AVM News X2

Back from polyclinic..
Oh, walked there cause my dad left his ez-link card + work pass at his workplace.. It was raining liao. So too bad.. Ok, reached there, take queue number. Register then met the doctor. Lol. She was asking damn lot of question and making comments like "It must been a shock for your father" Lol...and "AVM are rare, so cannot really say". Ok, then went to Treatment room. The nurse said that I don't need anymore dressing. Put plaster oni for the raw wound. Ok, left the polyclinic and went to buy dinner... Then took 293, got this really cute guy behind me.. Lol... Haiz.. Went home and now blogging. Anyway, was thinking I was lucky to get one the best neurosurgeon, Prof Ivan Ng. Lol.. Dr. Kumar damn funny. He went to my bed at the hospital, then the nurse said I had AVM, then he walked away... I rarely see Dr. John Thomaz... but I didn't get him as my doctor
I ♥ Ayumi Hamasaki!5:14 PM
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Keep on praying for Amy, but she’s doing Better….
These two post are out of Amy’s Caringbridge journal…As you can see, she’s doing much better. Continue to pray for her! Thanks for all those who have been praying.
Wendy

THURSDAY, NOVEMBER 27, 2008 01:14 AM, CST
thank you all for your prayers! the bleeding has stopped and amy is doing alot better now! please continue to keep her in your prayers.
more to come in the morning.

thanks
-Overton Family-

WEDNESDAY, NOVEMBER 26, 2008 11:58 PM, CST
This is Janet Sue, Amy’s mom. We have had an exhausting 35 hours. Amy’s surgery was not an easy one. There was so much bleeding. They were having a hard time with keeping enough blood in her because she would bleed out really fast.
Let me explain. Amy’s body formed veins called AVM’s that compensated for oxygenating the blood through her heart and body. The AVM’s look like small clusters of running veins. She has tons of them in her chest cavity, lungs and around her heart. This is where the bleeding is coming from. The surgeon closed her up and sent her to ICU, she is still bleeding, she is trying to give Amy’s body time to take over and see what it can do on it’s own. The bleeding could slow down, if not, she would have to reopen Amy’s chest and try again to stop the bleeding.
Around, I don’t even know what time it was, sometime late afternoon, the surgeons reopened Amy and attempted to stop the bleeding. This attempt was successful. Her dad and I saw her a few minutes ago and the bleeding has almost completely stopped. Her face is really puffy. She has warm skin with pink nail beds. No more smurf blue. She is pale but she is pink. We are on our way. We still have along hard road ahead of us.
Please keep praying. Amy loves each one of you. You know her friends and her family are very important to her. She will be very touched by all your kindness and prayers. I will update tomorrow as we know more about how she did through the night. I can’t stay with her tonight and it’s very hard. I trust in God and He is holding her hand.
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May God help....

da da da dum.....my avm

My first AVM...I have a pic of no. 2. but I can't figure out how to get it loaded.

There is nothing going on today.... not even on my other blog.
here if you are interested.
So what to do.... well how about me?
(or at least my story)#2
I was on a working vacation.
I went to lunch with a friend... I think....
I woke up in a hospital... my second.... weird.
I could not talk... I was paralyzed on my right side.

My wife had showed up.... with a couple of her sons... they were not well behaved... they are 30 and 27 in age.

My friend showed up too... he is webmaster here.

He spent quite a lot of time with me.

My friend that I went to lunch with stayed with me too... she was an angel!
I quit smoking... it just was not a concern.

Then came the transport came... Another friend drove his camper down.
(I live in GR Mi.)

I really can't tell you much about the trip, I was out of it.

Next came rehab... it feels like it was yesterday.... It was closer to 2 years ago.
I can remember wheeling around the hospital at night and early in the morning... I don't know what I was looking for... but I don't think I found it....

Rehab is a blur... I just don't remember it much... truth is I don't remember much these days.

I got to go home I think it was 2 months... Then came more rehab.
The only thing I was missing was a bed where I took rehab... This lasted 3 months.
Then I was told go home... you are cured... well as much as your going to get. I could not talk... I was terribly frustrated. I knew what I wanted to say... but something in between the thought and my mouth there was a block of some kind.

Fast forward to now...
I still can't talk as well as I would like... but it is getting better. (slowly)
I can manage stairs! I am a little slow... but I manage them none the less.
I got rehired (part time) by my old job. I am not in the same position... but they have me working a little.

I stared smoking again..... dumb I know.
but I did quit drinking... that is one check it the good coulomb.
I take an antidepressant... but that is it.
Not bad if you ask me.... not to bad at all.

I still can not spell... but I never could.
And that's about it...
so let me give youtube a plug...


ha ha ha!


Iron Maiden - 2 Minutes To Midnight (Music Video 1984)

I can cut-and-paste as well as the next guy.

here buy something....

Two for the Day....

first...

Harry

It's sobering when my mom calls me to fill me in on what's going on. I supremely appreciate it compared to walking into work and having people tell me things I should know, but don't.

Kara, Craig and Harry left for Boston yesterday after Kara got off work. They talked to the doctors today and here is what I know after my mom heard it from my aunt who heard it from Kara:

-Harry's heart is still enlarged, but I am assuming it's not as large as it was right after he was born. The cardiologist is optimisic for the surgery and says that his heart is strong enough. There might be some problems after surgery because the amount of blood being pumped through it will be diminished. I have no idea what that will do to him, if anything serious at all.

-The surgery is going to last for at least 14 hours. During which they are going to remove 2/3 of the left hemisphere of his brain and the AVM mass. The bad news is that the mass has rooted on the right, healthy side of his brain and they are going to have to remove the roots as well. If they don't get the roots, it will grow back. They told them to not be surprised if after surgery the right side of his body is paralyzed. It could last six months.

-The AVM is a mass of bloodvessels and arteries and there is one major one I believe on the back of his head they are worried about bleeding out. Despite that, they say the risk of death is 5%. I love how they can whittle everything down to a percent.

-He will have a massive scar from the surgery, which is a given and rather minor. He's a boy and if anything like his brother, dad, uncles, cousins .... the scar will be tuff as hell.

-There is risk for bleeding and swelling after the surgery. In that case, they will insert a shunt to drain the excess fluids, but there is a possibility they will have to go back in to stop the bleeding.

-They say that even with a little over half a brain that he will continue to develop normally. He might be slowed if he is paralyzed for a few months, but like my mom said, he'll walk at two instead of one.

-The doctors speculate that he could be home as early as next weekend. If it was my child, I would not be bringing him home so soon after brain surgery. They would be so far away from the doctors back home, but they say if the stuff that could happen would happen in that span of time.

That is all the info I have right now. The surgery is Monday and I would assume early because it is going to take so long. And God willing, it will take all of 14 hours to do it.
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second...
Dr. Oz...
from...
Dr. Taylor: I had an AVM in July 2005 and I found the show and your book on strokes very informative, insightful, and just great! I have many deficits but health, exercise, and nutrition is very important. I learned allot from the show and your book. First, to mourn who you were before your "event ." I seem to spend time thinking about who that person was and trying to get to that place. Second, that recovery is ongoing and could take many years. I thought I would lose my ability to do math. or to multi-task, or to walk or skip without looking down. I may still lose those abilities but I know there is hope! I was struck by the woman who called in at the end who had an AVM a year and a half ago and was crying. As you know, this event can be very emotional. I cried allot too in the beginning but the crying has lessened. It hasn't gone away. I still get sad, but I'm moving forward now. I hope with time this woman will also. I write Tim Johnson in SD because he had an AVM and is still in the Senate. I've been writing him for almost two years now because I wanted him to have hope from a survivor. It's so important. Many people with disabilities deal with the lack of eye contact and people talking over and around them. Your plea that your not stupid just wounded should be taught at a very early age. As a matter of fact, I got more practical advice from toddlers than anybody! Thank you for bringing these and your many other issues to TV.dr oz
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Here are two.... AVMs

I Get By With A Little Help From My Friends!

from...

(It has many photos.... well worth the time)

Greetings to all this evening!

How is everyone? Well, I've had quite a day I thought I would share! I still can't believe what happened myself! So, it all started this morning right after I got to work! My co-worker Kathy had been out last week, just as I had, and wasn't in yet this morning - and our Supervisor Mr. Jay Rios was about to leave for a meeting @ the main office - so I needed to go down the hall and leave the phones @ my desk while I did what I needed to. I was rushing, so I could get back, when I tripped over my own shoes, just for being in a hurry! I fell forward and kept hoping I could catch myself before doing too much damage! No such luck! I'm guessing when I fell forward or from the stumble, my right big toe jammed to the end of my shoe and is now hurting! I ended up bumping into the wall, then falling backwards where I hit my knee and then landed on my behind and then on my back! Luckily, @ this time of the morning, many of my co-workers were going about their morning routines and saw what had happened to me! I know there was a man down the hall that asked if I was ok, and I remember saying, "I don't know"! and moaning in pain (and shock)! The next person I remember seeing was Connie Morgan from the IT department! I know she had a very concerned look on her face and ran to grab a handful of paper towels after telling me I was bleeding! I had a feeling that would be happening! From the impact of the fall, I started bleeding from the wound on my face. For those of you new to my blog - I have an AVM (arterial venous malformation)that I have to constantly be looking after! PLEASE VISIT MY FRIEND SHALON WHITGOBS WEB SITE FOR LOTS OF GREAT MEDICAL INFORMATION ON AVMS! YOU CAN GET TO HER SITE FROM MINE, OR GO TO: http://sites.google.com/site/shalonsavm/Home. I remember my co-worker Roland asking whether I needed help getting up off the floor. People were asking me what they could do to help - I said to no one in particular, that I needed my medical bag that was in my desk area. Immediately, my co-worker Gina McMillan ran to my desk and got my 2 totebags. I got up, took the totebags and told everyone I would be ok - I just needed to get the bleeding under control by putting pressure on the wound site. I met Martha Sanchez from Risk Management that is a sweetheart! She told me not to be concerned @ all about the bloody mess on the floor - she was calling housekeeping or someone to come clean up! I want to make sure you know that the bleeding came from the impact of my fall, but not because I actually hit the area of my face or anything. I knew when I hit the floor that hard, that I would probably have a bleed from the wound area.

My co-worker Ray Rodela was very concerned and kept asking what he could do to help. He's always told me if I ever need him to cover the phones while I need to go down the hall, he is more than willing to help! Another co-worker, Kim Escamilla came to the bathroom to check on me, and make sure I didn't need any help getting the bleeding stopped. Grace Garcia, my co-worker kept asking whether I was dizzy or needed to go home. Even the tall, young man that works down the hall came to the bathroom door to ask if I was ok! Gina took over answering the phones until I could get back to my desk, thanks so much! We have a great team of people @ Court Services Supervised by Mr. Jay Rios!

I just wanted to take this time to thank all of you for being so great in my time of need! I know now that I have nothing to worry about should this have been an actual emergency! I think it was Connie Morgan that asked if I needed her to call 911. She came in to my department later in the day to check on me. Martha Sanchez really made me feel better talking to me about some of the things going on in her life medical wise. Of course I filled out a workmans comp. form for my protection - but I think I'll be fine! Thank you so much everyone on the 3rd floor that came to my rescue - I am very impressed with how everyone came together to help!!! Normally when I have a "bleed" @ work, my friend and co-worker Diana Arredondo helps me redress the area, but she was @ the main office @ a meeting, so I was on my own this morning. I probably could have put something together from my wound care bag to cover the area, but I called my husband Mark to come help! After that darned fall, I really needed some TLC and the best one for that job is my amazing husband! He was over right away and got my wound area redressed! After a couple great hugs, I was good to go! I usually keep an extra t-shirt in the bag which I needed to change into after bleeding all over what I was wearing earlier!

A few years back I fell down @ work while I was working @ the main office, and I still have one of those walking casts (boots) - I'm wearing it now and think I'll wear it a while! At least it will slow me down some! Wish I had a photo to include of my co-workers, but I'll see what I can post for now! Thanks again everyone!

Oh! I happened to have taken Rulon w/me to work today, but already I'm being asked where Saba is! For those of you who don't know - Saba is my Therapy Build a Bear! She is named after one of the techs @ the Swedish Medical Center where I have my procedures for my avm! The real Saba is from Eastern Ethiopia and a doll!

Cyndi Schuman

P.S. The photo I've included, was taken outside the Whole Foods Mart in Englewood, CO! My sister Celia and I had gone for one of my treatments around this time last year and it was snowing!
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Day 3 Prayer Focus - My Face

At this point, the right side of my face is still frozen. When I smile, only the left side of my mouth turns up. My right eyebrow and forehead remain still while my left eyebrow arches and the left side of my forehead wrinkles. Again, during the surgery, the choice to partially cut important nerves had to be made to remove the AVM and save my life. The intracranial nerves that control my facial movements, from my forehead to my chin, including my lips, tongue, and soft palate, are damaged to a degree where there is no real response at all, unlike some of the other damaged areas. There has been some tingling and even stinging a few times on the right side of my face, especially during the electrical stimulation therapy (electrodes are put on my face, as well as my throat during swallowing therapy), as well as some sensation returning to my soft palate. Apparently, the right side of my face has less droop than it used to, but that is hard for me to notice. Also, the inside of my right cheek is numb, like after a dentist appointment where novacaine was invovled, so it feels like I have a large chunk of chewing gum lodged there.

The hard thing about having a face messed up is that everyone knows that there is something wrong with me. If it were not for my face, then it would be difficult to tell what had happened to me. Also, the issues with my face and the affected nerves create major problems with my right eye and mouth, which greatly impairs my sight and my speech (see Days 4 and 5). Please pray that the right side of my face would wake up again.

Day 2 Prayer for SWALLOWING Follow-up:
Today during swallowing therapy, I gagged multiple times in response to the cold lemon swab rubbing the back of my throat, more times than I usually do (though there was still no response on the majority of right side rubs, while the left side almost always automatically gags). This is progress because it shows increased sensation in my throat with a corresponding reflex, both very important for swallowing. My next swallowing test will likely be next week on October 21 (6 months exactly since my AVM rupture), so please pray for more signs of progress!

Day 1 Prayer for WALKING Follow-up to the Follow-up:
Today in physical therapy, I walked the length of the breezeway 4 times (totaling over 100 yards)! Again, I had a good deal of assistance, with Jay in the front and a therapist in the back to steady me when I needed it and to give me verbal cues, but nonetheless, it was great progress. (see the picture on Caringbridge) This is also a great indicator of the strength and endurance I have gained since I have been here. Praise God!

Love,
Katherine, Jay, and James

“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

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...and that's it...
It seems unreal the feed-back that some people get. Good for you, I say.
Today I go to work. We'll see how I do.
Wish me well!
No youtube today... I got things do due!
(Ha ha ha)
Peace,
R

Of all the cool things in his family's new home, Jimmy Trier likes the elevator best.

Of all the cool things in his family's new home, Jimmy Trier likes the elevator best.

When Jimmy, 14, wants to go upstairs to his room, he opens a wooden door, pulls back a gate and moves his wheelchair in.

His parents, John and Barb, built their two-story brick house on the top of a hill in Adel on the farm that Barb's family homesteaded in 1846. They moved in at the end of May.

"We built the house because of our son," John said. "He was injured five years ago with what was called an AVM bleed and almost died. We lived South of Grand and it just didn't work, so we sold that house. We kind of carved a little spot on the hill and took about a year and a half to get the whole thing done."

An AVM is an abnormal collection of blood vessels.

The Triers found the plan for the house on the Internet.

"It's kind of a recycled plan from a Texas architectural firm," John Trier said. "Arts and Crafts/Prairie style, I guess. It had everything we wanted. It had the high-up windows for the view. It had a back stairway, so we were able to take that out and use it for an elevator."

Trier, a carpenter who specializes in finish work, did the woodwork throughout the house. He chose quarter-sawn white oak for the trim because the family wanted a heavy, old look. Antiques - including an assortment of microscopes and navigation instruments - line the tops of old dentist cabinets and card catalogs.

Heavy furnishings - some with simple lines, others with ornate carvings - are balanced by the open floor plan, abundance of windows and yellow textured walls.

The Finished Edge in Des Moines put a veneer plaster texture over the drywall and a sand finish on the ceilings.

"I kind of joke that I know from my business that nobody comments about the woodwork," Trier said. "They all say, 'The walls, look at the walls, look at the ceiling.' And I say, 'What about the stairway?' "

John designed the Arts and Crafts stairway to the second floor. He said growing up in a house in Johnston designed by Frank Lloyd Wright - built in 1957 at the end of Wright's career - influenced much of what he prefers in woodwork.

Although the Triers like turn-of-the-century design and antiques, they say that a wider range of aesthetics drives their home decor.

"The pedestal of the dining room table is probably why we bought it, because we appreciated the artistry that went into it," Barb Trier said.

John Trier also was drawn to the carving on the back of the dining room chairs. And he said that instead of picking a Prairie-style fireplace mantel, the couple picked out a more ornate one just because it was more interesting.

"I don't think we'll win any decorating awards," he said.

"You can take a theme to extreme," Barb Trier said.

"We like the word eclectic," John Trier said.

One of their favorite things to collect is antique lighting - especially old post office or other governmental fixtures.

Trier said that he likes to make fun of the light fixture over their dining room table.

"You'll notice that one shade is different. For those who know lighting, the five that do match are really great shades," he said. "We've looked; we just can't find it. We had to stick another shade on there."

But they hold out hope that someday the shade might show up, Barb Trier said.

"It would be like winning the lottery."

Homestyle is a publication of The Des Moines Register.

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Continuing AVM Education

Continuing AVM Education
Below is an explanation of what Arteriovenous Malformations are by Dr. Ed Zimney. This blog can be found on Dr. Z's Medical Report at http://blog.healthtalk.com/zimney/

I appreciate very much Dr. Z's explanation of what AVM's are. He provides a very concise explanation. I have tried to post the weblink for the actual page in which he posted his explanation on AVMs (see http://blog.healthtalk.com/zimney/arteriovenous-malformations-tangle-of-blood-vessels/ however, the link would not work once I posted it with my favorite links. I have provided Dr. Z's main blog url though.
Kimberly

The Tangle of Arteriovenous Malformation as written by Dr. Ed Zimney 12/2006 at: http://blog.healthtalk.com/zimney/arteriovenous-malformations-tangle-of-blood-vessels/

"An AVM is an abnormal tangle of blood vessels that develops before birth. They can be located anywhere in the body, but those in the brain or spinal cord are more likely to cause symptoms. It is believed that about 300,000 people in the U.S. have an AVM, while only about 36,000 (12 percent) have any symptoms and very few of these people have symptoms severe enough to be life-threatening. About 300 people (one percent) of those with AVMs die each year as a direct result of the condition.
Under normal circumstances, arteries, which carry oxygen rich blood away from the heart become progressively smaller and smaller until they become capillaries, the smallest blood vessels. Capillaries allow the oxygen from the arterial blood to enter tissues and cells where it is required for life. As the cells use up the oxygen, the deoxygenated blood begins to collect in the smallest veins. The veins grow in size until they eventually return all the blood to the heart and back to the lungs for reoxygenation. In an AVM, however, capillaries are bypassed and the small arteries are connected directly to the small veins. In addition, there are many of these abnormal connections giving an AVM the appearance of a tangled up knot of vessels. These tangled knots can vary in size from very small to very large.
Whether an AVM causes symptoms depends in part on its location and in part on whether the vessels leak blood or actually rupture. As noted above, arteries normally decrease in size gradually, which allows the blood pressure also to drop as the capillaries are approached. But in an AVM, the arteries connect right to the veins and expose the veins to a much higher blood pressure than normal. Veins are normally thin-walled because they do not need to withstand higher blood pressure and therefore they are not always able to handle the pressure. This can result in minor leaking of blood, without symptoms, all the way to a rupture with resulting hemorrhage.
If an AVM is small or located away from important structures, it may never cause symptoms unless it bleeds. But if an AVM is located close to important tissue it can press on the tissue and cause symptoms even without bleeding. Oftentimes, AVMs are located in the brain or spinal cord. The brain and spinal cord are tightly enclosed within bone and any abnormal growth can press on these tissues causing neurologic symptoms. Or they may just sit there, for example if they are flat and near the surface, and be unnoticed unless they begin to bleed. Bleeding inside the brain can cause major damage called a hemorrhagic stroke. This may require emergency surgery to remove the blood and to stop the bleeding.
If an AVM becomes symptomatic or if it bleeds, it may need to be treated. There are basically three approaches to treating an AVM and they depend on size, location and whether some of the vessels are actually supplying some tissue with oxygenated blood. One type of procedure is to insert a catheter through an artery and extend it to the AVM at which point some material is injected into the AVM with the hope of clogging it up so no more blood passes through it. This doesn’t always completely work and in some cases cannot be done because too much blood flow might be obstructed. Another approach is through surgery where an attempt is made to tie off parts of the AVM and to remove other parts of it. Because of the tangled nature of the AVM, this type of surgery can be very difficult or dangerous, especially if the AVM is in the brain.
The last technique is to use a highly focused radiation beam to damage the vessels in such a way that over time they simply shrink up and close off. This technique uses the gamma knife technology, which uses radiation as a surgical tool, with no actual cutting through the skin. Further developments in the field of treatment for AVMs will likely come from improved imaging techniques (e.g., MRI) combined with precisely delivered radiation."

Letter: Ricky Arsenault updates supporters on surgery (July 17, 2008)

Letter: Ricky Arsenault updates supporters on surgery (July 17, 2008)

from...

Editor:
It has been an amazing journey since I announced that I was planning on having needed surgery on my birthmark. And the journey has just begun! On behalf of the Arsenault family, I would like to express my profound gratitude to the many individuals and organizations throughout our community that have rallied around us as we strive to prepare for my pending surgery. The compassion and service rendered to us in our time of need has truly been overwhelming! Not only have the fundraising efforts exceeded our estimated out-of-pocket expenses of $20,000 to 30,000, but the support from friends and strangers has been awe-inspiring. The fund that was started at TD Banknorth has received large monetary donations, but even more impressive to me has been the opportunity to be a witness of giving in the similitude of the “widow’s mite” as recorded in the New Testament. It is truly a very humbling experience to be the recipient of so much selfless giving of not only money, but of an often more precious commodity; time. As the process moves forward this summer, the adequacy of these funds will be determined as we are able to find out what will not be covered by our insurance. Nevertheless, I have been assured that the Lord would provide in His own way. I have seen, and felt, the hand of my Lord working through many Christ-like individuals.
I have stated that one of the greatest blessings that have flowed unto me throughout this past year has been the surfacing of past friends and the transformation of strangers into friends. When the first article hit the papers, my phone starting ringing with offers of support and help from many. The first call came from a woman that I had not previously known. She jumped into action and rallied others to help in my cause. The next call came from one of my old (not that we’re old by any means) high school classmates and football team members. To my recollection, his message went something like this: …don’t worry about the cost…whether its $20,000 or $30,000…it’ll be covered…I’ve been talking to…go ahead and schedule your surgery…we love you. Not exactly the kind of message one would expect from someone from the old football squad. But a portion of the Spirit of Christ dwelleth in his heart and in the hearts of many that I have had the pleasure of interacting with recently! If I were able to make just one request of all of you reading this, it would be this: Please don’t sink back into the woodwork! One of the ironies of life that I have come to loath is this scenario: Meeting an old friend or acquaintance and having a 20 to 30 second conversation. Either they or I say something like: “Hey how ya doin’… What’s new?” The other says “Not much, how about you?” “Na, same old thing.” We haven’t seen each other in years and nothing’s new? We speak for a few seconds and part ways, perhaps I with their phone number or them with mine with the real intent to get together someday, but no follow-up is made. I probably wouldn’t loath this situation so much if I were not just as guilty as most of you reading this are. In the past, I’ve even gone so far as to look at their phone number and have said to myself: “Self, I’d love to get together with ______ , but I’m too busy, maybe later. Unfortunately, later usually never comes. Next thing I know, another several years passes by before I talk with them for another 20 seconds or so, or even worse, the Lord calls them home and they pass away and I find myself attending their funeral (or worse yet, I’m even too busy to attend). My point in this particular paragraph is to illustrate one of the greatest blessings that the Lord has bestowed unto my soul. Friends are a very precious commodity. Don’t take them lightly! I hope to be able to strive with all my heart to treasure more fully than ever before the friendships that I have acquired here upon this earth and I have set a personal goal to nurture them with much greater care than I have in the past! So, my request is this: Please call me so we can get together and find out what’s new. I’ve heard a wise man state: “Everyone has a story.” I’d really like to hear yours!
Now after that commercial, I’ll get back to my upcoming surgery. After approximately a year of research, the two surgical groups that have surfaced which have the greatest potential of success in the realm of arterial venous malformations (AVMs) are right in our own backyard. My family has recently met again with Dr. John B. Mulliken of the Vascular Anomalies Program in Boston and Dr. Milton Waner of the Vascular and Birthmark Institute of New York. A year of research, pondering, and prayer to determine which of these extremely competent surgical groups would best serve my particular needs have finally come to a close. The exact procedures and inherent philosophies of the two groups differed somewhat, therefore I diligently sought the guidance of my Lord to have the wisdom to choose His will. I believe that He has plainly manifested to me that I should have the needed procedures performed by Dr. Waner’s group in New York.
The initial procedure will be done on Aug. 28 by Dr. Alex Berenstein. He is a pioneer in the field of Interventional Neuroradiology. His procedure will involve insertion of a catheter into my femoral artery and running it up into my facial network of jumbled arteries and veins. An arteriogram will be done to produce a map-work of my AVM. He will then perform a selective embolization procedure that shall restrict the blood flow into my AVM in an effort to devascularize the AVM. The goal is to cause a reduction in the swelling and decrease the amount of blood flow into my AVM. After a gestation period of several weeks, another embolization procedure shall be performed followed by the removal of the “nidus” (center of AVM) the following day. Additional procedures shall be performed as necessary to achieve stabilization and improve my quality of life. According to the experts, there is no “cure” for AVMs…only control. When asked how long everything would take, Dr. Waner estimated that we are looking at two to two-and-a-half years of multiple procedures and surgeries; however Dr. Berenstein stated that each AVM is very unique and he would not place any time frames on what needs to be done.
Your prayers are very much appreciated in this time of need to invoke the powers of heaven as my family undergoes this journey. I am being realistic; I’m expecting a miracle! I will do my best to update our Web site from time to time as this process unfolds. For those that have an interest, it is: www.rickyd.ws
Thanks again for all of you that have reached out to my family and who continue to bless the lives of those in our community and around the world with your Christ-like service. I pray that our Lord Jesus Christ will pour upon each of you His choicest blessings as we prepare for His triumphant return to rule and reign here upon the earth.
Ricky D. Arsenault
Sanford

Brain Scientist Jill Bolte Taylor Talks About Her Stroke

Brain Scientist Jill Bolte Taylor Talks About Her Stroke

from...

And the "euphoria" and "nirvana" she experienced when her left brain went offline.

From her bio:

"Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist. She specializes in the postmortem investigation of the human brain.

On December 10, 1996, Dr. Taylor woke up to discover that she was experiencing a rare form of stroke, an arterio-venous malformation (AVM)."

The account she gives in this video of losing her sense of self - the boundaries of where her skin stops and the background emerges - is extraordinary. Her unique training in brain science coupled with an ability to articulate this experience is rare. I was riveted.

An excerpt:

"It was as though my consciousness had shifted away from my normal perception of reality where I'm the person on the machine (she was on a cardio-glider exercise machine) having the experience to some esoteric space where I'm witnessing myself having this experience."

"I'm standing in my bathroom getting ready to get into the shower ... I lost my balance and I'm propped up against the wall and I looked down at my arm and I realized I could no loner define the boundaries of my body. I can't define where I begin, and where I end, because the atoms and the molecules of my arm blended with the atoms and molecules of the wall."

"Because I could no longer identify the boundaries of my body I felt enormous, and expansive. I felt at one with all the energy that was, and it was beautiful there. And all of a sudden my left hemisphere comes back on line and it says to me "Hey! We got a problem. We got a problem. We've got to get some help."

Missing in Action - plus more.

Missing in Action

Hello fellow travelers! Sorry for the long absence. Honestly, even AVM bloggers get tired of having AVMs. It's true. I made it through my semester and finished everything. I won't say I did well on my finals, but I finished and did not flunk out, so that is a small victory. All has been quiet on the brain front, which is good news, I am six months post gamma knife now, and still counting the months until that one year MRI. I am also moving. As hard as it is to move away from the Mayo Clinic and the blessed botox neurologist, this place has been killing me. Since everyone seems to think I am really lucky, I am considering buying a Kawasaki Ninja to celebrate. People have told me I am out of my mind to do this, but, hey, I've got a good excuse, right?

Migranes and Hula-Hoops

Last night I had my first real headache since having gamma knife for my arteriovenous malformation. In the past I have had random pains, weird sensations, and passing discomfort, but nothing like this. I called the pharmacy and asked them if I had any refills, they replied, "of what?" They seemed taken aback when I said, "Whatever, anything really." No dice.

My head felt like it was splitting open, but I still drove 20 miles to take a baby bird to a wildlife refuge, and went to two separate stores looking for hula-hoops for one of my kids, wondering all the while if I was going to drop dead in the process. By time I got home (after three temper tantrums--the baby's, not mine), I am bitched out by my older child about the sub-par hula-hoop. She followed me around the house, hula-hooping and moaning, making faces and stomping her feet to demonstrate what a terrible hula-hoop her mother had imposed on her. I was curled up, holding my head in my hands, and I tried my best to think of a way to constructively ask her to stop, but that came out was: "Will you please fuck off?"

I am thinking about writing a book about my AVM experience, but if that doesn't work out, maybe I'll give Lynne Spears a run for her money and write one on parenting instead. I will call it: "Profane Parenting: Nurturing Through Expletives for the Vascularly Challenged"

Who else has used this technique?

Insurance is a Magical Thing!

(Photoshop Dramatization)

Well, it turns out that if your insurance decides to cover Botox for neurological damage, Neurologists suddenly decide that wrinkles are neurological damage! From now on everyone will just have to picture my world weary, sardonic expression in their mind's eye! Wooohoooo!

Monday, May 26, 2008

Is That a Giant Sucking Sound, or is it Just Me?

There are international agreements governing trade, and countries who are parties to the agreements take on certain obligations that prevents them from erecting barriers to free trade. For example, customs rules. A country must agree to publish instructions on what you must do in order to get things through customs. Sounds simple, but there is a reason the rule was needed. In order to protect domestic industries, countries come up with clever and sneaky ways to foil trade. Many only published lists of things that you can't do if you want to get things through customs. An affirmative idea is infinitely more powerful than a negative. Imagine if you asked my how to roast a chicken, and I said, "Don't boil it." Not very helpful, although technically true.

Lately I have been inspired by this concept as it relates to personal healing, both for my brain and my spirit. I don't want my AVM to bleed, I don' want to have gamma knife again, I don't want a craniotomy, I don't want a seizure, a migraine, or an anuerysm.

These are all really general thoughts and fears, diffuse and tress induceing. They don't really address my hopes, my wants or desires. From now on I am trying to channel my thoughts into the affirmative. I want the AVM to be obliterated. I want my brain to heal. I want to relax. If I give my brain clear instructions, I am hoping to remove the barriers to healing. A treaty, if you will, to root out the sneaky processes that undermine progress. And while Ross Perot might disagree with my logic, I'm hoping the benefits will lead to better relations between my body and mind...after all, they're stuck being neighbors, they might as well get along.

84 Charlie MoPic!!

You have to see it!
It is a Viet Nam flick.
It is the finest Viet Nam movie!

you can buy copies at Amazon... I know it looks like I am selling you something... and in reality I am....
but what the hell.

it really is the best!

futher in todays news... i still cant spell... and i am still losing at Party
Poker!
all is well ... here in Stroke Land!

Half of Canadians don't treat stroke as emergency

from...

CTV.ca News Staff

A new cross-country survey by the Heart and Stroke Foundation has found that Canadians are not taking the warning signs of stroke seriously -- to their own peril.

The report card finds that at least half of all Canadians don't respond to the signs of stroke the way they would to other medical emergencies.

"We were very surprised by the results," Stephen Samis, director of health policy at the Heart and Stroke Foundation, told CTV Newsnet on Thursday.

"It's pretty frightening to think that half of Canadians don't think that stroke is a medical emergency, especially when you think how critical it is that Candians get to the office of their doctor or to the hospital as soon as possible."

Stroke, typically caused by a blood clot that cuts off blood flow to the brain, can be treated in most cases if it is dealt with within three hours.

But once that window has closed, the effects are usually irreversible, Samis said.

"Canadians, like other people, will often think 'oh it will pass, it's not a problem.' The problem with stroke is, you don't have time to do that," he said.

"If you have any of those warning signs and if they're sudden, even if they're temporary, call 911, get to the hospital. If you get there within three hours if it is a stroke it can be reversed."

Here are some of the warning signs of stroke:

* Sudden vision problems
* Headache
* Weakness
* Trouble speaking
* Dizziness

The study found that three quarters of Canadians can recognize at lease one of those signs of stroke, but less than half said they would call 911 if they or someone they knew was experiencing one of the signs.

Samis said the survey is intended to serve as a wake-up call to Canadians.

About 50,000 Canadians experience stroke each year, The Heart and Stroke Foundation estimates:

* 15 per cent will die
* 10 per cent will recover completely
* 25 per cent will recover with a minor impairment or disability
* 40 per cent will suffer a moderate to severe impairment
* 10 per cent will suffer severe impairment and will require longterm care as a result

In a province by province analysis, the study found that Quebec had the highest proportion of people -- 53 per cent -- who said they would call 911 if they experienced one of the symptoms.

Newfoundland had the lowest proportion, with only 24 per cent saying they would call 911.

Here are the results for the other provinces:

* Ontario: 51 per cent
* Nova Scotia: 50 per cent
* British Columbia: 49 per cent
* Alberta: 43 per cent
* Manitoba: 41 per cent
* Saskatchewan: 33 per cent
* P.E.I.: 26 per cent

Averaged out nationally, 49 per cent of Canadians said they would call 911 if they experienced one of the signs of stroke -- a number that is far lower than it should be, the Heart and Stroke Foundation maintains.

Head Injury Overview... is what i'v been doing

Head Injury Overview

Head injury is a general term used to describe any trauma to the head, and most specifically to the brain itself.

* Skull fracture: A skull fracture is a break in the bone surrounding the brain and other structures within the skull.

o Linear skull fracture: A common injury, especially in children. A linear skull fractures is a simple break in the skull that follows a relatively straight line. It can occur after seemingly minor head injuries (falls, blows such as being struck by a rock, stick, or other object; or from motor vehicle accidents). A linear skull fracture is not a serious injury unless there is an additional injury to the brain itself.

o Depressed skull fractures: These are common after forceful impact by blunt objects—most commonly, hammers, rocks, or other heavy but fairly small objects. These injuries cause "dents" in the skull bone. If the depth of a depressed fracture is at least equal to the thickness of the surrounding skull bone (about 1/4-1/2 inch), surgery is often required to elevate the bony pieces and to inspect the brain for evidence of injury. Minimally depressed fractures are less than the thickness of the bone. Other fractures are not depressed at all. They usually do not require surgical treatment unless other injuries are noted.


Intracranial (inside the skull) hemorrhage (bleeding)

* Subdural hematoma: Bleeding between the brain tissue and the dura mater (a tough fibrous layer of tissue between the brain and skull) is called a subdural hematoma. The stretching and tearing of "bridging veins" between the brain and dura mater causes this type of bleeding. A subdural hematoma may be acute, developing suddenly after the injury, or chronic, slowly accumulating after injury. Chronic subdural hematoma is more common in the elderly whose bridging veins are often brittle and stretched and can more easily begin to slowly bleed after minor injuries. They are potentially serious and often require surgery.

* Epidural hematoma: Bleeding between the dura mater and the skull bone is an epidural hematoma. These occur when arteries are cut. Injury in the temple area is a common cause. Epidural hematoma is potentially serious and often requires surgery.

* Intraparenchymal hemorrhage/cerebral contusion: These terms describe bleeding into the brain tissue itself. A contusion is like a bruise to the brain tissue and usually requires no special intervention, much like a concussion. Most doctors admit people with cerebral (brain) contusion into the hospital for observation for rare complications such as brain swelling. An intraparenchymal hemorrhage is a pool of blood within the brain tissue. Minor bleeding may stop without any treatment and cause no serious problems. More serious or large bleeds usually require surgery.




more...

I keep reading hoping for a miracle...who knows? I could get lucky.
but any way give them a read...

Stroke and Depression: Frequently Asked Questions

Stroke and Depression: Frequently Asked Questions
Robert Robinson, MD
Division of Psychiatry
University of Iowa Hospitals and Clinics

Creation Date: June 2000
Last Revision Date: December 2004
Peer Review Status: Internally Peer Reviewed

Some facts: there are approximately 500,000 strokes that occur in the United States. Of those strokes, about 70 to 80 percent of patients survive the stroke. Of those patients who survive the stroke, depression occurs in approximately 40 to 50 percent of patients. Major depression occurs in about 20 percent of patients. Major depression is the most severe form of clinical depression that we recognize in neuropsychiatry. Another, about 20 percent of patients, will develop minor depression. There are some, approximately 10 to 20 percent of patients, who develop either major or minor depression some months or even a year after the onset of the stroke. Most depressions occur within the acute period after the stroke, but there are some depressions, that are delayed in onset and occur during the first year of poststroke recovery. The issue of poststroke depression has gained worldwide interest in the past 10 years. There has been a general agreement about the prevalence of both major and minor depression after stroke. Depression is one of the major impediments to full physical and mental recovery from stroke.

Do most stroke sufferers end up suffering depression?

Approximately 50 percent will become depressed at some time during the first two years after the stroke. The majority of patients, approximately 40 percent, will develop depression within the first one to two months after the stroke. There is another number of 10 to 20 percent of patients who will develop depression at some later time during the first two years.

What type of rehab can help with stroke depression?

By rehab, I assume what is meant is the usual types of rehabilitation therapy such as physical therapy, speech therapy, and occupational therapy. These do not specifically treat depression after a stroke. The treatment for poststroke depression that has received the most scientific study has been the use of antidepressant medications. Both Nortriptyline and Citalopram have been demonstrated in controlled studies to be effective in treating poststroke depression.

more...

AVM...

AVMs can cause a wide range of specific neurological symptoms that vary from person to person, depending upon the location of the malformation. These symptoms may include muscle weakness or paralysis, loss of coordination, difficulty carrying out tasks that require planning, dizziness, visual disturbances, problems using or understanding language, abnormal sensations (such as numbness, tingling, or spontaneous pain), memory deficits, mental confusion, hallucinations, or dementia.

It was noted that during his phone call with reporters the Senator began having difficulty with his speech, including having problems finding the words he wanted to say and slurring his speech. Senator Johnson was displaying the signs that he was in the early stages of a stroke, in his case caused by hemorrhage from his AVM.

There are two types of stroke: ischemic and hemorrhagic. Ischemic strokes occur when the blood flow to the brain is stopped by a blood clot or by low blood pressure throughout the body. If you are talking to a medical professional, they may refer to the formation these blood clots in one of two ways, either thrombosis or embolism. A thrombosis is a clot that forms in an artery or vein and stays in the place where it forms. An embolism is a clot that forms in one place in the body (often in the heart) and then travels somewhere else (usually the brain), and becomes trapped in an artery.

There are other sources of emboli besides blood clots, such as broken off bits of arterial plaque, fatty emboli which can occur after surgery or broken bones, amniotic emboli after childbirth, and bacterial emboli from an infection in the heart called endocarditis. The most common emboli is a clot that forms in the heart of a person in atrial fibrillation and travels to the brain.

The result for all forms of emboli is the same: lack of blood flow beyond the embolus causes a loss of oxygen and nutrients to the body's tissues. This is called ischemia (pronounced iss-scheme-ee-uh), or in the brain, ischemic (iss-scheme-ick) stroke. The other way an ischemic stroke can occur is if there is reduced blood flow to the brain, such as when a person is in cardiac arrest or has great blood loss from a major trauma. In these cases there is too little blood getting to the brain, which causes a loss of oxygen and nutrients to the cells and they die. It is known that about 85-90% of strokes annually are due to ischemic events.

A hemorrhagic stroke is a form of stroke that occurs when a blood vessel in the brain ruptures or bleeds. Like ischemic strokes, hemorrhagic strokes interrupt the brain's blood supply of oxygen and nutrients because the bleeding vessel can no longer carry the blood to the brain tissue. As the bleeding continues, it causes increased pressure in the brain, which physically impinges on the tissue and further restricts blood flow into the brain. For this reason, hemorrhagic strokes are more dangerous than the more common ischemic strokes.

There are two types of hemorrhagic stroke: intracerebral hemorrhage, and subarachnoid hemorrhage; Senator Johnson suffered from an intracerebral hemorrhage from a ruptured AVM. Intracerebral hemorrhage (ICH) is bleeding directly into the brain tissue, forming a gradually enlarging pool of blood. A Subarachnoid hemorrhage is bleeding into the cerebral spinal fluid in the space between the brain lining and the brain itself.

Unfortunately most AVMs are not found until they cause a problem, or they are discovered accidently because the brain is scanned for another reason. Senator Johnson was very lucky; his AVM was discovered early on and surgery was performed right away, giving him the best chance of a full recovery.

Despite the commentary from the newsies and political pundits, it is much too early to speculate on Senator Johnson's ability to make a full recovery or whether or not he will resume his duties in Washington. In an interesting side note, in 1969 another South Dakota senator, republican Karl Mundt, suffered a stroke while in office. Mundt continued to serve until the end of his term in January 1973, although he was unable to attend Senate sessions and was stripped of his committee assignments by the Senate Republican Conference in 1972. Senator Johnson, who was elected in 1996, holds the same seat previously held by Mundt.

Personal stroke prevention is similar to heart disease prevention: controlling high blood pressure, blood sugar and blood cholesterol levels, not smoking, and getting regular exercise all help to prevent stroke.

It is also important for you to recognize the signs and symptoms of stroke in others, so that you can assist them to seek early treatment. In the same way that early intervention in heart attack saves muscle, early intervention in "brain attack" can save brain cells.

Researchers at the University of North Carolina-Chapel Hill School of Medicine developed this one-minute, three-step stroke assessment test to enable bystanders to quickly screen for a possible stroke diagnosis. Learn this 3-step stroke assessment and pass it on to all your friends:

You may remember the steps to this test by thinking of the first three letters of the word stroke, S-T-R

S: Ask person to "Smile broadly, showing your teeth." This "smile test" is to look for one-sided facial weakness or paralysis, shown as a drooping on one side of the lips.

T: Ask the person to "Talk" to you by repeating a simple phrase, such as "don't cry over spilled milk, " or "it is a rainy day." This is a check for difficulty speaking or understanding speech or following basic instructions.

R: Ask person to close their eyes, Raise their arms in front of them and hold them out for a count of ten. This is to test for arm weakness or paralysis (if standing it can also test for leg weakness, paralysis, dizziness, or loss of balance.)

If any or all of the above are noted to be true, the person should be taken by ambulance to the nearest emergency department for evaluation for a stroke. Doing this quickly could prevent a person from living with a lifetime of neurological deficits or from death.
For more information, please see the Web MD Stroke Health Center

this one aint bad

i had every thing but death...
i had an anurisem. only spell correctly.


lets see if they got any other one...

that aint bad...


umm there a though....

if you want to make a donansion (aging spelled correctly)try www.americanstroke.org

merry Christmas

i am so pissed off...

ok you idiots read this...
http://www.americanstroke.org/content/view/91/125/
oh ya...
then read this...
http://www.americanstroke.org/content/view/36/56/

and keep reading... you idiots!


10 ways...

my speech is different... and my right hand side is fucked up.
but thats about it.


ok i'll go now...

http://www.youtube.com/watch?v=uG4hI2aHFVE
This compilation of photographs from various sources was matched to one of my favorite songs by the late John Denver.
It is dedicated to Erica F. a courageous very young Canadian stroke survivor, mother of 3 who has shown enormous courage and determination under the most trying of circumstances by maintaining her determination and dignity.
The video reflects the initial sombre mood and helplessness that patients can display after a stroke followed by what should be in my opinion, our life's philosophy, as described in the lyrics of the song.
Listen closely to the words. You might learn something.
Cheers Erica!
Unauthorized use of this video is forbidden.
Please donate to The Heart and Stroke Foundation of Canada.
Who knows? YOU might need them next time!

good day....


and this too...

oh almost forgot this one...

i can not belive i have a pr of 3!

i have a pr of 3! thats right 3!
damn!

oh well 3 it is...

if you wanted to post a link here i think it would help..
sure I know it stinks since i have had my stroke...

here you go...

ouch!



i can never remember the link i want to put here...
oh well....
i was never given the devises you see...

fuck

what you do matters....

and smile...



if any of you wish... i will take a book

da stroke... it really rocks!

what can i tell you...
for my regule readers you can this one...


what is that!!!


say what!!! that is not what i was looking for...swen weber first stroke


nope not that either...


nope!


nope not this either... god damn it!

well it looks like i cant find the video... oh well.


good bye!

i had a stoke....

the day after...


this is what i got you here foe..


got it...



okay... enogte,,, stroke talk asid, i really wish i could write...oh well.