow-but-sure pace she has watched since he began rehabilitation work.

“It’s always been an inch a day. We’ve never had a day when we’ve gone two feet, or less than an inch,” she said. “It’s really, really hard when you make an inch a day to keep going. But he does.”

The Johnsons work together every night on Tim’s physical therapy. That includes stretching and pulling on his right arm and right leg. The senator is now able to lift his foot slightly when he walks and move the leg more independently, and he has begun to get some movement back in the arm.

“The arm is funny,” Barbara Johnson said. “The OTs (occupational therapists) tell me it’s the last thing to come back. But it’s also the one that’s hardest to predict. Last year he could barely move his arm. This year he can pull it down, extend it and pull it across.”

Johnson wears a remote-controlled electronic band under his knee that sends an impulse to his foot. It stimulates the muscles and helps prevent atrophy as Johnson works on his rehabilitation.

“His leg looks normal, just like the other one,” Barbara Johnson said.

Rehab specialist Paul Rao said Johnson has had one of the best recovery curves he has seen in patients with similar injuries.

“Not a little of his remarkable recovery comes form his natural intelligence, his brutally hard work, his penchant for practice and his self-deprecatory and self-demanding manner,” Rao said.

Barbara Johnson said she sees all that, along with a level of determination and patience that makes her marvel. And she is certain that it will continue.

“Honestly, we’ve been married for almost 40 years. You kind of feel like you know somebody. Then you watch him deal with this,” she said. “What I wish people could see is that every day, Tim is stronger today than he was yesterday. And he’s going to be stronger tomorrow.”

Contact Kevin Woster at 394-8413 or kevin.woster@rapidcityjournal.com.
--------------------

Speaking with Tim Johnson:

Q. What is your relationship with John McCain?

A. "I respect the senator, but his temper is awfully hot. I like the guy but, uh, he's awfully pricklish."

Q. Who are you closest to personally, Barack Obama, Hillary Clinton or John McCain?

A. "Barack Obama and Hillary Clinton are new to the Senate, and John McCain is not new. But he is a Republican. So I would have to say they're all equal."

Q. How would you compare your positions on South Dakota issues to those of your Republican challenger, state Rep. Joel Dykstra?

A. "I'm not very familiar with Mr. Dykstra, position wise. I know nothing about them."

Q. How would you describe your relationship with John Thune?

A. "I am supportive of almost everything he does in terms of South Dakota. Apart from South Dakota I differ with him frequently. But I have come to an agreement that I will not say anything negative about John and he does not say anything negative about me."

Q. Which stop in Rapid City this afternoon were you looking forward to the most -- meeting with the Journal editorial board or meeting with the Canyon Lake All-Stars?

A. "The Canyon Lake All-Stars."

-----------
I'd vote for him.

from...

Tuesday, September 02, 2008

In AVM News...

I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Seems our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! We've gotten to be pretty good @ this! When I say "we", of course I mean my husband and caregiver Mark! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM!
------------

Hi Everyone!

Well, we were are gearing up to celebrate Gregs birthday today! He wants a rhubarb pie instead of a birthday cake, so... his wife Celia and my husband Mark each took on that responsibility! Actually, Mark made 2 pies (with the crust from scratch) - a rhubarb/strawberry pie and a rhubarb/pineapple pie! While Mark had his pies in the oven, I was on the computer ... and I felt an itch right under the top of the tegaderm. (Where my wound dressing is) I scratched it and then I looked @ my finger and saw red. Uh oh, I thought it was maybe a slight bleed, so I got up to look in the bathroom mirror. Nope! The wound area was filling up w/blood. Yikes! I called out to Mark and he ran to get the wound care bag as I got to the kitchen sink! I had a hard time telling where the blood was coming from - I would have to pull off the tegaderm! Mark was waiting w/a piece of surgicel, and when I pulled the tegaderm off, a stream of blood jetted out! Yowza! After putting pressure on the area, we got surgicel on there and had it under control! Before going out to the island, we went to Walgreens to pick up some much needed prescribed ointment that Mark puts on my wound area! We then headed out to join the rest of our family!

Here is a photo of me w/the birthday boy! He and my sister make all our trips to CO possible! They very generously decided they're making sure I get the necessary help in order to beat this avm! Here I am w/Greg and Saba! See the beautiful flower arrangement? Celia got those for Greg and arranged them herself! We ended up having a great evening, having dinner, dessert and playing Farkle! Here is more of my support group - my mom and her husband Vicente! He is a big fan of mine and always reminds mom to check on Cinderella! The other photo of course is my sister Celia and her husband Greg! Celia accompanies me on these Colorado trips sometimes to give my husband Mark a break once in a while! The only good thing about this avm is I think it's brought us even closer as a family! I'm so blessed to have a family full of faith and love and lots of strength! I'm so proud to say how our family came together during this time of crisis to help me get through this! It has certainly brought my husband Mark and I even closer! We had a great marriage already, but now we've come to realize how much we deeply love each other!

...
Go see there pics... here

-------------------------------------

Don't ask me why soaps.... I don't know why.

Thursday, August 21, 2008

Goals and Objectives in the management of Brain Arteriovenous Malformations... AVM post

Goals and Objectives in the management of Brain Arteriovenous Malformations

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.





Wednesday, August 13, 2008

AVM post....

Thank you for taking the time to stop by Andrea's PrayerSpot. We hope you are blessed and encouraged!
____________

Dear Family and Friends,

Thank you for your constant and specific prayers. We have some more information after the angiogram yesterday at UCLA. First, the angiogram went well with no complications and Andrea's stay in pre and post operative was really great (thanks to Lee McAllister :))!!.

We are blessed that the AVM is still relatively shallow and "most" of the vessels terminate within the AVM. Dr. Gonzalez reported that he feels the vessels are strong and don't pose a high risk for a bleed. We are also blessed that Andrea has some treatment options before her.

So far, it doesn't look like Andrea will be a candidate to have the AVM surgically removed. There is one artery that carries blood to the portion of Andrea's brain that controls her vision. Dr. Gonzalez has preliminarily suggested that we do not operate but rather do a combination of interventions through embolization and radiation.

Embolization is the process by which the doctors put a type of "sticky glue" into some/most of the vessels within the AVM. They do this through a catheter and not open brain surgery. The radiation is also a specialized treatment, but the results and knowledge if the radiation worked will take approximately 2 years.

We will be meeting with Dr. Gonzalez again this week as well also another vascular neurosurgeon, Dr. Martin (chief of neurosurgery at UCLA), for a consult and 2nd opinion before we proceed with any interventions.

In the meantime, we appreciate your prayers for the following:

1. That we can feel confident and peace in whatever treatment option we decide.

2. Both procedures (embolization and radiation) bring about an element of risk. Please pray now that these procedures will not contribute to any damage in Andrea's mind or body.

3. This is good news for us- but also hard news to have to live with the idea that the malformation might be forever with Andrea, instead of removing it offering a complete cure. Please pray that we as a family, especially Andrea, can give God complete control and find His gift of perfect peace that passes all understanding.

We will keep you posted as intervention procedures are scheduled. Thank you so much for your your phone calls, emails, meals, all of your offerings for help and especially your prayers....

With Love,
Andrea and Jason

Proverbs 3:5-6

P.S. If you would like to contact us, please email jason at jason.petsche@cigna.com or andrea at andreapetsche@gmail.com or andrea@belairpres.org


AddThis Social Bookmark Button



Thursday, July 24, 2008

AVM from: http://forum.ih8mud.com/chit-chat-section/232454-arterio-venous-malformation-my-wifes-medical-story.html

Arterio-Venous Malformation-My Wife's medical story!
Most of the Norcal Crew knows my wife and can see that she has a malformation on the left side of her face. Other Cruiserheads may have seen her, maybe at Surf n' Turf for example, but do not know about her medical condition or story behind it.

In looking for info about her condition online, or other people that have it, we were pretty suprised of the lack thereof.

This link will take you to her new website she has started working on. She is on leave of absence right now, and this has been her new project and she is excited to share her experiences with others who have an AVM, as well as educating people about the condition. The website is still a little bit of work in progress, but it is mostly complete!

We're also curious if anyone else in the Cruiser Family has, or knows someone who is living with an AVM?

Thanks for looking.
from...


AVM Seen as Good News

Jose, my mom, and myself headed to Lexington today unsure what we would find out. Both the ER doctor and the follow-up physician made us very nervous.

One of the first things that my neurologist said was she completely disagrees with both doctors! She said she read through their reports and then looked at the actual MRI herself.

ER DOCTOR: AVM, large abnormal blood vessel, follow-up MRI and cerebral angiogram, possible radiation/surgery for AVM - blames the AVM for right sided weakness, headaches,dizziness, etc

Follow-up Physician: AVM, abnormal blood vessel, possible stroke, URGENT follow-up with cerebral angiogram.

Neurologist: AVM is small. It’s also on the right side of the brain which means it cannot be responsible for the right-side of my body. The left side of the brain is responsible for the right side of the body. So even though it’s there - it’s small and not the reason I’m having these problems. The pinched nerve could be responsible for some things BUT it’s also on the wrong side of my neck.

She said that doctors always think that test findings are worse than the reality. Because it’s out of their scope of practice the smallest things look urgent and scary to them. She said it would be the same as if she saw someone who had something non-neurological happening. She would be more anxious about it because that’s not her scope of medicine. She doesn’t like the way the ER wrote up their findings as it’s overwhelming to tell a patient they may need radiation or neurosurgery when they’re not qualified to make those judgments.

Neurologist’s Exam

Onset of Symptoms in Haiti: headache, dizziness, uncontrollable arm and leg movements, 52 blood glucose level, speech difficulty.

Symptom still present: There is still right-sided weakness, dizziness, severe headache, and mild speech delay

DIAGNOSIS:

She told me most diagnoses in her field are based off of ruling other things out. The AVM/Abnormal Blood Vessel is not important right now. It cannot be related to these symptoms. She believes that at this point in time there is no need to do a follow-up MRI or Cerebral Angiogram because the abnormal blood vessel is not that large and she believes it’s benign. YEAH!!!!!

Pinched Nerve - The MRI shows that and taking muscle relaxers is a good thing BUT it’s not responsible for all of my symptoms.

Her thoughts were a TIA (mini-stroke) seizure, or complicated migraines. However - I don’t have any risks for it being a seizure and it doesn’t fit the typical seizures that they see.

So that leaves TIA/complicated migraines. They both basically give the same symptoms that I’ve experienced. Doing more follow-up tests to figure out exactly which one it is will result in lots of money which we don’t have and no difference in real follow-up treatment.

So they want to treat the symptoms and see where it goes. I still have these horrible headaches and my head is sore to touch. The headaches are causing a lot of the dizziness and she said that the headache could even be causing the right-sided weakness and speech delay. She said even the low glucose level that I had in Haiti could have caused the extreme tremors and dizziness.

Because TIA and migraines can so closely resemble each other we may not know until I have another episode. She believes that the episode in Haiti was more than likely brought on by stress. She believes that once we treat the headache regardless of why I have it - that the speech, dizziness, and tremors will all return to normal.

I’ve been prescribed 4 different medications including steroids and was told to REST and avoid STRESS! I told her I thought I had the rest thing down and she said - -yes, but it’s important on the medication she’s prescribing that I really don’t STRESS - don’t over-think (HA) - don’t drive - don’t do any heavy lifting - and try to truly relax. The back of my neck is still really tense and so even for the muscle relaxers to work - I need to chill-out!

I told her now that I know I don’t have to have brain surgery - it will be a lot easier to relax! :) She apologized to me again for that!

I just wanted to say Thank you to Monica Reich who spent the last three days trying to call every connection she had here in Lexington. Through her efforts, she had arranged for the new MRI and angiogram to be done for free! She even met me at the neurologist’s appointment today to tell me the great news. I think she was hoping I would need one :) No - I know she wasn’t. But I am so grateful for all her work and I can’t say that I’m sad I didn’t need one! God answers prayers and I’m so happy to not have to worry about that anymore.

Thank you all for your countless emails, comments, and prayers. While the symptoms are still here - it’s so encouraging to know that the worst is over and I’m sure as I start the new medication that these symptoms will just go away or get better.

Jose told me he was afraid something would happen to me and he would be left alone. I reminded him with 5 kids he would never be alone :) I also reminded him that we have more family than any person could ever need!

You will never understand what your prayers and encouragement have done for my family.

WHATEVER I SAY IT WON’T BE ENOUGH BUT……

THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!


Sunday, July 13, 2008

I Have a Date

from...
I have a date!
I finally got a surgery date!
I check into Kaiser in Hollywood on August 11 at 6:30am, and 8am they'll be going in to fix both the AVM and the aneurysm.

if you want the graphic (and i think cool) details here they are (if you don't want them skip down to the prayer requests):

They-and by they, I mean Dr. Lei Feng, Director of Interventional Neuroradiology at Kaiser-are (is) going to go up through my femoral artery, first to the aneurysm (which has not burst, but they found while looking at the AVM that did) and put what has been described to me both as a "clip" and a "coil" (that will not go off in metal detectors-i asked) into the blood vessel. Whichever description is more accurate, I think the general idea is to stop blood flow to prevent any bursting of weak wall of that vessel. It's great that they can go in through the artery, because he showed me where it was on the plastic brain, and if they had to go through my skull, they'd have to essentially shove aside a lobe to get to it. It's like dead center. Thank the Lord I live now when they can shove little poky things and cameras in my blood vessels to do things like that.

Once the aneurysm is fixed, they are going to make a U-turn and go back to the AVM and block the 2 vessels feeding into it. It makes a lot more sense when you've seen the angiogram, but try and track with me. Again, the goal is to stop the blood flow, so they are putting this glueish stuff in there to do that. All in all it's about a 4 hour surgery.

The risks are lower because they aren't hacking through the skull and removing a chunk of tangled blood vessel (which would immediately solve the problem, but they could grab some brain tissue in the process), but there are always risks when you're poking around up there, even when your getting to the blood vessels from inside the blood vessels and not getting at them through the skull and brain tissue. Should the Embolization (this type of procedure with glue stuff thru my leg) fail, it'll do little damage, which is great. Int hat situation they will just have to try another option (probably radiation before cutting my head open-but it's a longer process).

As was pointed out in an episode of Scrubs (a great resource for the most accurate medical information (c: ), statistics vary, and there have been cancer patients who according to the stats, should have died, but lived, and appendicitis patients who should have lived, but died. I don't remember what Dr. Cox attributed that to, but I happen to know the One who not only knows what's going to happen to each patient, but the One who controls who beats the stats and who doesn't, and why. That's pretty comforting, eh.



Prayer requests:
-the time up until the surgery: The doctors cleared me to do anything except drive and be in a remote place, but I'd really like to not rebleed before the surgery, not that that is likely, but you know.
-the success of the surgery itself: The Neurologist (Dr. Freidlich) was very optimistic about it, saying I was a great candidate for this type of surgery/cure because of the nature of the AVM. Dr. Feng was, while optimistic, cautious-i'm sure because he's the one actually doing the surgery, and doesn't want to say anything that might bite him in the legal butt later. So pray that there are no complications. There are always risks when you are dealing with brains.
-post-op and recovery: my mom starts school the day after the surgery. If everything goes as planned I should be in the hospital for only 2 days so it shouldn't really be a problem, but it'd be great if she didn't have to miss any school-especially the first week.
-you can also thank God that I got a date that lets me go to camp cause i'm really excited about that!

thanks again for all the prayer and support over the last month or so, it's been a real encouragement, and I know it's why everything has gone so smoothly.

Beth

Thursday, July 10, 2008

#2, Pitt-led research gets to the heart of common problems

Pitt-led research gets to the heart of common problems

By The Tribune-Review
Tuesday, July 8, 2008

Buzz up!
StumbleUpon Toolbar


Research led by University of Pittsburgh scientists is the first to describe how two common congenital circulatory problems form, the university announced today.

The team found that a gene called unc45a plays a critical and previously unknown role in the formation of aortic arch vessels. The vessels contribute to several of the body's major arteries and often develop improperly, causing a wide range of vascular defects.

The team also found that arteriovenous malformations, or AVMs, happen when an artery fuses with a vein, diverting blood flow, and result from genetic and physiological factors. Previously doctors had believed its origins were solely genetic.

The research is published in the journal Developmental Biology. Scientists at Georgetown University Medical Center and the National Institutes of Health also participated.

"We discover AVMs in humans when something goes wrong and we can never go back and trace the shunt's development," co-author Beth Roman, assistant professor of biological sciences at Pitt, said in a news release. "Only when we fully understand the mechanisms leading to these malformations will we be able to develop better diagnostic tests and preventative treatments to pinpoint the best time to intervene."

Monday, July 07, 2008

Learning to Float

from...

Sometimes there is a little ball of fear hiding deep down inside my chest. Those wily “what-ifs” come sneaking around like jackals sniffing a foul feast. I have to will myself to turn away, stop my ears up, and run in the opposite direction. “Resist and FLEE.”

Projections into the future are forbidden territory. There are times when the only thing you can do is the right thing. Living in the moment....one day at a time....just floating. That is how it must be now. Attempting to live any other way produces unbearable stress. There is a peace that comes from the freedom of fewer choices. Too many choices have always done me in. The grocery store is a nightmare; Walmart is the 6th circle of Hell. But now simplicity is not a choice, it is the only possible condition of existence. A rhythmic pattern must be established within the chaos of uncertainties.

And so I try to establish my little rituals of comfort and familiarity, attempting to redefine ‘home.’ But I am reminded that “the Son of Man had no place to lay his head.”

Just days after the AVM rupture, Sherry, one of Katherine’s agents, send me a copy of the print from one of her modeling jobs. The shoot was for a book cover. A confident-looking blonde with cool shades is at the wheel of a shiny convertible, hair blowing in the wind, a big black lab hanging over her shoulder. The slight grin on her face indicates that she is a woman who knows exactly where she’s going as she cruises out into a world of beautiful blue skies. The name of the book is Learning to Float (a woman, a dog, and just enough men.) Boy did we get a laugh out of that one...Katherine is not a dog person, and has always thought one man was plenty. Although it might seem a little strange to have received something funny like that at the time I did, I thought it was perfect on many levels. Katherine will be that confident, smiling woman again one day. She is on a journey. Blue skies will return. And we will all learn to float.

A year and a half ago, I had a unique experience which I am only now beginning to understand. It was a time of intense pain. I was praying with my former pastor’s wife, when we both began having the same visualization. It had started with me. In my mind, I saw an old ship floundering in a storm, being ripped apart as it crashed on the rocks. The words “Abandon the ship” came to me. That scared me. I didn’t want to jump into the dark, cold waters. These words were impressed upon my spirit: “Jump in. I will not let you go under. Just float. I am the living water. Immerse yourself in me.” By this time, Sandy said “Kim, I feel as if I’m floating in an ocean.” We began describing what we were sensing in prayer to each other, entering into the experience together. We both felt ourselves relinquishing control as we ceased our struggling in the sea. We just floated there in the gentle waves of God’s presence. At the same moment, we sensed the sun coming out, warm and bright, sparkling on the dancing water. Words floated down to us: “Do not be afraid. Storms and floods may come. Don’t fight and flail. Let go. Float with your face turned up towards the Sun of righteousness. There is healing in my wings. Waters that seem as if they will drown you are for your healing. Come into the healing waters.” Waves of love flowed over us and kept us safely buoyed on the surface. We were being held. We rested.

Then we both seemed to be moving. We were lovingly carried along by a strong but gentle current. A vague questioning entered my mind. These words came to my friend and me: “The waves are carrying you to far-away places, places you’ve never been before. But don’t be afraid. It is at my direction.”


God, help me really learn to float.

Friday, July 04, 2008

Thursday Update: an avm story

Thursday Update
By Jay Wolf (Katherine’s Father-in-law)

I have returned to UCLA Medical Center for the 6th time since Katherine’s brain stem stroke on April 21. She is making some wonderful progress! Her right side is strengthening. Her eyes look good. There is more movement in the left side of her face. Katherine’s awareness is leaping forward. She is using an alphabet board to spell out her responses. She is mouthing words and we are having fun reading her lips. Katherine stood upright with the help of the hydraulic lift chair and a harness for 30 minutes. She even asked her therapist to work her more because she wants to get well and go back home.

We met with Dr. Gonzalez, the neurosurgeon that God used to save Katherine’s earthly life on April 21. Dr. Gonzalez reiterated that he did his best but God has translated his efforts into an amazing miracle. Dr. Gonzalez told us about presenting Katherine’s case to a medical seminar. When the group saw the size and complexity of her arterial venous malformation (AVM) they knew a good outcome was virtually impossible. When Dr. Gonzalez told about Katherine’s current condition and progress, the group erupted in spontaneous applause. He said that in his 12 years of making this type of presentation that was a first! Dr. Gonzalez affirmed that Katherine has a long way to go but all indicators are that she will come all the way back! We concluded our meeting by praying with him and he wept openly. With great warmth we hugged and he went to his next assignment.

Treasured Prayer Warriors, keep praying for Katherine to decrease her secretions so the trach can be removed. Ask the Lord to keep re-creating, re-training, re-coordinating and re-strengthening all of the areas of deficit.

Katherine asked me, “Why has this happened?” I shared the great revelation of God’s Word that we live in a fallen world (Genesis 2-4) and satan’s activity factors heavily into the equation of suffering. I reminded her that Jesus cast out many demons and attributed illness to the devil’s destructive work (See Luke 13:10-16; John 10:10). Paul asserted that his thorn in the flesh was a “messenger from satan.” (II Corinthians 12:7) So our job is to trust the triumphant Lord Jesus to give us strength to overcome the devil’s destructive work. I explained, “Katherine your illness came from the heart of hell, not from the heart of God. Furthermore, the ultimate example of God transforming evil and suffering into a positive outcome is illustrated by the cross. God reshaped the cruel cross into a bridge to connect perishing people to God’s redeeming love and purpose.”

I told Katherine that her cross of suffering is being used by the Lord to connect countless people to God’s love and light. So our job is to keep trusting King Jesus and fighting the battle of defeating the devil’s destructive work. I encouraged, “Katherine, you are fighting a terrible battle with the devil’s destructive forces but you can do all things through Jesus who strengthens you. (Philippians 4:13) You will climb the mountain of recovery with God’s help and run a sword through the dragon’s dark heart as you overcome his evil efforts.” Katherine gave me a big “thumbs up” and a beautiful crooked smile of understanding, affirmation and resolve.

Let’s continue faithfully fighting beside her by consistently praying and fervently believing that God will keep raising her up along with lifting up a host of others as we keep moving forward and stay focused on King Jesus!

from...


Monday, June 30, 2008

16th Zurich Course on Interventional Neuroradiology

from...

Institute of Neuroradiology University Hospital of Zurich
Frauenklinikstrasse 10
CH - 809 Zurich
Phone: +41 44 255 5620 or 5600
Fax: +41 44 255 4504
Email: neuroradiologie@usz.ch

Training

Policy Field of Event: Research & Innovation

Limitation: Registration required, Entrance fee

Location of event:

University Hospital of Zurich
Frauenklinikstrasse 10,
8091 Zurich

Switzerland


infos: The 16th Zurich Course on Interventional Neuroradiology has been prepared along the established educational lines and the traditional spirit of the Zurich, Toronto and Paris-Bicêtre schools of neuroradiology. Throughout the past fifteen years the teaching faculty has been intentionally kept small, with teachers sharing similar philosophy, clinical experience and long lasting collaboration. The teaching faculty includes Professors Pierre Lasjaunias, Marco Leonardi, Karel terBrugge and Anton Valavanis. The approved educational methods of introductory and explanatory lectures, interactive video workshops for demonstration of technical details and open faculty conversations as well as the style of interactive discussion with the participants will be again used in the 16th Course. This time the Course will focus on the treatment of dural intracranial arteriovenous shunts, hypervascular neoplasms of the intracranial space, the skull base and the head and neck, brain AVM's and AV-fistulae, intracranial aneurysms, aneurysmal subarachnoid hemorrhage, preventive stroke treatment and emergency endoarterial stroke treatment. For each topic clinical manifestations, underlying neuroanatomic facts and neurobiological considerations are used to elaborate treatment strategies, understand approach selection and demonstrate in detail the application of endovascular techniques and their results. Professor Ugo Fisch, pioneer of skull base microsurgery, Professor Helmut Bertalanffy, prominent microneurosurgeon and Professor Ralf Baumgartner, dedicated stroke neurologist, are the special guest faculty and will contribute with their experience and expertise to the respective topics. Contents and structure of the Course have been conceived in such a manner, that it can be attended by beginners in the field and by experienced practitioners of endovascular interventional neuroradiology as well as by technicians, nurses and interested physicians of related disciplines.

people: Anton Valavanis, M.D. (Course Director), Professor and Chairman Institute of Neuroradiology University Hospital of Zurich; Ralf Baumgartner, M.D., Professor Department of Neurology University Hospital of Zurich; Helmut Bertalanffy, M.D., Professor and Chairman Department of Neurosurgery University Hospital of Zurich; Ugo Fisch, M.D., Professor and Chairman Emeritus Department of Otorhinolaryngology University Hospital of Zurich; Karel terBrugge, M.D., FRCPC, Professor and Head Division of Neuroradiology, University of Toronto, Toronto Western Hospital, Canada; Marco Leonardi, M.D., Professor and Director Professor and Director Ospedale Bellaria, Bologna, Italy; Pierre Lasjaunias, M.D., Ph.D., Professor and Director Service de Neuroradiologie Hôpital de Bicêtre, Paris, France.



Saturday, June 28, 2008

MOD MAGAZINE 2008

MOD MAGAZINE 2008...
BETTINA ARANETA DEL ROSARIO, MIRACLE MOM
By Venus R. Salangsang MOD Magazine (out in May 2008)

That frightful hush that is a mix of hope and despair enveloped the whole hospital corridor where family and friends had formed little groups, hanging on to each other in the dead of the night. My daughter Cara and I had rushed to Makati Medical Hospital to be with Bettina, one of her very best friends, and the daughter of Angela del Rosario, who was my friend too. She had been fighting for her life the whole evening. 8 months pregnant, on July 6, 1999, her head began throbbing painfully. She refused to take any medication, protective of the baby she was carrying. Checking her blood pressure, her mom saw it was a shocking 240/120. Her parents rushed her to the hospital, where a C section was immediately performed since fetal distress had set in. Bettina heard her new-born baby cry, then she fell into a deep coma that would last for 10 days. The doctors had to do brain surgery. Her long day’s journey into the night had began.

The Young Girl Bettina (Betu)

Bettina, at 22, had a life that had more than its share of hills and valleys. Given away at birth, an uncomely infant, she fell into the loving arms of childless Angela, who, with husband Manolo, adopted her, giving her a very prestigious name of two “old-rich” families, bringing her into their privileged life-style. I came to know her as the classmate of my daughter Cara, Betu they would call her, in that highly rated, very nice Maria Montessori Cooperative School in Pasay. Even then, as a very young girl, she was a good “manager.” I was amazed to know that she practically run the household to help her very busy Mom, making the menus, taking charge of the kitchen and the helpers. She loved horses, and had her very own which she would ride at the Manila Polo Club. I saw her and my daughter bloom into high school - fun-loving, vacation-loving students at exclusive Assumption San Lorenzo. These teenage schooldays, usual parties, friendships, and vacations abroad were the fun times. The marital problems of her parents that were escalating, and the typical sibling rivalry with younger brother who was always a pain in the neck for her were the downside of her life. Then came the life-changing situation. Still in college, she learned she was pregnant.

Pregnancy/ Single Mom

The discovery of her pregnancy could not have come at a worse time. She and her boyfriend were having difficulties in the relationship and he had just broken up with her. In the doldrums of her heartaches, her pride much hurt by the break-up, the unexpected news of her being pregnant spun her world into a downward spiral. The boyfriend was in typical denial; later, convinced, he offered marriage. But Bettina, already very much the gutsy woman, knew it was best not to enter into that commitment. She decided to be a single Mom. The pregnancy was difficult especially during the first trimester. There was bleeding, and the need for bed rest. On July 6, 1999 Luis was born, and Bettina almost died.

Near Death
The high blood pressure had caused internal bleeding in the brain. Scans showed she had a quite rare congenital condition called arterio-venous malformation or AVM which disables the correct flowing of blood to the necessary places. Surgeons operated on her to save her life, taking out one cup of brain matter. Prognosis was grim: she could die any time post-surgery. If she survived, she would be a vegetable since parts of her brain had been removed. And she would be paralyzed.
Bettina survived. Her whole right side was paralyzed. She had to stay three more months in the hospital. Luis was brought home, a beautiful healthy baby. Those three delightful months of being with her infant son were denied Bettina. When she woke up from her coma, she herself was like a new-born human being. She didn’t know basic numbers, letters, names of objects. She didn’t know how to talk. She couldn’t walk, what with her paralysis. She couldn’t even eat. Food was intubated through a hole in her throat. When finally she went home, it was in a wheelchair. Still very disabled, back home, she could barely hold her baby whom she named Luis Xavier, which means renowned fighter. She would often cry in frustration as she couldn’t be the Mom fussing over her darling baby. She was in a downstairs bedroom, made especially for her needs, and Luis was upstairs with the yaya and grandparents.

Recovery and Therapy

I would chance upon Bettina whenever I would go to Makati Medical for my own radiation treatments for breast cancer for she was there almost every other day, and the therapy rooms were on the same floor. Each time I would see her, I would be flooded with emotions of joy and pride. It was always a joy to see her so alive and well, stuttering, yes, learning to talk and yes, to walk, swinging her leg and arms mightily, with great difficulty, learning the needed balance and the rhythm from her therapy. Her leg brace was heavy; she hobbled around laden with metal, holding on to a cane. But she always greeted me with cheerful smiles and twinkling eyes; she was always so upbeat, so strong, so hopeful. She practically glows with strength, and she inspires everyone in the therapy rooms with her determination and faithfulness to her therapy. She keeps saying it is only a matter of time before she will be fully back to her old agile self. She admits though that the first two years were difficult. She had daily struggles with frustrations, self-pity, and the enormity of her disabilities. What kept her going? What made her so brave and so indomitable? Luis. Her parents. Her faith in God. And a new love.

The greatest inspiration for her recovery came from Luis. Bettina was determined to be there for her son in all ways as a healthy and active Mom. And so from the start, 1999 till today, she has never let up. This means years of long hours of therapy – physical, speech, occupational. She has literally moved forward from paralysis of half the body to almost full recovery of her movements and full feeling. She had to deal with memory losses, memory lapses. She had to re-learn everything with her left hand: writing, doing things. Determined to take care of infant Luis, she would change his diaper painstakingly with one hand, dress him up, prepare his formula, feed him, put him to sleep beside her. With therapy, her garbled and inverted speech improved, and she is back from being barely understood to her old expressive self. So much so that she even run for Kagawad in Magallanes Village, Makati last barangay elections! Moreover, the equestrian in her has survived this crisis. She has revived her old loves of riding and cooking for she believes in doing what make her happy. In 2004, she went to Detroit, Michigan to join a Riding for the Disabled International Competition and in 2005 she joined the competition again, this time in Hongkong. Very much at home in the kitchen, she resumed accepting food orders. She taught basic cooking in a Summer Arts Program in Magallanes Village. She joined a cooking contest and her recipe was selected for the December 2007 issue of Yummy Magazine. She looks forward to running her own restaurant. Valiant, outgoing Bettina is engaged in a variety of activities. She shares herself , doing more than many others who are NOT disabled. She believes this is both right and therapeutic She has numerous volunteer projects with her barangay in Magallanes. For example, just a few weeks ago, she participated in the organization of Magallanes Village’s Recyclables Market. Her slogan all these 9 years has been “DISABILITY DOES NOT MEAN INABILITY.”

Her parents, themselves strong survivors, are great sources too of inspiration and support. Angela is one of these perpetually busy, practical, big-hearted women who can multi-task, ran the whole world, and still find time to play golf and enjoy lunches and dinners with friends and family. She totally amazes me. I have often watched her as she answers a thousand phonecalls and queries as manager of a big travel agency, this for a woman who had a double heart by-pass when she was only forty-something. As for Manolo, for the past four years he has battled stage 4 lung cancer, gone abroad for surgeries, and is on a new experimental drug that is doing wonders for him. Is it any wonder Bettina has such a big fighting spirit? It practically runs in the family! And when burdens such as these beleaguer a family, God cannot be far behind. “He will never give us what we cannot handle,” Bettina trustfully proclaims.

The Young Mom, Marvellous Bettina
Luis is one of those blessed children who have a special aura. I saw this for myself. As a toddler,he delighted me with his good manners, his vocabulary, his amazing memory( as a one year old, he remembered what he had “nicknamed” Edwin, the husband of Cara, Bettina’s friend, on an earlier visit months past ). Even as a baby, he already had this special self that palpably exuded charm, brightness, wholeness, graciousness. He even hummed himself to sleep! Such EQ! Bettina would often say, “He must have gotten all the brains I lost!” He is a “fun” person, very much a boy running around with his cars and toys. Bettina brings him to his school and to his soccer games, They cook favorites like “mushroom risotto” and concoct pizzas. They have “kwentuhan” time at bedtime, sharing all sorts of silliness. He is a very dear and sweet boy. Just a few days ago he saw his Mom crying out of her sheer frustration over the sudden departure of his trusty yaya of 6 years. He went over, patted her back and said, “Don’t worry Momma, I”ll take care of you.” And he does! He carries Bettina’s handbag when they are out, and helps her with the stairs. He is Bettina’s greatest pride and joy - so good, so affectionate, and he binds the family as only a beloved child/grandchild can.
In this life, things have a way of coming round, as we all know. Just recently,Bettina consented to have Luis meet his father for the first time. He stayed with him and his family for three days. The anxiety Bettina had over this encounter quickly disappeared, for it was a delightful and healing visit. Luis grew happy and assured upon finally meeting his Dad. And the Dad had only amazement and awe over the wonderful, outstanding, well-brought up loveable son that Luis had turned out to be.
People have said that Bettina’s recovery is a miracle, a gift from an infinite wisdom and a divine providence that keeps working in all of our lives, His presence more felt in some, more dramatic, for whatever reason or purpose. For Bettina, God’s love is there through Luis, through the person that she is and that she has made of herself, through her parents, her family, her many friends, and especially in one friend who loved her well, brief though this was. “He made me believe in myself again, “ Bettina said. What can be more empowering for a woman than to be in love and to be loved! This came at the right time for Bettina. With him Bettina must have experienced what Kahlil Gibran talks about:

"But let there be spaces in your togetherness And let the winds of the heavens dance between you.Love one another, but make not a bond of love. Let it rather be a moving sea between the shores of your souls.Sing and dance together and be joyous, but let each one of you be alone,Even as the strings of a lute are alone though they quiver with the same music.Stand together yet not too near together:For the pillars of the temple stand apart.And the oak tree and the cypress grow not in each others' shadow."
Keep growing tall and strong, Bettina! This country needs miracles like you.
----------------

Well that is a truly hear-warming story.
Good luck!