Saturday, July 26, 2008
I guess one aspect of being slightly ADD is that I tend to read multiple books at a time. Strangely, I can do this without losing my train of thought. I purchased an interesting book at Barnes & Noble last weekend called Another Day in the Frontal Lobe by Katrina Furlik, MD. Furlik is one of only 200 women neurosurgeons in the US. She's young, incredibly smart and a very witty writer, too. I read the book in just a couple of days and really enjoyed it.
There were several interesting aspects of the book. I loved the technical aspect of the book. I felt like I was learning something new about an area I knew very little about (the brain). I enjoy all things medical - maybe I should have been a physician - and having been a pharma rep (as well as being married to someone in the pharma industry) I feel well-acquainted with the medical industry. I was also quite amazed at a closer look at the human brain and all that it can do. What an amazing "machine" it is! It surprises me that someone who is so intimate with this incredible gray matter could not believe in SOME type of higher power.
In one of the chapters, Firlik describes 2 patients who both have AVMs or arteriovenous malformations. One type is a "handshake AVM" which is generally not good and called a "handshake" because all the neurosurgeon can offer as you walk out of her office is a "handshake." One of the patients chose to have the operation to remove the mass and didn't fare well (not surprising). Another patient chose to do nothing and live with knowing that it could end her life at any time and did surprisingly well with the mass continuing to grow in her brain. Here's a quote about that that I found very interesting:
"It's clear that the brain can accommodate quite nicely to the overbearing presence of a malformation, but can the mind be trained to accommodate just as well? When inaction is the best action, how do you prevent fear itself from becoming an illness? Does the fear simply wear out, or does it have to be forced out?"
Very provocative, huh? You see if you have to live with something that you know can grow so big that it can take your life at any time, would you be willing to do it or would the FEAR of that growth taking over your brain be a greater disease than the growth itself?
Maybe I live too much in the world of "what if?" sometimes (too much of the time). I'm not very good at resting in the security of God's sovereignty. I tend to be a person of action who likes to take matters in my own hands. I know this is deep-seated for me and goes back to a childhood of living in a totally dysfunctional family. I think I am better at "resting" than I used to be, but I'm still not there and I'm thankful that God isn't finished with me yet. My gray matter has more training.
"And who of you by being worried can add a single hour to his life?...So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." Matthew 6:27, 34
All the People Affected by Cerebrovascular Disease Every Year Could Fill the Rose Bowl 10 Times Over
Stroke is an abrupt interruption of constant blood flow to the brain that causes loss of neurological function. The interruption of blood flow can be caused by a blockage, leading to the more common ischemic stroke, or by bleeding in the brain, leading to the more deadly hemorrhagic stroke. More information is available at: http://www.neurosurgerytoday.org/what/patient_e/stroke1.asp.
A cerebral aneurysm is an area where a blood vessel in the brain weakens, resulting in a bulging or ballooning out of part of the vessel wall. Usually, aneurysms develop at the point where a blood vessel branches, because the “fork” is structurally more vulnerable. More information is available at http://www.neurosurgerytoday.org/what/patient_e/cerebral.asp.
An arteriovenous malformation (AVM) is a tangle of abnormal and poorly formed blood vessels (arteries and veins), with a higher rate of bleeding than normal vessels. AVMs can irritate the surrounding brain and cause seizures or headaches. The most common and serious side effect of an AVM is a brain hemorrhage. More information is available at http://www.neurosurgerytoday.org/what/patient_e/ArteriovenousMalformations_AVMs.asp.
Celebrities affected by Cerebrovascular Disease in the Last Decade
Actor Robert Guillaume, stroke (1999)
Actress Sharon Stone, cerebral aneurysm (2001)
Game show host Bob Barker, stroke (2002)
Entertainer Dick Clark, stroke (2004)
Rocker Neil Young, cerebral aneurysm (2005)
New England Patriots player Teddy Bruschi, stroke (2005)
Senator Tim Johnston, arteriovenous malformation (2006)
Cerebrovascular Disease Statistics
Stroke is the third leading cause of death in the United States. Preliminary estimates indicate that 143,497 people in the United States died from cerebrovascular disease in 2005, a decrease of nearly 7 percent from 2004.
Of the more than 700,000 people affected every year, about 500,000 of these are first attacks, and 200,000 are recurrent.
Subarachnoid hemorrhage (SAH) affects approximately 30,000 Americans every year, with 90 percent of all cases caused by cerebral aneurysms that have ruptured, the latter of which is referred to as aneurysmal SAH.
AVMs affect an estimated 300,000 Americans.
While there aren’t measures one can follow to help prevent cerebral aneurysms, AVMs, and other rarer cerebrovascular conditions, the good news is that there are ways to help prevent stroke.
Stroke Prevention Tips
There are some stroke risk factors such as age, gender, heredity/race and a history of heart disease/stroke that are uncontrollable. However, there are controllable or treatable risk factors which may help prevent a stroke:
If you are a smoker, stop smoking
Maintain a healthy weight
Maintain normal blood pressure and if it is high, seek treatment
Maintain normal blood cholesterol levels through a healthy diet and/or medication if necessary
If you have diabetes, control your blood pressure, blood sugar and cholesterol levels
If you have a family history of aneurysm or stroke, screening may be advisable
If you are diagnosed with carotid arteriosclerosis, seek treatment
If you are diagnosed with atrial fibrillation, seek treatment
If you have a history of transient ischemic attacks (TIAs), seek prompt diagnosis and treatment
Get 30 minutes of moderate exercise, five days a week. Check with your doctor first before starting any exercise program if you have any health problems or have been inactive.
Sixty in-depth neurosurgical topics as well as a variety of downloadable fact sheets are available on the public Web site of the AANS, www.NeurosurgeryToday.org.
Friday, July 25, 2008
I really don't like it at all.
I am sleepy too... perhaps after my nap I'll feel better...
you can check out my other blog..
or hang out here and listen to some music.
I never though of Night Of The Living Dead that way... but hay to each his own.
EMF Unbelievable... thats ok...
Thats much better than ...Don't Worry, Be Happy
but if you must...
and for you who like to dance... I bring this...
ok time for me to say good by...
I really like Margret Weis... If you like Dragons and stuff you will like her too.
I use to have her Email... she is a good person as well.
Thursday, July 24, 2008
Today I have a headache... not a major one but enough to be uncomfortable.
I am thinking of a nap. We'll see.
in the mean time i give you this...
we have Guns and Roses!
now I think it is bed time for me.
AVM from: http://forum.ih8mud.com/chit-chat-section/232454-arterio-venous-malformation-my-wifes-medical-story.html
In looking for info about her condition online, or other people that have it, we were pretty suprised of the lack thereof.
This link will take you to her new website she has started working on. She is on leave of absence right now, and this has been her new project and she is excited to share her experiences with others who have an AVM, as well as educating people about the condition. The website is still a little bit of work in progress, but it is mostly complete!
We're also curious if anyone else in the Cruiser Family has, or knows someone who is living with an AVM?
Thanks for looking.
One of the first things that my neurologist said was she completely disagrees with both doctors! She said she read through their reports and then looked at the actual MRI herself.
ER DOCTOR: AVM, large abnormal blood vessel, follow-up MRI and cerebral angiogram, possible radiation/surgery for AVM - blames the AVM for right sided weakness, headaches,dizziness, etc
Follow-up Physician: AVM, abnormal blood vessel, possible stroke, URGENT follow-up with cerebral angiogram.
Neurologist: AVM is small. It’s also on the right side of the brain which means it cannot be responsible for the right-side of my body. The left side of the brain is responsible for the right side of the body. So even though it’s there - it’s small and not the reason I’m having these problems. The pinched nerve could be responsible for some things BUT it’s also on the wrong side of my neck.
She said that doctors always think that test findings are worse than the reality. Because it’s out of their scope of practice the smallest things look urgent and scary to them. She said it would be the same as if she saw someone who had something non-neurological happening. She would be more anxious about it because that’s not her scope of medicine. She doesn’t like the way the ER wrote up their findings as it’s overwhelming to tell a patient they may need radiation or neurosurgery when they’re not qualified to make those judgments.
Onset of Symptoms in Haiti: headache, dizziness, uncontrollable arm and leg movements, 52 blood glucose level, speech difficulty.
Symptom still present: There is still right-sided weakness, dizziness, severe headache, and mild speech delay
She told me most diagnoses in her field are based off of ruling other things out. The AVM/Abnormal Blood Vessel is not important right now. It cannot be related to these symptoms. She believes that at this point in time there is no need to do a follow-up MRI or Cerebral Angiogram because the abnormal blood vessel is not that large and she believes it’s benign. YEAH!!!!!
Pinched Nerve - The MRI shows that and taking muscle relaxers is a good thing BUT it’s not responsible for all of my symptoms.
Her thoughts were a TIA (mini-stroke) seizure, or complicated migraines. However - I don’t have any risks for it being a seizure and it doesn’t fit the typical seizures that they see.
So that leaves TIA/complicated migraines. They both basically give the same symptoms that I’ve experienced. Doing more follow-up tests to figure out exactly which one it is will result in lots of money which we don’t have and no difference in real follow-up treatment.
So they want to treat the symptoms and see where it goes. I still have these horrible headaches and my head is sore to touch. The headaches are causing a lot of the dizziness and she said that the headache could even be causing the right-sided weakness and speech delay. She said even the low glucose level that I had in Haiti could have caused the extreme tremors and dizziness.
Because TIA and migraines can so closely resemble each other we may not know until I have another episode. She believes that the episode in Haiti was more than likely brought on by stress. She believes that once we treat the headache regardless of why I have it - that the speech, dizziness, and tremors will all return to normal.
I’ve been prescribed 4 different medications including steroids and was told to REST and avoid STRESS! I told her I thought I had the rest thing down and she said - -yes, but it’s important on the medication she’s prescribing that I really don’t STRESS - don’t over-think (HA) - don’t drive - don’t do any heavy lifting - and try to truly relax. The back of my neck is still really tense and so even for the muscle relaxers to work - I need to chill-out!
I told her now that I know I don’t have to have brain surgery - it will be a lot easier to relax! :) She apologized to me again for that!
I just wanted to say Thank you to Monica Reich who spent the last three days trying to call every connection she had here in Lexington. Through her efforts, she had arranged for the new MRI and angiogram to be done for free! She even met me at the neurologist’s appointment today to tell me the great news. I think she was hoping I would need one :) No - I know she wasn’t. But I am so grateful for all her work and I can’t say that I’m sad I didn’t need one! God answers prayers and I’m so happy to not have to worry about that anymore.
Thank you all for your countless emails, comments, and prayers. While the symptoms are still here - it’s so encouraging to know that the worst is over and I’m sure as I start the new medication that these symptoms will just go away or get better.
Jose told me he was afraid something would happen to me and he would be left alone. I reminded him with 5 kids he would never be alone :) I also reminded him that we have more family than any person could ever need!
You will never understand what your prayers and encouragement have done for my family.
WHATEVER I SAY IT WON’T BE ENOUGH BUT……
THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
Wednesday, July 23, 2008
I have very few "friends".
oh well... there loss... ???
have a little youtube... my friends.
now lets see what he talks about.
I wish he was God... i really do... but alas he is a poor man.
Here’s what’s been keeping me up at night and away from the blog….
Back in 2004, my dad had an MRI done for some hearing problems. The MRI nearly killed him because he is one of the few people who is allergic to Gadolinium, the contrast dye that is routinely used in MRIs. He survived the MRI, only to be told that he had a brain tumor.
He was sent to a hospital for a biopsy. Just before taking him in to do the biopsy, the surgeon had a CT scan done. He told my dad that he had good news — what they thought was a tumor was actually an AVM. He told my dad to schedule a follow up appointment and sent him home a happy man.
At the follow up appointment, the doctor suggested doing an angiogram. My dad says that he asked the doctor if it was really necessary and the doctor said no. I personally believe that my dad — being an old fashioned sort of stubborn macho man — decided that the test sounded unpleasant and that he didn’t need to have it. I remember him telling me more than once, “I’ve probably had that AVM all my life and it hasn’t bothered me yet.”
So, nothing was done. End of story. Or so we thought.
About three months ago, my dad started having several seemingly unrelated health problems. His left leg was hard for him to move. He was lightheaded all the time. His vision wasn’t quite right. He saw many doctors — ENT, cardiologist, general practitioner, neurologist, and so on — and had many different tests done. Whenever he told me about his doctor appointments, he would say that the doctors said everything was fine. Well clearly, everything was NOT fine because he couldn’t walk, see, or steady himself the way he normally would. Whenever I asked him if he told the doctor about a particular symptom or past problem, he would shake his head and say, “No, it’s in my chart.”
As a result, I decided to start accompanying him on his doctor appointments. When we had a follow up visit with the GP, I gave her the whole laundry list of what he had been experiencing. She told us she would call the neurologist that he had seen the week before. That was on Monday (6/30). We got a call saying that the neurologist would see us on Tuesday (7/1). We saw him and he informed us that, after looking at my dad’s recent CT scan and his MRI from 2004, he was of the very firm opinion that what we had been told was an AVM was actually a tumor. He referred us ASAP to a neurosurgeon, who saw us on Thursday (7/3).
The neurosurgeon agreed with the neurologist’s assessment, but wanted a closer look. He asked us to get the CT scan from 2004, and have a current MRI done. That way, he could compare MRI with MRI and CT scan with CT scan.
We saw the neurosurgeon again this past Friday (7/1 and took all four discs of images to him. He believes that we may be possibly dealing with a tumor and an AVM. He ordered a cranial angiogram — the test that my dad could have had done four years ago — to track blood flow and see if what looks like an AVM really is an AVM.
Here’s the tricky part. The location of this thing, whatever it is, is deep within my dad’s brain — in what they call “eloquent tissue” — located on the right side, towards the back. If left untreated, the tumor/AVM could cause a gradual decline in virtually any area of his health/functioning. If treated surgically, it could cause the same effects in less time. For instance, he could eventually lose his eyesight completely if he does nothing to treat it. But if he has the surgery, the occipital lobe of his brain could be damaged and he could end up blind as a result.
There don’t appear to be any good options for him at this point. I’m spending a lot of time these days thinking about what my life will be like without my dad around, and it’s heartbreaking. I can’t even begin to describe how much I will miss him. When I was going through a really nasty divorce, he called me every night to make sure I was okay. When I was in college he sent me goodie baskets with encouraging notes just before final exams. When Dan and I got married, he gave us his whole-hearted blessing and has treated Dan like a son ever since then. When I went to the hospital to give birth to Trevor, he raced up there so he could be there when his first grandchild was born. When I was growing up he never failed to give me great advice, usually in the form of “an old saying.” My dad, at many times throughout my life, has been my rock. I will be lost without him.
I am now a member of “The Sandwich Generation.” It is exhausting, both physically and emotionally. I find myself telling God, Please, not now. I’m not ready for this! But then I realize that I will never be ready to say goodbye to my parents.
Tuesday, July 22, 2008
'I knew my brain was imploding... but I've never been more excited'
As a brain scientist, Dr JILL BOLTE TAYLOR had dedicated her life to understanding the human mind. So, when she suffered a stroke aged 37, she was in the rare position of being able to observe - and understand - what could be occurring to her brain at the time. Here, Jill gives an incredible insight into what happens when you have a stroke...
On December 10, 1996, I awoke to the familiar tick tick of my CD player as it began winding up to play. Sleepily, I hit the snooze button. It was 7am.
Six minutes later, I sluggishly awoke to a sharp pain piercing my brain directly behind my left eye.
As I bumbled to the bathroom, I felt peculiar, as though I was observing myself in slow motion. My movements were no longer fluid; they were deliberate and jerky.
Then, as I turned on the tap, I realised my hearing wasn't right. I was also having problems with my balance and co-ordination.
Jill Bolte Taylor, as a brain scientist, found the experience of a stroke exciting, despite the potentially fatal consequences
Only at that point did I, a neuroanatomist who had spent nearly 20 years studying and researching the brain, realise something was afoot.
Co-ordination, balance and breathing are processed through the part of the brainstem called the pons and, for the first time, I realised I was having a neurological malfunction - a life-threatening one.
What was going on? I wondered. Have I experienced anything similar before? This feels like a migraine.
A tingling sensation surged through my chest and forcefully radiated into my throat. I became aware I was in danger.
As I stepped out of the shower, my right arm dropped completely paralysed against my side. In that moment I knew.
'Oh my gosh, I'm having a stroke!'
Bizarrely, I was rather elated when I realised what was happening in my brain. I kept thinking: 'How many scientists get to study their own brain function and mental deterioration from the inside out?'
When my arm became paralysed it felt as if something inside it had exploded. When it dropped dead against my body, it clubbed my torso. I felt as if my arm had been guillotined off.
But while most would panic, I understood that my motor cortex - which controls the ability to move - had been affected. A few minutes later, the limb began to throb. I wondered if I would ever be normal.
I caught sight of my bed and thought: 'I just want to rest.' But resounding like thunder from deep within me, a commanding voice retorted: 'If you lie down now, you will never get up!'
I didn't know what type of stroke I was experiencing, but later I was to discover it was the congenital disorder arteriovenous malformation, or AVM, which was spilling blood over the left hemisphere of my brain.
Normally, the heart pumps blood through the arteries with high pressure, while blood is retrieved through the veins, which are low pressure. A capillary bed acts as a buffering system between the two.
But with AVM, an artery is connected to a vein with no buffering capillary bed in between. Over time, the vein can no longer handle the pressure and the connection between the artery and vein breaks, spilling blood into the brain. Although AVM accounts for only 2 per cent of haemorrhagic strokes, it is the most common form that strikes people during their prime.
Calling for help
I knew I had to get to hospital. But I felt disjoined from the linguistic and numerical skills controlled by the left side of the brain. That's why I didn't call the emergency services. The haemorrhage was positioned over the portion of my brain which understood what a number was.
However, in a moment of clarity, I knew one of my work colleagues would get help - if only I could remember the number. Eventually the first half, then the second half of the number appeared in my mind and I jotted it down. I was copying an image of the number in my mind, rather than actually remembering it. The process took 45 minutes.
I dialled the number by matching my squiggles on the paper to the squiggles on the phone pad. To my great fortune, my good friend, Dr Stephen Vincent, was at his desk.
I blurted out: 'This is Jill, I need help.' It sounded more akin to grunts and groans, but Steve recognised my voice and realised I was in trouble.
I couldn't understand what he was saying, but I could glean he would come to my aid.
When Steve appeared in the doorway (less than an hour later), no words were exchanged. He escorted me gently to his car and drove to the hospital.
I was taken to have a CT scan of my brain and was conscious enough to find some satisfaction in learning my self-diagnosis had been correct. I was having a rare form of stroke.
Steve called my mother to tell her what had happened.
That afternoon, the doctors came to visit. I was introduced to a neurosurgeon called Dr Ogilvy. He suggested my brain was opened up to remove the remnants of the AVM and a clot the size of a golf ball. He said if the AVM was not removed, it was likely I'd haemorrhage again.
When I realised they planned to cut open my head, I was aghast. Any self-respecting brain scientist would never allow anyone to do this - we know how delicate the brain is. I shook my head to make this clear. However, my mother persuaded me to have the surgery because it was my only chance.
Five days later I returned home, where I had less than two weeks to prepare for the operation. My mother was my carer. I would sleep for six hours, then wake for 20 minutes before sleeping again.
Mother learned not to ask me 'Yes/No' questions - these didn't challenge my brain enough - so she used multiple choice.
She'd say: 'For lunch, you can have minestrone soup', and I would search my brain to figure out what minestrone soup was. Once I understood that, she would proceed with another choice: 'Or you can have tuna salad.'
On December 27, I returned to hospital. I awoke from surgery to discover the left side of my head had been shaved and a nine-inch scar was covered with a gauze.
The moment my mother arrived, she blurted: 'Say something.' Since the clot they'd removed abutted the part of my brain responsible for language, her greatest fear was that I'd lose my ability to speak.
I spoke and we both cried. The surgery had been a success. I think of the brain as a playground filled with children. If you remove the sandpit, these children will start doing whatever else is available to be done.
This is true for neurons in the brain. If you wipe out a neuron's genetically programmed function, those cells will die from lack of stimulation or they'll find something new to do.
For example, if you put a patch over one eye, those cells in the visual cortex will reach out to other cells to see if they can help towards a new function - say hearing or speaking.
It was vital that I re-stimulated broken connections in my brain before they died or forgot their purpose.
I focused my rehabilitation on an art project - I created an anatomically correct stained-glass brain. It took eight months, but it was beautiful.
My recovery was steady after that. After three years, I could play solitaire again.
After four years of walking three miles a day, several times a week, I could walk smoothly.
During the fourth year, I could multi-task again.
By the seventh year, my need for sleep had cut back from 11 hours to nine-and-a-half.
I now live the perfect life. I still work for the Harvard Brain Bank, I love skiing, walking and play the guitar. But, once in a while, I can't help but ponder the irony of my experience - a brain scientist having a stroke.
Extracted from My Stroke Of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor (Hodder, £12.99); Jill Bolte Taylor 2008.To order a copy (P&P free) call 0845 606 4206.
Monday, July 21, 2008
Well I have no news on AVMs.
I also have 0% HOT TUB NEWS!
That kida blows.
It is true I still maintain a Hot tub / spa / pool blog. I post news about hot tub there.
and I give links to Amazon prodics. I try to post other peoples thoughts there... cause I can spell worth a damn.
Well have a good day... I will try to add some youtube here... my comp is still fu$ked up... but I will try.
A Flock of Seagulls - Nightmares
Hoodoo Gurus - My Girl
Iron Maiden - Flight Of Icarus
That last one Rocks!!!!
Ok I'll play one more....
I've got too dig the old VHS out...
Lets do the time warp again!!!
I had to do just one more....
I like the first and the third but thats just me.
Sunday, July 20, 2008
AND AND AND
It is time...
Whether it is hydrogen or something... April $2.69 July $4.78
HHO sounds good to me.
The thing you have to look out for is the Con Man... if you can stay away from him... you may do well.
Well I have magnificent news!!!
As you know, we have been waiting for
the results of the latest CTA scans on
Tuesday to discover whether Becca's
hemorrhagic stroke was the result of
a aneurysm or a AVM and what
sort of treatment she would need to
correct the damage or malformation.
Well Dr Tan called Becca today and
informed her that the scans came back
clear and normal! He said that no
surgery or radiation or any further
treatment would be needed!!! Becca
was in shock so after she spoke to
him we had Joel call him back to clarify
and he said that whatever it
was is gone and that whether it was an
aneurysm or a AVM it "must have
resolved itself". As you can imagine,
we are ecstatic and full of deep
gratefulness to God for His kindness
and merciful love.
He is good and though we may not
always understand His ways and the
things He allows us to go through,
we can be confident that He holds
us all at the very center of His heart
and walks with us through each and
every storm. We have experienced His
love and provision through so many of
you and I want to thank you all for
being His hands and feet, His arms of
love and strength, His words of comfort
and hope for all of us.
-Pricilla [Becca's mom] and family