No AVM's

Led Zeppelin...

I got nothing for you... NO AVM's...

So I'll give you some Led Zeppelin.


or...


The day felt long. I did not do much.... I did not know what to do... not having a job really sucks.
oh well... maby tomorrow will look better.

Led Zepplelin, Monty Python...

There was nothing on AVMs today... I put a load of books up on eBay...
and now I am looking at youtube...


Led Zeppelin: The Song Remains The Same Trailer

The Song Remains the Same - Led Zeppelin


Dread Zeppelin - Immigrant Song
What the F'


Robert Plant Coca Cola Ad
A COKE AD!!! WTF!


Who Do You Love, Baby?

ok a little better... not much but some....


and now for something complete different....

My email...


Monty Python - Argument Clinic


Silly Job Interview - Monty Python



Ohh I am going to get my Monty Python DVDs out...

AVM News and Me Too...

not me... another form of AVM.

Latest Medical Report 13 May 2009

See below.

My medical treatment is now only a daily tablet of low dose aspirin.

_________________________________________

The recent CT of the abdomen and pelvis (20/3/09) demonstrates that the lesion related to the left iliac arterial and venous system is a pelvic arteriovenous malformation. This is a congenital lesion that given this man's duplicated renal system (left-sided !VC), represents congenital variant in his venous anatomy.
The AVM is an incidental finding. There are real risks related to treating the AVM related to embolisation, both locally including to the sciatic nerve and distally to the peripheral arterial tree. At the moment there appear to be few benefits in treating the AVM. Mr Fry is asymptomatic and there is no evidence of distal embolus or circulatory compromise. The AVM in itself does not represent a problem as a space occupying lesion.
At this stage as the risks of treatment outweigh the potential benefits I believe we should adopt a wait and see approach before we intervene in treating the AVM looking for evidence of local symptoms or distal embolisation.
The second problem for this man is his chronic aortic dissection. This is stable. The only ongoing potential clinical problem would be aneurysmal degeneration of the false lumen. This can be well monitored with yearly imaging. Similarly, yearly imaging would monitor the AVM. As such a yearly angio CT looking at both the abdominal aorta and the left-sided pelvic AVM would be reasonable. I have given Mr Fry a form for his next imaging.
The only other issue for this man is the resolving DVT in his left leg. As I have mentioned in my previous letter, given the fact that the thrombus has essentially resolved and the d.dima level is normal, it would be reasonable for this man to manage his venous thromboembolism risk with long term low dose Aspirin rather than Warfarin therapy. Mr Fry has a pair of surgical compression stockings. At this stage he should wear these for symptomatic relief. From my point of view I look forward to seeing this man again in one year.
DAVID HARDMAN

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and of course...

Happy, no matter what!

Hey Friends, Family and/or Prayer Warriors!

As always I want to say how much it means to me to have so many of your prayers! I am very blessed and that is what helps get me through my work days, my procedures, the bleeds - everything I endure! There is always that darned pain! Hmmm... I guess I should start w/the latest news and go backwards? I'll probably jump around and confuse everyone!

At the end of my work day Friday I was soooo happy! I just could not believe another week had gone by and I've got TWO DAYS to spend with Hanz and Mark! (Like Mark says, notice the pecking order)! My baby Hanz is so adorable and unbelievably cute! Such a winning personality! I was showing one of my friends @ the main office Hanz' photo and she could not believe when I told her that he drags that duck that mom gave him for Easter everywhere! Hanz grabs the duck, looks @ me and then starts running around the house with it, so I'll chase him! Most times, he's too quick, so he'll wait for me to almost catch up to him, before he starts running off again! I can only go "round the dining room, through one bedroom and the hall" about 5 times before I just poop out! I tell Hanz, "Mommie is too told for that"!

Oh! Back to my stuff! Well, we were up late Friday night, so I was waking up about 8:30 am on Saturday. Soon as my eyes opened up, my first thought was, that I would go get Hanz and bring him back to bed! My neck felt wet, so when my hand touched that area, I could pretty much tell I would be seeing blood. Yup! So as usual, I go, "Mark, I'm bleeding"! As usual, he goes, "You are kidding"! So we start the drill! I was dripping blood on the way to the bathroom, and I got my dressing off my face and I could see where it was bleeding from. Mark had just pointed out that area the night before when we was changing my dressing - saying that the very same area looked like it would be giving me trouble! Actually, soon as I removed the dressing and put some pressure on the area, it stopped bleeding very soon! Mark cleaned the area and redressed it and we just went about our business! I ran a couple of errands, then came home to spend more time w/my two favorite people! Later that night, I grabbed Hanz and he and I headed off for bed! Mark, I knew would be falling asleep on the couch, which he did. About 1am I heard or felt something, so I turned the bedside lamp on. I saw Hanz was up and looking @ something on the bed. Hanz had thrown up, poor baby! I looked @ it and apparently he had eated some gold threading from one of the cushions near where I had my Build a Bears, Saba and Rulon! Hanz is always wanting to get to Saba, and I'm sure that tassle w/gold threading caught his eye! Hanz is like having a toddler around 24/7! We have to watch him and everything he puts in his mouth! Course we had to change the sheets, but he ended up sleeping w/us that night all the way through for the first time!

Anyway, it's late and I'm gonna wrap this up soon! Here is a photo of the dinner my sister made for us on my birthday, May 1st! She made arroz con pollo (chicken w/rice) and mom made tortillas!

My next trip to Denver will be June 10, 11 and 12th! I need to be doing some exercises to make sure my mouth can open wider or the anesthesiologist is threatening me w/a trach! Yikes! As always, thank you all so much for all your love, support and prayers! Could not do this without you!

Don't forget! If you get a chance, check out my buddy Shalon's blog and website! She always has great stuff on there and she's adorable! You can get to her sites from mine!

Love to all!

Cyndi

Oh! I almost forgot to tell you about something that happened the other day @ work! I had gotten a call from a lady that had been there before w/a defendant. She is his caregiver and being in the medical field, she was interested in learning more about my avm. Her name is Julie Ann - and she came into the office again and surprised me w/a nice gift! She gave me a wooden box that opened up, and inside were a couple of things! One was a silver compact/pillbox and on the cover of that it says, "Being normal is over-rated"! There are also little slips of paper in that box, that Julie Ann says when I meet an obstacle in dealing w/my avm, I should write that on one of the papers and pray about it. She herself put some wooden letters on the cover of that wooden box that say, FAITH BOX and it also has a red heart on the front of that wooden box! Julie says she was so impressed with my great outlook on everything in dealing w/my avm, and she was moved by my blog and all I had written! Wasn't that sweet of her to come by and tell me all this! She is really nice and wants to help me in any way she can! I tell her that is one of the reasons I have this blog - to help people know what someone w/an avm goes through on a daily basis! So that more people can understand what having an avm is all about!

ain't she a hoot... from
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I don't know why... but I have a real thing for Led Zeppelin. I guess it is from having a brain AVM.... :-)

Yes for those who are just joining us... I have a brain AVM. It first showed it self in 1999 (i think) with a bleed.. from there I had Gamma-knife surgery... I was told it was goan... I had regular MRI's every 6 months and then every year. (time flew by) Until summer 2004... when it popped! I was damn near killed... I have very little memory of the next 6 months. In fact I have very little memory since... I was fired from my job... I used to be a Manager at Nordic Products. (A Hot Tub Manufacture) I made an okay living... $54,600/yr. I was given SSI... to the tune of $1500 per month... after I deduct my medical insurance I get $1400... I, with my wife's help, have gone through my life savings... About $70,000. I don't know what's going to happen... but it ain't gonna be pleasant...

So excuse my idiot tendances as I try to get my ability to type back... and my ability to remember what happens one minute to the next... I would normally say "help me right here... but what would come of it.

Here have some youtube...



Dazed And Confused - Led Zeppelin (Video)






I don't know if this will save or not...
Well see ya.... later.

got a avm news... and me too...

Losing normal

Son's Successful battle with rare, often-deadly brain condition strengthens family's bonds.

I can't go to any more basketball games," 10-year-old Christopher Banks said, teary eyed"Why not?" his mom wanted to know.

He pointed to his head, shaved for surgery with a still-raw incision marking the spot where doctors had removed the tumor from his brain. "Because of this."

Kim Banks looked at her son. For almost two years, she'd waited for a moment like this one, a moment when her son faced a challenge she could help him with without consulting specialists, without undergoing tests, without traveling halfway across the country. Here was a problem she could solve....
read more...
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if you want a new look buy a book...

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okay wassup with me... nothing really... I had turkey for dinner... and I may be allergic to it... i mean i am really sick... so i'm gonna make this short...

i have a friend who loves my photos.. so this is for you...

okay there you go... pics of me... i don't know what you see in me...

Led Zeppelin - Black Dog - Rare Acoustic



After hearing the lovely fake that was a youtube I thought I had better put some led zep on... go ahead and buy something... or don't.

I'm gonna leave.. see ya!
R

From Kansas City.... AVM Story.

Hello fellow bloggers!

I find it strange writing and not really knowing if anyone has found us. My hope is that when someone finds out they have an aneurysm or avm, or a family is suddenly thrust into the chaos of a sudden rupture, they can find our blog and receive information and comfort. I think one of the first things you do when you are confronted with this, is to go online and research. It really is amazing what is out there and I know from personal experience that it does help to be able to read and research. I have found great comfort in several of our websites listed here. Sometimes just knowing that someone else is having the same issue or problem is helpful. It's good to hear what someone else might be trying to help.

I asked Terry last night how he felt his recovery was going. It has been 16 months since his rupture. He told me that he thinks it is going to take a lot longer then he thought. I told him that I would just like to see him at least start trying to do at least one thing every day to help his brain heal. I have bought crossword, find-a-word books, saved brain games on the computer, etc. but he has a hard time remembering to do it! He still is very fatigued most of the time. Last night he wanted to have an italian sausage sandwich. He used to make this all the time and I have never made it myself. He was in the kitchen for hours, but he did a great job! It is the first time in 16 months that he has actually started and finished a project! He did lose focus a couple of times, but then he got right back in there. Of course, I don't think he actually ate any of the italian sausage but he made it!

I'm a little nervous about speaking at the stroke recovery compendium this week. They just want me to tell them about our support group and how we started. I am hoping that by doing so that it will get the word out to more people. At our last meeting, a woman came and told us that she has known for a year that she has an aneurysm and is still trying to figure out what to do. She is older and already has some weakness on her right side. She is so fearful of something happening during the surgery. I can't blame her because I remember feeling the same way! It is such a hard decision to make. Of course, if you have a rupture, there is no decision. I remember that I could not have my aneurysm coiled (a much less invasive procedure) because the neck was too big. Now, after 8 years, I can say I am happy that I had it clipped and I don't worry about it at all (well not too much any way!).

Until next time - take care - come back!

--Nancy

from....really go check them out!!!
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They also have several other web sites bookmarked. A real plus to those who have had one... and those who take care of us.

I had an interesting day , yesterday.
All day long I felt sleepy... took two naps.
Got ready for bed at 9:00
What happened next... well lets just say I did not like it... it was a flu???

I felt like I was going to die... yes die... (needles to say... I did not)

It was kinda weird... I had good old thumping in my brain case... double vision... partial paralysis... today I wake up... and feel fine. Strange.... very strange.

I know that I should tell my wife. but I don't think I am going to... she is more involved in her neck surgery. (And getting pills... she is an addict.)

So here I sit... wondering who I should tell...
and playing some youtube for you...


Led Zeppelin - Stairway To Heaven


Led Zeppelin-kashmir


Dazed And Confused - Led Zeppelin

if you want to buy some Led Zeppelin...


That is that... see you tomorrow...
Peace out...
R

A definition... and a bit of me.

just a definition...

~What is Arteriovenous Malformation?~

Arteriovenous Malformation (AVM) is the abnormal collection and tangle of blood vessels in the brain. Though present at birth, it is not hereditary. AVM is not dependent on race or sex. Strokelike symptoms can be experienced with AVMs because the brain is not able to get teh oxygen from the blood that it normally would.

~Symptoms~

Symptoms leading to the diagnosis of AVM vary with each person. Seizures and headaches are common symptoms with AVMs. Symptoms usually do not appear until people are well into their 30s. Sometimes AVMs are not even diagnosed until a person is elderly or even after death. AVMs can be diagnosed via a CT or an MRI examination of the vessels in the brain.

~Treatments~

Arteriovenous malformaitons can be treated with embolization, radiation, or surgery. Embolization, stopping up the vessel, is said to be the safest and most effective treatment for AVMs.

from...
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Go take a look at the last one... Trash Bags??? (I don't know)

I am fuming... I went to work, and got Fu%Ked by a road sales rep... I am supposedly get all of the ups... this douchebag took a phone up... wiche he sold... and then the rotten guy did the paperwork had the guy come in and signe it... did not even give me a chance.

I am mad as hell!!!

Anyway I feel the need to youtube!



Pink Floyd The Wall Flower Scene What Shall We Do Now


Led Zeppelin-kashmir...the real video

okay my having a headache ass is going to bed...


good by...

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!
Signed,
Hope

from.... go visit... I mean it!
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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.

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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...

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

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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
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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.


LED ZEPPELIN GOING TO CALIFORNIA
with band...

okay I should let you go... Peace,
R


I had ta do it...see ya'

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.

*Symptoms*

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...

from...

Today is going to be definitions day...
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Definition number two...

AVM

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 www.brain-aneurysm.com

that one is from here...

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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 AVMsurvivors.org 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 AVMSurvivors.org. 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!!!

from...
You go girl!!
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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 http://www.avmsurvivors.org/
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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