Friday, March 27, 2009

ahhh nothing!

Thar is (happily)no a thing to report of in AVM land.

I have had a headache most of today... I am really tired of this... but oh well...
So do you want some more Led Zeppelin...or some more The Door's hmmm decisions, decisions...

oh well why not both...

Dazed and Confused...Led Zeppelin

The Doors - The end

There that's about something to buy...

I'm sorry I don't know why I'm here... nothing going on in my life... other than I work for free... a day a week... the rest of the week I sit here and fiddle fattel around with this damn computer... ahhh I should not have shone up today... do me a favor... read the next few page... there are some really good AVM stuff... and us with them would like you to know... my wife is home... i gotta go...

Thursday, March 26, 2009

Doors and stuff about me!

Doors... thought I'd give you something different ...
There is no avm news... yet.
maybe later...
Wife: She seems to be feeling better... slightly. The neck surgery, I still am not sure of... we will see.

I have been thinking about not putting amazon links on my page... but they have been providing an income... sure it is small... but it is an income.

What do you think?

I am suppose to go help a couple get a hot tub, Saturday. I will get a commission. I think I am going to take it...

oh well life is fun when you got half a brain.

I could not resist...

Wednesday, March 25, 2009

AVM News... plus Led Zepplin... But but spelled different

Riding the Doctor Merry Go Round on a Horse Called Hope

I may have avoided updating this blog for a couple of months. I think I lost hope and faith that I would begin to feel better or that any one of my doctors were listening to me or helping me. I had hoped to have another baby back a year and a half ago before my health went south. I was very sad. I had nothing solid or enlightening to share on the subject of my health. Everything was the same for so long and I felt like I was beginning to whine and I can't do that to anyone who actually takes the time to read this crap. I HAVE TO REMEMBER THAT THIS BLOG WAS CREATED AS A MEANS FOR THOSE WITH AVM's & ANEMIA TO FIND AND SHARE INFORMATION. If anyone is frustrated and at their wit's end for information about these draining conditions, and if I have helped in any small way, then I have served my intended purpose here & am trying to help by sharing my little nuggets of experience and wisdom.

As previously posted, I spoke about the good health and happiness connection, about my slide downward with my health again, having tachycardia and weird heart arrhythmias. I was since placed on a drug to regulate my heart rate; a beta blocker. Theories are that my heart was stressed and was beating too rapidly along with irregular heart beats...a short circuit or misfiring. Well, no kidding it was stressed! My heart was trying to pump blood it did not have enough of through my anemic body. It just blew a circuit I guess. And, admittedly, stressors in my life did not help matters. It is amazing that certain health conditions and people can actually stress your heart.

I am better now. Back on the horse and hopeful that I now have doctors who can manage my health issues in a timely and correct way. Now I am trying to get medical clearance to try to get pregnant again through in vitro. The heart thing is better now and I have since been pumped up with intravenous iron....ALOT of it. I sat for 5 hours (drip, drip, drip) while my body sucked up much-needed iron. This brought up my iron stores which were literally rock bottom, while allowing my body to start making red blood cells to up my hemoglobin which was really beginning to slide. FYI to those who have received or will receive intravenous iron therapy: if you receive 2,000mg of iron or whatever dosage, you may experience side effects such as I did. For three days I had deep-bone pain after my IV. I have never ached so badly in every bone and joint in my body--I mean throbbing, pulsing, aching. It was like the flu from hell. Specific pain was in my hips, groin, thighs, knees & shins. I had to phone the hematologist and they prescribed pain medication for me. I was told this pain was my bone marrow working hard to make red blood cells after having been deprived of enough iron for so long.

I also have since had more endosopy and colonoscopy to search for those dastardly AVM's that can be lurking. The doctor could not find anything. That is not to say AVM's are not there. Remember, people half bleed to death like I did and the source of bleeding was not found by the time I was hospitalized. So, I know they could be there just waiting to break open. Is all the doctors could do was give me drugs to clot my blood (which is probably what gave me a blood clot!), transfuse me with blood and that was it. I will soon do a camera pill study for another look, possibly followed by a double balloon enteroscopy, which is a 4 hours or more procedure in an OR under general anesthesia, which scares me. This may occur only if the cameral pill study finds something I believe.

I am stable and feeling much better than I was 3 months ago. If I can remain stable, keep up my hemoglobin & iron, get the fibroid tumor situation figured out and be healthy enough to have that baby then I will be very happy. I have a pretty good hematologist and some new doctors at The Mayo Clinic and am hopeful they will continue to manage my condition for me. I am still on the doctor merry go round as I call it and again, I am hopeful they will make me well enough. In just one month's time I have seen 2 hematologists, 1 cardiololgist, 2 gastroenterologists, 1 internal medicine specialist, 2 gynecologists and 1 obstetrician/fertility specialtist--hence the Doctor Merry Go Round. Wish me luck!

from.... go visit... I mean it!
I am guilty of the Brain thing... I admit it. She has an AVM and wants help... I would offer... but I'm a little F'ed up because of the brain AVM.

...but some of you could help.... go do it.



Why did I post a towel in the "buy something" place... I don't know why but a towel shows up when you put "AVM" in the search box... but when you put 2 l's in "Led Zeppelin" you get nothing.... oh well... time to get funky...

Led Zeppelin-Stairway to Heaven

okay... good by... for now...

Tuesday, March 24, 2009

Got a pair... kinda

Red lips, bloody nose, septic knee.

That’s the patient. He has a long history of a bloody nose for the 7 decades of his life and he has red dots at the vermillion border of this lips. And spiders. Not the arachnid, Mr Parker.

And now he has a knee with rubor, dolo,r calo,r tumor (I have to work the title of the podcast in somewhere). It is tapped and filled with pus and methicillin sensitive S. aureus.

It is odd how when I read an article in a journal and I see a case shortly thereafter. I suppose if I never read, I would never see anything new. The reading causes new cases to appear; I am convinced of the cause and effect.

Patient has Osler-Weber-Rendu, now called Osler-Rendu-Weber, I do not know why they changed the name order since I was a medical student. And the CID article calls it Rendu-Osler, poor Weber is aced out. OWR is congenital form of arterial venous malformations (avm’s), and wouldn’t you know it, they get infections. Brain abscesses and infected joints...

want more... click here


and a second one...

At Least A Visit

It's been a while. A lot has happened, but I 'll restrict my comments to Canada and my brain as much as possible.

Two weeks ago, I had my follow-up angiogram. The coil on my aneurysm is fine, no problems. The AVM is gone too, but the Dr. saw an "early blood vessel." He thinks it is most likely scar tissue, but wants another angiogram in a year just to keep an eye on it. It's nothing to be alarmed about, for certain, not because were it not scar tissue it could be another AVM, but because we shouldn't be afraid of things that can hurt our bodies, but concerned with our souls. So we'll just keep an eye on it, like the Dr. says.
want more.... click here


Okay I admit it... I Led Zep'ed you again.
but They really do Rock!
I am going to work again... God knows why.
I guess I'm hopping for a full time job... with McMinimum Wage *(plus commission)... hopping and hopping...<--- am I spelling that right? (who cares)

so you wanna see some Zep? Okay!

The Ocean - Led Zeppelin
No band... just lyrics.

with band...

okay I should let you go... Peace,

I had ta do it...see ya'

Monday, March 23, 2009

AVM's and Led Zeppelin... huh?

Arteriovenous Malformation

*What is Arteriovenous Malformation?*
Arteriovenous Malformations(AVMs) are defects of the circulatory system that are believed to arise during embryonic development or shortly after birth. The are comprised of tangled arteries and veins. The presence of an AVM disrupts the normal function of these arteries and veins, which is taking blood away from the heart and returning it to it. An AVM can develop in many different areas, but those in the brain and spinal cord can have widespread effects on the rest of the body. AVMs of the brain and spinal cord are believed to effect approximately 300,000 male and female Americans.

Most people with AVMs don't experience any symptoms and they are only detected during an autopsy or during treatment for an unrelated disorder. Symptoms only tend to occur when the damage from the AVM to the brain or spinal cord reaches a critical level. For those people that do experience symptoms, seizures and headaches are the most generalized. Other symptoms include muscle weakness or paralysis in one part of the body, a loss of coordination, dizziness, visual disturbances, and memory deficits just to name a few...


Today is going to be definitions day...


Definition number two...


For this week's pathology blog I decided to talk about arteriovenous malformations or AVM. In the image seen, this patient's AVM, which was not previously known about, ruptured, causing an acute bleed and was subsequently treated with surgery. During this surgery, the patient's AVM was discovered and also surgcially treated.

An AVM is a defect where the arteries and veins of the brain are not connected properly. The arteries and veins pretty much become a big jumble of vessels and of course can't function properly. This causes increased blood flow and subsequently higher blood pressure in the area of the AVM. Unlike an aneurysm, there are no set "risk factors" for an AVM. They are considered to be congenital as most people who suffer from an AVM are born with them.

The most common symptom of an AVM is an acute brain bleed. Other symptoms may include seizures, loss of motor functions, loss of senses, mass effect seen on a CT scan, severe head or facial pain. These types of symptoms are often confused with those of a stroke therefore proper screening is very important!!

Treatment for AVM's vary and depend greatly upon several factors including the age of the patient, the location of the AVM, the size of the AVM, and whether or not the patient is at risk for an acute bleed. Treatments may include surgery, radiation, embolization, or a combination of these.

I found my information at

that one is from here...


Okay I know that Led Zeppelin is a far throw from AVM definitions but hey it is my blog!
Here is one for you...

AVM Survivors Network

As many of you know, this past year was a very difficult one for me. I was in bad shape with my AVM, lots of pain, ugly wounds, crazy bleeding... And I can absolutely say that I am feeling so much better today. The difference between today and one year ago is like night and day.

While my treatment with Dr. Yakes has obviously played a huge part in my improvement, I also know that the community over at has been instrumental in my mental and emotional health. I will be eternally grateful to Ben Munoz for creating the site, and am so vey happy to be a part of this new family.

This morning as I logged into my iGoogle page, I saw that my new friend Scott Orn had posted a link from his blog about Turns out that our AVM support network is featured as Site of the Month at Northeast Center for Special Care.

Our AVM family tells Ben all the time how grateful we are, and how he is the coolest kid around. But it is very nice to see him, and the site he created, recognized by others for the benefit it offers to people suffering from Arteriovenous Malformations.

Go Ben!!!

You go girl!!

Ben is something special... for all of us. Thank you Ben.

Ben gave me a place to vent... and to listen to others with AVMs let me see if I can find my page... hummm can't show it to ya... but I can offer you a look at the page.
go here

some Led Zeppelin for you...
(okay fine it is for me!)

Led Zeppelin Black Dog 1973

Led Zepelin - Stairway to Heaven
and finally..

Led Zeppelin - Black Dog
okay it would not be me if I did not give you something to buy...

and there ya' go... avm's and Led Zeppelin... ya just can't do better than that... can you.

I'm a gonna go... peace out... R

Sunday, March 22, 2009

AVM it is about time... ha ha ha!

AVM Survivors is Site of the Month

AVM Survivors, one of the networks that make up Ben's Friends patient to patient support sites, was selected as website of the month at Northeastern Center. The folks at Northeaster had some really good observations:

"The kinds of tools and applications that enabled social networking sites to change how people use the web are now available for groups that want to build communities based on a single, common topic, and now we are seeing the creation of these kinds of communities; which brings us to our website of the month.

AVM Survivors Network is a social networking site dedicated to individuals who have Arteriovenous Malformation (AVM) and utilizes the social networking concept to provide support and resources for a community of AVM survivors on the web. It utilizes many of the same tools and features that you'll find on MySpace or Facebook.

The site was started by Ben Munoz, an AVM survivor who recognized a need for other survivors to be able to support one another."




Good for him... he deserves it!
Anyone who is even curious about AVM's should give Ben a visit.



I thought today I would end (smile) today with a little Rock and Roll... oh well that's it... for now from the funny farm....