Got one... but first...

Hi guys and Gals,
The comp I am typing from... it dose not have spell check... and it will not upload pics.
So on the post I'm gona upload thar are a number of great pic... so do me a favor... go pay her a visit.
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Dr. Zane
Saturday, February 28, 2009
Hi Everyone!I've been wanting to blog - Mark is in the garage and I'm trying to watch some of the ELLEN shows I have on the dvr and putting away some of Saba's clothes that are all over the place when I change her in a rush - all the while making sure Hanz doesn't get in to trouble! What kind of trouble? Oh, his favorite - going into our bedroom and walking off w/some of my socks and Crocs! He's already had his bath today, as he will be going w/us to Rockport on Sunday to see Uncle Jim and Aunt Shelley! Hanz will be staying to visit w/his cousins Ripley, Emee, Betsy and Katy while we are in CO! We won't leave him out there until Tuesday night, but we want to make sure and get him acquainted first! It's breaking my heart to think of leaving my baby for several days, but he'll probably have a blast out there! Jim and Shelley live on a big piece of property out in the country and their friends Linda and Buddy also have pets! They have a yorkie named Hockey and all of them are dog lovers, so Hanz will be very well taken care of! Sniff, sniff, waaaah!Ok! Back to the reason I'm blogging! Went to see Dr. Zane on Thursday, and Mark came with me - I've been wanting him to see how awesome Dr. Zane really is and what excellent work he does! I'm posting lots of photos of our office visit, so get ready for that! Dr. Zane is so personable! He saw I was reading the book "The Kite Runner" and said he had read and enjoyed it as well! Also browsed through the photos I had with me of our little angel Hanz, since Dr. Zane's family has several Brussels of their own! Isn't that awesome? The Brussels he and his wife have looks like such a little princess!So! The tech told Mark she was happy to meet him, as I talk about him all the time! Dr. Zane took a look inside my ear and was happy w/the healing process since the last time I had seen him! Still had to get some of the scabbing and old, dead tissue out of there - the look on my face in one photo tells you how painful that was! Mark took photos of the screen we were seeing everything Dr. Zane was doing on!Dr. Zane has these tools to scrape the scab and tissue and to snip it if he doesn't want to pull any further! At one point of course, there had to be bleeding! Right away, Dr. Zane gets a Q-tip and puts pressure on the bleeding area! He also puts a cotton ball in my ear, so that the blood won't go inside my ear. He checks to see if it's still bleeding, and of course it is, so he gets another Q-tip and puts some more pressure on there. Can you say, "PAIN"?! Ugh! This is no fun at all! At one point when he was pulling on a scab I had to yell out, "OUCH"! Seems like I was holding my breath the entire time Dr. Zane was debriding my inner ear! Dr. Zane cauterized the area where I was bleeding from - yikes! That burned, whew! I just have to say how impressed I have been with Dr. Zane! He is in complete control of the situation and my having an avm and a bleed have not been a problem @ all for him! His confidence puts my mind @ ease, knowing that he is doing as much as he can to make sure I heal in the best possible way! I wanted Mark to go with me, as it's kind of hard to explain what all I go through during one of my office visits with Dr. Zane! I wanted to especially share this with all of you - this is why your prayers help me so much! This is not easy @ all! There is so much discomfort going on with my ear - it drains, it's scabbed on the inside and out, and of course painful! My appt. was @ 1:00 pm and I was not pain free until about 4:30pm! Got back to work by 2:00 pm and had a rough afternoon! My co-worker Kathy left for the day as soon as I returned, and I had ten defendants show up that I had to tend to! I was just so anxious to call it a day come 5pm, so I could relax and know that it was finally the weekend! I rushed home so I could go on the walk with Mark and Hanz since my knee had felt well all day! It wasn't until I was talking to my mom @ about 6:45pm that I realized I had forgotten my pain management appt. I had @ 5:30 pm! Mom had asked how my appts. went and I gasped when I realized I had completely zoned out that doctors appt. I had @ 5:30pm! I've since rescheduled it to Tuesday afternoon - the day before we leave for Denver! I have just enough pain meds to get through until that appt.! I also have a wound care appt. the same day I go back to work after my upcoming embolization!I called Shalon a few minutes ago, as I boo booed and put one photo twice on this blog and I don't know how to remove it! Shalon is my blog creator/maintainer! I want to thank so many of you that tell me how much you enjoy reading my blog! I'm hoping to hear from Wendy soon after her embolization last week! She makes the trip from Canada to see Dr. Yakes! Her avm affects her upper lip and pallet!I am soooo ready for this avm business to be overwith! It has been very overwhelming and I do have these little break downs @ times! Our original plan had been for Celia to go with me on this next trip to Denver. Unfortunately, since her mother-in-law Pat has been in ICU in Houston the last week or so, Celia is much needed there for her husband Greg and their family. I'm very happy that Mark is going with me - especially since I am still having bleeds - I think I mentioned before that Mark handles these situations very well and that eases my stress! At least I won't be missing Mark AND Hanz - this way, I'll only be missing my furry kid while in Denver! My co-worker Kathy said to me the other day, "It's just a dog"! Excuse me? I know what she is trying to say .. but first of all, a Brussels is never "just a dog"! Secondly, he is the newest member of our family - and I mean entire family! Hanz goes with us to Grandmas - there is no way I'm leaving him home alone while we're on a family visit or occasion! Lastly, Mark and I are completely in love with Hanz and are having a blast taking him for walks and just enjoying everything about him! Ok, ok ... I know, enough gushing about the little prince!I don't think I'll blog until after our return from this upcoming embolization! Both Shalon and I will be @ Swedish @ the same time, so wish us luck! We hope to get some great photos of the two of us! Please do keep up w/Shalons website and blog - she always has interesting things to say and great photos! You can get to her site from mine! It's always great seeing her - not sure who her travel partner is this time!Thank you so much for keeping up with us and all your love and prayers!Mark & CyndiP.S. Remember I told you about the MRI I had done last Friday afternoon? Well, turns out I have a torn meniscus! Geez, when will the fun ever end?! I suppose I'll have to squeeze that in between embolizations! Plus we can't forget the physical therapy I'll have to juggle between work and wound care therapy! I'll keep you updated!
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have buy some stuff...

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.

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

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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!

AVM post....

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

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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

by Devin Rae

(Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia)

Blessings, Fear and Tragedy

My name is Jason. My wife Angie and I live with our beautiful family in Tennessee. If you have read the “Our Story” section of this blog you will see that we have five children. We are a family that is completely rooted in our faith in God. While we feel that we are extremely blessed we have also endured more pain in the past few years than should be humanly possible. Through it all we have held together. This blog will tell our story.

On Tuesday July 26th 2005 the greatest fear that my family could ever have came true. My wife Angie who was eight weeks pregnant had taken our two daughters Mary Owen (Nineteen Months Old) and Madison (Four Years Old) to a play at a friend’s home with their two daughters. Our children were all happily playing together when Mary Owen collapsed. She was not breathing or responsive to the screams of my wife. An ambulance was called and arrived on the scene within minutes. Noticing the critical nature of my daughter’s situation they rushed her to Vanderbilt Children's hospital in Nashville Tennessee.

I received a call at about 1:30 pm from the friend telling me what had happened to my baby girl. They told me that the ambulance was in route to the hospital and that I needed to get there as fast as I could. Upon my arrival at the hospital I found my wife standing beside our daughters still body. Doctors and emergency room staff were racing around in an attempt to resuscitate and save our little girl.

Initial tests suggested that there was bleeding within Mary Owens brain. Over the next several hours the doctors and staff attempted to relieve the pressure in our daughter’s brain that was caused by the bleeding. They were unable to save her. On Wednesday July 27, 2005 with family by our side we held Mary Owen in our arms while she went on to be with God.

This earth shattering event could have been prevented. The ruptured blood vessel or AVM (Arterioveneous Malformation) was caused by a condition called HHT (Hereditary Hemorrhagic Telangiectasia). This is a hereditary condition that also afflicts my wife, daughter Madison, son Maddox, mother in law and sister in law.

My wife was treated for this condition during her pregnancy with Mary Owen. She had an abnormal blood vessel in her lung that was treated and cured. We had our four year old daughter Madison screened for this condition in 2004. The screening found that she had a 16 centimeter abnormal blood vessel in her brain. This was a sizable AVM that would require surgery to reverse. Mary Owen had been screened back in December of 2004 and the findings were the same. Mary Owen had a 6 centimeter abnormal blood vessel in her brain. We were told by our doctor that the size of Mary Owen’s AVM was insignificant and that they only recommend treatment for abnormal blood vessels that were greater than 12 centimeters in size. We were relieved to hear this news. We thought at that time that we would only have to focus our efforts on treating our older daughter Madison.

For Madison’s treatment we were referred to the Hospital for Sick Children in Toronto Canada. We had been working with the hospital and our insurance company for the last several months in an attempt to get care for Madison. We were initially told by our doctors that there was no need to rush into Madison’s treatment. They said that we had plenty of time to set up her care. These are the same doctors that told us that Mary Owen would not need any care for her AVM. They were wrong, and now she’s no longer here with us. We knew that we needed to expedite Madison’s care while also being careful with her emotional well being as she had watched as her baby sister collapse. We were not sure how to explain to her that she would need care for a similar condition.

We knew with Mary Owen’s passing we had no time to spare in getting Madison to Toronto for her operation. We had people all over the world praying for our daughter. Angie and I were an absolute wreck. We told Madison that we were going to Toronto to take her on a trip to Niagara Falls. So that she would not be scared by going to the hospital I also told her that we were going to visit a doctor friend of mine while we were there and that he had some really cool band aids that he could put on her knee which she had recently skinned up in our driveway. I did not want to lie to her but I felt that I had no other choice.

When we arrived at the hospital we were greeted by our doctor. As I had already talked to him about the story I told Madison he immediately talked to her about the boo boo on her knee. They then gave her some medicine that would make her go to sleep in preparation for the surgery. A feeling of complete terror washed over us as they wheeled her away. Even the fact that she was in the care of the best doctor in the world for this type of procedure was of little comfort. We started praying and pacing. Then suddenly I realized that I had not brought the cool band aids that I had bought to put on her knee in the recovery room with me. I thought “How could you forget them”? I was thinking totally irrationally. I told Angie that I needed to run down to the gift shop to get some so that Madison would not know that I had not been truthful with her. Angie told me that I was acting crazy but I still left to hunt for them.

The band aids were very hard to find. Once I had them in hand I raced back to the elevator to go back up to the floor where Madison was having her surgery. Just as I got to the elevator Angie walked out. Her eyes were filled with tears. I was stopped in my tracks and stricken with fear. I heard her tell me “She’s Gone”. I panicked and felt like I was going to faint. Noticing that something was very wrong with me she grabbed me and asked me if I was ok. She looked me straight in the eyes and repeated what she initially said to me except this time I realized that she did not say “She’s Gone” she said “It’s Gone”. I asked her to explain what she was talking about. She said that the doctors had started the procedure but stopped when they noticed that Madison’s AVM was gone. We raced upstairs and the doctor and his assistant took us in a room to talk. He looked shocked. He told me that in all his years of practicing medicine he had never seen anything like this before. The AVM that was so great in size was completely gone. He said it actually looked like there was never one there even though all of the tests and imaging had conclusively confirmed that there was. I knew right then that we had received a miracle from God. God had healed our sweet Madison. There is great power in prayer and we have seen that power first hand.

Three years have passed since all of this has happened. Madison is doing great. We have since been blessed to add our sons Morgan and Maddox and soon to be adopted daughter Macy to our ever growing family. Even with all of these blessings around us we have still had a very difficult time dealing with the fact that she is not here but we know that we will all be with Mary Owen again. Until that day we will take care of one another making sure that we are humble, thankful and faithful for the amazing blessings that we have received. This is Our Place of Grace…

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I Have a Date

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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

AVM Chance meeting leads to face-saving surgery

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Dr. Rick Hodes was used to hearing "no" when he opened his laptop to show brain surgeons pictures of the young Ethiopian woman. An extraordinary case, they would always agree, but there was nothing they could do.

Although he lives and works in Ethiopia, last October Hodes was in town for a fundraiser and stopped at a St. Louis Park synagogue to pray. He started chatting with Dr. Eric Nussbaum, who was there studying with the rabbi.

"Let me show you some of my cases," Hodes said, as he always does when he meets someone who might be able to help the young Muslim woman with the carefully arranged headscarf pictured on his laptop screen. Those around them who weren't doctors recoiled at the photo. But Nussbaum was fascinated.

By chance, Hodes had bumped into one of the few people on Earth who could the do the brain surgery this young woman needed.

In a way, Nussbaum had worked his whole life toward this moment. It was why he left the University of Minnesota to set up shop in little St. Joseph's Hospital in St. Paul, which was on the brink of closing.

It was why he established a super-sub-medical specialty center for complex brain surgeries that is now gaining a national reputation. It is why he wears a beeper and rarely takes a vacation.

When he saw the photographs in the dim light of Bais Yisroel synagogue, he was ready.

"We could take care of this," he told Hodes.

A rare specialty

Nussbaum, 40, is a rare neurosurgeon, an expert in the brain's blood vessels and benign tumors that originate below the brain in the skull.

"Ninety percent of neurosurgeons do spines," he said. "I don't."

His uncle is the same kind of surgeon. As a child growing up in Maryland and New York, he always wanted to be like that uncle.

Nussbaum came to the University of Minnesota hoping to do the work he loves -- repairing gossamer-thin blood vessels and delicately dissecting out tumors. But he was expected to do all kinds of neurosurgery there

Art exhibition for Pete's sake!

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By Hayley Korn »


Artist Julia Nash is holding her second exhibition of paintings to raise money for her husband’s charity.

Julia, of Water Lane, Kings Langley, is married to Pete, who was diagnosed with an Arteriovenous Malformation (AVM) in his brain, a tangle of abnormal and poorly formed blood vessels the size of a lemon, in 2004.

West Hertfordshire Primary Care Trust (PCT) refused the life-saving operation to cut the AVM from Pete’s brain, as they considered it “too risky”, but he went ahead with the operation in May last year.

Despite a legal battle against the PCT to recover the cost of the operation, which would be put back into Pete’s Fund, the couple have also been refused cover from their insurance company, which has not paid their Critical Life Insurance policy, forcing the family to put their home up for sale.

Julia, 42, a nail technician, launches her exhibition Love and Life on July 24, at Watford Museum until August 2 and from July 24 until September 5 in the Customer Service Centre at the Town Hall, with all profits going to Pete’s Fund.