This is just my little place in the world to blog about whatever comes to mind. I plan to review books, movies, music, bands, bars food and restaurants, along with my wife, step sons, marriage past and present, anything is fair game! and AVM's
cerebral arteriovenous malformation (AVM) is a congenital disorder of blood vessels within the brain, characterized by tangle(s) of veins and arteries. While an arteriovenous malformation can occur elsewhere in the body, this article discusses malformations found in the brain...
read the rest... -------------------------------------- now youtube...
Enact health care reform; it’s the right thing to do
To the Editor: Cumberland Times-News I am 40 years old and I have returned to college to pursue a bachelor’s degree in social work after spending 20 years in the culinary field. Unfortunately, the employers of the restaurants I worked in (mostly small business) were unable to provide adequate, if any proper health care.
In 1995 I was diagnosed with an AVM (arterio-venous malformation) and was hospitalized for three to four weeks and underwent two stereotactic...
Findings: Huge vascular mass in right cerebral hemisphere which is composed of serpigenous signal void vascular structures, multiple feeding arteries (arising from both anterior and posterior circulation) and draining veins (draining into the superior and right lateral sinuses, vein of Galen and straight sinus)
When will they come out with a cure... ------------------------------- That's it for AVM's today... not a bad haul... I have made a decision... <---- I can't spell it (thanks yahoo speller) but I made one none-the-less. I am letting my house go behind... God I hope it's correct... but I don't know what to do... shy of hanging myself (kidding) I am going to keep all of my money makers open, for as long as I can. okay enough of that sad sad stuff... youtube... EliteXC: Heat - Kimbo Slice Vs. Seth Petruzelli
I won't tell you how it ends... but ouch! and now one for the ages...
I just wondered if there are any brain surgeons out there who might be able to tell me what the treatment choices are? Its a mid cerebral berry aneurysm. Im hoping surgery will be able to resolve this. Im very worried about her. She is seeing her neurosurgeon on Friday. Thanks in advance to all answers... read it here... ----------------------------------
---------------------------- There you go... good bye for now...
Brooke VanAssen can't do many of the things other kids her age take for granted: scrub her teeth, roughhouse, gnaw at the inside of her cheek or absent-mindedly pick her nose, as all children do but never admit.
Me.... I cannot believe it... I am in bed for the day. This AVM is driving me nutz! and I know that it is not getting better. I want it to bet better... damn it. I have a bit of a headache... okay I admit it it is a large headache. but because you come here... (okay I admit it because I like it) I come here and spray my feelings out.
Ha, so much for the new approach. You see how that worked out. I went even longer than the last time without a post... However, this time I have something to write about. If for no other reason but to get the thoughts out of my head.
On June 25 2009, I got news about Michael Jackson's demise just like many of you. I took that news rather hard because I grew up to Michael Jackson and his brothers in the Jackson 5. Now usually given a few years I would struggle to remember that date. However this date I am sure to remember because not only did Micheal die, but it was the day that I found out that I had a brain AVM which had bled. more... --------------------------------------------
go ahead... give it a try! ------------------------------------------ Orcas woman undergoes brain surgery
Orcas resident Theresa Howard was rushed to the hospital in Anacortes for a very severe migraine headache on Friday, July 17.
She had been suffering from the headaches for more than a week. Upon arrival at the hospital, she was transferred to Harborview Medical Center in Seattle. She was diagnosed with a condition called Arteriovenous Malformation or AVM. It is something she was born with and affects around 300,000 people a year. Most live a normal life and don’t even know they have this abnormality....
more... ---------------------------------- Go read some stuff... it might even surprise you...
I thought I would go for a Literary theme. I after all do have some books right now that are up for sale on ebay.
click here it is my eBay page... shows all of my eBay things...
It's funny that I am selling stuff on ebay... There was a point that I said "I cannot sell stuff on ebay... my stroke was too big." But yet there I am... selling things on eBay... my typing is getting better... I still have some mis-spellings but I am there.
I think it's funny that I cannot get a job... I mean a real job... They get one look at what my stroke has done and instantly they will call me (don't call them).
I really pissed me off the first hundred or so times.
I can not believe that the government dose nothing (besides Social Security) for AVM persons... I just does not make sense to me. I guess we just do not make up a voting block large enough. F&CKERS! So I welcome you to bid on eBay... it could make my day.
An artery is a blood vessel that carries blood that is high in oxygen and nutrients from the heart to nourish other parts of the body. The walls of an artery are very elastic as they are meant to withstand high pressure as blood is pumped out of the heart. The arteries gradually become smaller and smaller as they get out to the tissues until reaching the capillary bed, which consists of tiny, thin-walled vessels, where oxygen and nutrients exchange with carbon dioxide and waste products.
The blood then continues into the veins, blood vessels that carry blood back to the heart. Normally, as the high-pressure arterial blood is pumped through a capillary bed there is a gradual decrease in blood pressure. The walls of veins are therefore not as elastic as arteries as they are not meant to carry blood under high pressure.
In the brain, the veins drain blood into venous dural sinuses (not to be confused with the air-filled sinuses in the facial bones that are often associated with sinus infections, etc.). Venous dural sinuses are folds in the dura mater (lining of the brain) that collect blood and then drain into the internal jugular veins that bring blood back to the heart...
I continue my brain surgery narrative, reflecting on how I and my friends and family coped with learning about my surgery. Someday I will be clever enough to put a little thingy on the margin of my blog to redirect you in case you wanted to read from the beginning. And I’d compile all the brain surgery blogs in one place. That would be really clever. Sorry, I’m not there yet. Here’s the beginning of them.
My mother did not deal well with my impending surgery. What would “dealing well”... read the rest...
I feel he will do excellent. --------------------------------
--------------------- Okay, I know that one of those is not a book on AVM's... but it was there.
My day... it was busy this morning. I did not do anything... that counted... but it was busy. Got a headache around 2:00... got a quick nap in and woke up without it.
I slept until 3:00 or 4:00... now I have some computer stuff to do... Good bye. R
80's music...
Madonna.
There I got a couple that weren't in the video. Here try yourself...
It's been raining almost constantly here for two days now. The air pressure is causing head and body aches. I guess I'm gonna have to admit to aging at some point...but not quite yet. There's a lot more going on then just the normal aging process but it's not something I really discuss much. People who know me well know bits and pieces but I rarely just lay it all out there when it comes to my health issues. I've been that way for many years now...intensely private when it comes to sharing that information in any but the most surface of ways. I've been thinking a lot about that recently...thinking about why I'm so tight lipped about it...
Jason Napier, who sought fame before undergoing life-threatening surgery for a bleed on his brain, has had a successful operation.
Napier had said the one thing he wished for before he underwent surgery was to become famous, saying he had always craved the spotlight.
So he set up the Make Jason Napier Famous page on social networking site Facebook, which when he began nearly a month ago, only had about 100 followers...
Thanks for checking in with me, I really appreciate it! So much always going on! Last week Mark had taken time off work, so I had really enjoyed having him home - so many honey-do's for him! It was nice having Mark and Hanz drive me to work and then both of them picking me up in the afternoon!... more here... yep... it is Cyndi's blog... give her a read.... =================
-------------------------------- Don't ask me, why those books have a $0 buy? 'Caus i don't know.
Same stuff going on today... so I won't bother you with it.
Absolutely nothing to report.... from the ol' AVM news.... anyway.
I am writing this at 5:40 am.... but it has been a couple of days with Nothing to report. so I guess you could say "Hooray!" For those who do not know... AVM = Arterio-Venous Malformation.
I have one... it popped(3 times)... In my head...I basically had a stroke... It left me basically paralyzed on my right side. My leg made good strides in therapy... my arm did not. So today I have some movement in my leg... my arm basically just hangs there. (don't get me wrong... I have feeling in my right arm... I can move it, all though it is limited to your just up and down type movements.
My selling is terrible... Thank god for spelling check.
I wanted to let you know that my second film, Life.Support.Music., is going to be broadcast nationally on PBS tomorrow night (Tuesday, July 7th). In some areas (LA, Boston, Philly), it's airing on different days next week. You can check your local listing here .
Specifically, the film tracks a fantastic New York musician (Jason Crigler) as he remarkably recovers from a devastating (AVM) brain injury...but I think the film speaks to anyone facing a difficult medical crisis. For more information, here are the links to the PBS site and the film's web site:
"Transcends one's perceptions of medicine, music, and even miracles" indieWIRE... more.... ---------------------------------- That's great! go show him your support...
------------------------------- I am having to sell my house... I hope it goes... but I don't know where we are going to move... faaaaack!
What’s the first thing you do when you get a new medical diagnosis? Or even before you get a definitive diagnosis, but you suspect something is wrong? Or someone mentions some illness to you and says you might have it? Or you keep noticing a distinctive symptom?
That’s right; you google it.
The internet can be a dangerous thing in the hands of a fearful patient. The medical community used to keep people in the dark “for their own good” when they had cancer or other life-threatening diseases. The god-like doctors of that era have been replaced with patient advocates and rehab settings where we ask patients what their goals are. So while being informed and educated about your disease can alleviate fears, and help patients feel in control of their health, it can also be very dangerous. Being in the dark has its benefits. In an internet-accessed world with webMD at our fingertips, no one has an excuse to be uninformed about his/her health.
After I had my diagnosis, I still had months to stew, months to wait for my June 21st surgery date. I was at the time working as a preschool assistant teacher. The kids went down for a nap after lunch between 12:40pm and 2:30pm. The lights went down, and the kids actually slept. There was very little I could do, sitting there in the dark. Sometimes we tried to prepare for art projects, but next to the quiet breathing of preschoolers, the sound of cutting construction paper, or sorting beads magnified in the darkness. We had blinds on all the windows, and a black-out curtain on the door; even the bathroom light was off. There was no way to read, to journal, to see knitting stitches – not that I could knit – so I turned to the computer each afternoon.
I learned about my treatment options, the incidence of AVMs, the possible outcomes – favorable and disastrous. While statistics on the prevalence of AVMs vary greatly (from 5 to 613 per 100,000), by some estimates, AVMs are as common as cerebral palsy. Yet no one has ever heard of an AVM. They’re about 1/6 as common as aneurysms, and people have heard of those. I knew it wouldn’t be likely to find an AVM support group in on-line, let alone in person, and I needed to distract myself from statistics such as “4 in 100 people with AVMs will have hemorrhaging strokes in a given year”. I had 2-3% chance of bleeding each year. The mortality rate from a initial bleed is about 10%, and this increases with subsequent bleeds. I needed to stop thinking of my AVM as a time-bomb. I started referring to the potential hemorrhage as “blowing a gasket”, hoping to inject some much-needed levity into the situation. It didn’t work. My mother still couldn’t use the words “brain surgery” to talk about what was happening.
One day, while the children in my care were dead to the world, I found a website hosted on generous bandwidth by the University of West Georgia by a man named Bill Maples. (http://stu.westga.edu/~wmaples/aneurysm.html) This is a data-free site. It is a support network for families, friends, sufferers, and survivors of AVMs and aneurysms. It consists of narratives written by the very same folks in need of support and camaraderie. I latched on dearly. Too many stories ended in the death of a loved one, including young children. Too many stories chronicled the ongoing struggles faced by people discovering new neurological deficits and unending complications caused by the AVMs and aneurysms.
I sat down that May afternoon to compose my own narrative. What follows is an excerpt from my AVM narrative I titled “My Summer Plans”:
School can be both a respite and a dangerous place for my thoughts about my impending surgery. While I’m active, I have virtually no down time, and I have to devote all my energy to the school day of a three- or four-year old. They captivate me from about 7:55am until 12:40pm, and after they’ve all brushed their teeth and used the toilets, they hit their nap mats. They get ready to slide into dreamland for about two hours, and I’m left to my own devices, since comatose children require little or no upkeep. And while I’m here, listening to their soft breath, quiet lullaby music, and the gentle whirr of the computer, my own mind has time to wander. Though my work here allows me to escape the reality that goes beyond the innocent thoughts of a preschooler, I still dip my toes in the Real World. The phone rings and it will be Evelyn from Dr. Zager’s office, scheduling my fMRI. I will scoot by second grade and think about Danny, son of the famous vascular neurosurgeon who will slice into me this summer. And sometimes, all it takes is some idle time in the classroom. Two hours is a long time to read, or work on any project in the dark on 18″ preschool tables. It’s even long to stare at a computer and do mindless e-mailing and google research about foam cheese hats. All I need is to type “AVM” into google, look at my daybook and see some medical appointment scrawled in. It all comes racing back.
I will include more from this narrative in the next post. I would rather include it as “source material” than paraphrase the key plot elements, because it captured the fear and uncertainty of what lay ahead in that moment. I can reflect from the other side of surgery and recovery, but it won’t be as real as it was that afternoon as I sat, crying into the keyboard as I typed in the dark.
--------------------------- as for me... I suck.... I don't have anything to add... here have some youtube...
Elton John-Tiny Dancer
and that brigs up Kathy Wyatt... I thought I had a connection with her... but for the last several months I got nothen...so if you have seen her... tell her I have been thinking of her.
Perhaps I should back-track and talk about how we arrived at brain surgery as The Choice. All the websites and the research I’d done on AVMs thus far yielded 3 options on AVM treatment: embolization, radiation, or microsurgery. Because each AVM is unique in size, location, and involvement of blood vessels, and because each patient is different in age, ability, and health status, no two AVMs can be approached in the same manner. Some are completely inoperable, while others are relatively easily corrected with little side effects. It all depends. That’s where Dr. Zager came in. Dr. Hart could diagnose me, and even tell me the options that were widely available, but it was Dr. Zager’s expertise that allowed him to look at my MRA and MRI scans and say I needed brain surgery. He also said that embolization would be used in conjunction with the craniotomy.
--------------------------------- Me: I forgot my medicine one night. (anti-depression) I felt off... and today I am super sleepy. I am trying to catch up.
It is a shame that I am dependent on these... oh well... now I give you youtube...
How are you? My brother-in-law Jim was just saying that he thought I was doing pretty well, since I hadn't written anything on my blog! Unfortunately I've just been dragging and apparently too drowsy to sit and write! I've been having some problems controlling my pain these days and all the meds I take make me very sleepy! The area near the hole in my ear is really looking bad - very scabby! I haven't been able to get in to see Dr. Zane (ENT) because he is on vacation! He would be debriding the scabbing. I've had lots of drainage from my ear too - goopy stuff, ugh! Gross! Yes folks, this is my life right now! I also haven't been able to see my favorite nurse, Noel @ woundcare because of some changes in the office he works in! Went in a couple weeks ago to find that Noel could not see me, because he only worked for the other doctor in that wound care group! Needless to say I was extremely upset! I was able to switch to the other doctor - but when I arrived for my appt. the following week - I was told Noel was on vacation, so I left! Well now the new doctor I was going to see was upset because I left and now she refuses to see me! The former doctor I was seeing agreed to see me, but now I'm being told that I cannot be guaranteed Noel and I may have to wait until he sees all his other patients, before he can see me! Not sure how that's going to work out, but we'll see on the 2nd of next month!
Yesterday, I did water therapy for the very first time. Jay and Cousin Natalie came as a way of showing support. Sadly, the same issues that plague my body out of the water plague me in the water. There is one notable difference: the consequences! If you fall in the pool, it does not matter as much! I am so excited to keep up this therapy and get closer and closer to my ultimate goal: TO WALK AGAIN!
Putting on a swimsuit and getting in a pool were amazing. The last time I was in a swimming pool was the Friday (April 18, 2008) before my AVM rupture on the 21st. Jay and I took James to swim at Pepperdine’s pool. It was one of his first times to swim, and he loved it. Interestingly, right after we were done swimming, I felt incredibly strange and very faint and I almost couldn’t walk. It quickly passed, and I didn’t think too much of it (an allergic reaction?, morning sickness again!?) but now, I know that it was the beginning of my AVM rupturing.
That could have easily been my last time to take my baby swimming. James loves the water so much now. My mom takes him swimming in the pool at her apartment in LA, and he cries when he has to get out. I now feel like one day, after I get more stable in the water, I can experience that joy with him again. There is something so healing about the water to me. I am so happy to be back in it again!
So I guess what the doctors thought to be an AVM is actually stroke lesions. Barrows sent me over to a cardiologist thinking it's probably heart related. All the episodes I have had were really TIA attacks(mini strokes)!We just don't know yet what's causing them. Other than all the medical stuff we have been really good:) Hope everyone is having a gnarly summer;) xoxoxoxo!
----------------------------------------- different I don't know about Books on eBay.... the couple I got and expected to go over... did okay.Then did not do what I wanted... but they did okay...
click here it is my eBay page... shows all of my eBay things...
I feel bad for the person in the blog above... but it sounds like they got there one way of dealing with it.
okay enuff dealing with that... youtube on the way.
Monty Python's best sketch ever.
I have a copy of Quest for the Holy Grail its F'n Funny!
You'll Be In My Heart-phil collins
and finally....
Phil Collins Farewell Tour - Drums and "Take Me Home"
Well we are back at home and all is well. Matt had the radiation surgery today. Poor baby, when they were trying to start the IV they had to stick him 5 or 6 times. Finally, they got the IV started and things got better. Matt was very nervous about having the halo put on this morning, of course who wouldn't be nervous having 4 screws put into your skull. Anyway, they got all of that done and he went in for a CT scan and to have an angiogram done. The neurosurgeon that has been working with Matt came out and told me that the AVM had grown a little bit, but that he expected it to do that. The AVM went from about 1cm to 2cm. He told me that it was very treatable and that the radiosurgey was a go for today.
Matt went to recovery and then back to the floor. We waited for the doctors to form their plan and then at 2:00 they took him to do the actual radiation treatment. They give the radiation in 5 doses, and it took about 30 minutes. After that they took the halo off and we were on our way back up to the floor for them to discharge him. The radiology oncologist came out and talked to me and said that all had gone well and that now we are in the waiting part of the treatment. It will take a year or so before they can tell if the radiation surgery worked or not. What they are hoping for is that the radiation will cause the blood vessels that are feeding the AVM will get scar tissue on them and that they will essentially die. They will keep an eye on him for the next couple of years to make sure that all is still going well and that the AVM is not growing anymore. The oncology doctor told me that the way that the AVM is positioned that it had actually moved the good brain tissue out of the way and gave them a much better line of fire for the radiation. By this happening there is less a chance for the radiation to damage the good brain tissue. Once again we are seeing how awesome our God is and that He is still in control of this situtation.
We have been so blessed by having great doctors, but we also know that our Lord is the one that is giving those doctors the skills and know how to do what they are doing. I am so happy to be writing this and so happy to be telling you about how wonderful Matt is doing. We came home and Matt helped unload the car and carry stuff in and he was back to doing his normal stuff as soon as we got home. He told me that he was not going to let a little bit of pain from the screws in his head stop him from carrying on with his life. Matt just got finished eating a big bowl of chili, so we know all is well!!! Please continue to pray for Matt and that over the next year that God will continue to do the good work that He started. We are looking forward to the day when they look at us and tell us that the AVM is dead and not drawing blood to it anymore. Thank you for all your prayers, love and support it has been a long year and we are so hopeful about what the future holds for us and all the glory and thanks go to the wonderful God that we love and serve. from here.... -------------------------------------
LOS ANGELES – Farrah Fawcett, the "Charlie's Angels" star whose feathered blond hair and dazzling smile made her one of the biggest sex symbols of the 1970s, died Thursday after battling cancer. She was 62. more here...
I know some of you are going to go ape-shit over the playboy for Farrah Fawcett... I guess I just want to show people in there good times...
youtube...
Buggles...Video Killed the Radio Star
Wall Of Voodoo - "Factory"
'Til Tuesday - VOICES CARRY - Live 1985 Aimee Mann
Thank You, know that by giving me a small donation you have made a happy man.
I have had an AMV, a head bleed, and now have only my left hand to type with. I try. If you think that I try, please give.
