Thursday, December 14, 2006
Senator's speech signals bleeding brain
Yesterday, Sen. Tim Johnson, a South Dakota Democrat, was in a meeting when he suddenly started having difficulty speaking. At first, he couldn't find the right word, then he started stammering and finally stopped speaking altogether. After he walked back to his office, it seemed that his right arm or leg had become numb. His staffers didn't know what was wrong at first, but then sent him to the hospital. It was the right thing to do. Johnson was having symptoms that sounded like a stroke.

As we now know, the senator actually had a congenital arterial venous malformation in his brain, known as an AVM. This is a cluster of arteries and veins in the brain that grow together. Sometimes, for unclear reasons, this tangle of blood vessels will bleed - and that blood puts pressure on the brain. The pressure causes the stroke-like symptoms. He underwent an operation to remove the blood and stabilize the tangle. The doctors say it was successful, and the senator is now recovering. Judging from the location of his bleeding, his recovery will most likely take quite a while. It was on the left side of his brain, in an area responsible for the ability to speak and understand. Most surprising to many is that this AVM was probably with the senator his entire life and never before caused any problems. The senator probably never even knew he had a problem until he could no longer speak.

Most people reading this and watching the news coverage are immediately wondering whether this could happen to them. The answer is: It's very unlikely. You have about a 1/1000 chance of having such a problem. Still, many people may want to get screened to tell them for sure. They never want to be in the position in which the senator now finds himself. The problem is that the screening can get very expensive. The best test to look for this sort of problem can cost $2,000. If everyone in the nation were screened, the cost could be in the hundreds of billions of dollars. Is it worth it? Let's hear your thoughts.
I've always favored pre-screening for people at risk for different diseases. If a person has heart disease issues within their families they should be screened starting at 40 for artery blockage. It should be that way for any person at risk. I understand the cost issue, but we all want to live long lives.
Dr. Gupta,

My sister had this exact condition which required surgery in 1999 (you were actually one of her surgerons while at the University of Michigan Medical Center.)

At the time, our family was told that it was not necessary for us to be screened for this condition, that it was not hereditary. Would you suggest that we have screening done for this condition? Is it still thought to be non-hereditary? Is screening like this covered by insurance?

I think it may be worth having it done given the circumstances in our family.
I knew the moment I heard the Senators' speech that it was something I had experienced in my own family. My 36 year old daughter just had surgery for the same thing in Feb. 2006. Hers was located on or near her brainstem. I just want to say to the family of Sen. Johnson that take one day at a time, as it is a long recovery process and have faith, as I believe that is how we survived this awful thing. My daughter is still recovering from some physical problems, and you never know what the next day will bring. I expecially want to say a big thank you to her Drs. as they are among the best regarding this type of brain surgery.
I am one of the minority of people who also had a left sided AVM with successful neurosurgery approximately 12 years ago. My presenting symptom was one Grand Mal seizure, clonic/tonic. My only residual effects from the surgery were aphasia for one week, only able to say "Just Fine!" and recurring seizures for approximately 5 months. Since that time , I have had no residual effects and have been off of anti-seizure meds for 11.5 years.

I wish Mr. Johnson a speedy recovery and best wishes as he resumes his career in the Senate.
i was diagnosed with an AVM in my pons....i was told it was rather large.....any thoughts?
If you have any unexplained minor neuro symptoms, I would think you might want to consider AVM after seeing a neurologist
Not worth spending hundreds of billions on just one thing - there are many other ailments that can strike a person in a lifetime and could be more probable and equally or more debilitating. Once the tests become cheaper it may make sense to sanction them for everyone.
How do you ever put a price tag on a human life? Sure, "all" medical tests are expensive, but when they can save a life? You bet the cost is worth it. Can most Americans afford it? That is the tuff question, not whether or not to have the test done.
I absolutely think it is worth it. My brother was diagnosed with such disorder after a car accident led to an MRI of the spine. If you know about you will try to keep yourself under less stree, and your blood pressure under comtrol. Both crutial to even blood flow, and stay away from blood thinners to avoid bleeding. Some are operable, and some are not, but it is always better to know. Life should not be a crap shoot.
$2,000.00 -- only; of course, it would be well worth the money for everyone who wished to be screened to be screened. However, it would also be nice if all citizens had access to affordable health care - dream on, right!
My daughter suffered from an AVM when she was just 7 years old. Her symptoms consisted of severe headaches, vomiting and the inability to touch her chin to her chest, which her pediatrian diagnosed as the flu. When her symptoms persisted and became worse, I took her to the emergency room of our local hospital. We were sent from there to Geisinger Medical Center in Danville, PA where her AVM was diagnosed through an MRI of her brain. She was then taken by helicopter to Thomas Jefferson University Hospital in Philadelphia. We were told by neurologist, Dr. Robert Rossenwasser, that her AVM was deep in her brain "behind her eyes". The decision was made to perform the minimally invasive gamma-knife laser radiation surgery because of the location of the AVM. We spent nearly 5 weeks at our daughter's beside at TJUH before and after her surgery. I am happy to say that through the grace of God and the wonderful doctors and staff at TJUH, our daughter is now 12 years old and a high honors student in middle school. Although at the time, the outcome of her surgery and her future neurological status were unknown, our daughter is living proof that miracles do happen. People do recover from AVM's and go on to live normal, productive lives.
Our thoughts and prayers go out to the Senator and his family. God Bless you all.
Maybe the price is too high for everyone to be able to afford to get screened. Why not lower it and save some lives? Isn't that what medicine is all about - saving lives?
Couldn't he use a keyboard or voice program like Dr Hawking uses? If so, he could participate in the Senate while undergoing therapy.
I am curious how they determine whether something is stroke related vrs AVM and whether a patient can be negatively affected by the time it takes to rule out a stroke (it was reported he didn't go in for surgery until later last night).
Surely there are risks associated with any test for AVM, as well as grave risk associated with any corrective surgery should AVM be detected. Those risks must be factored in with the cost of the test to determine whether it is "worth it" for anyone who might decide to be tested. Apply that risk to each of the hundreds of millions of people in the US, and surely it would be downright irresponsible to test everyone (even if the money to do so were magically to become available).

With smoking and obesity -- to name just two far more prevalent causes of deadly maladies that people actually pay to sustain -- running rampant, AVM is WAY down on the list of things people should worry about or spend money on.
I think that people who have a history of any blood circulation (brain) problems in their family should visit a neurologist. People should be aware of the symptoms. Unfortunately many times there are no symptoms until the attack.
If we had free health care the cost would be inconceivably lower. As free health care lowers all costs of medical care. The test would also detect other harmful diseases too. And this would in turn save taxpayers billions and increase health and life expectancy in this country.
I too had an AVM that bled, and Dr. Rosenwasser at Thomas Jefferson in Philadelphia (odd coincidence with another poster!) performed emergency surgery and basically saved my life that first day. My case was taken over by his outstanding colleague, Dr. Erol Veznedaroglu (shouldn't neurosurgeons be named "Smith?"), and after several more procedures (including a Gamma knife radiosurgery), I am well on the way to full recovery a year and a half later. Although I wasn't allowed to drive for 6 weeks or work for 5 months, I'm now employed as a writer in my industry, taking part fully in my life, and have only the smallest residual symptoms. Hang in there, Senator - it's a scary road, but it does end!
To determine whether or not it's worth it, we need to know if anything can be done for you if you have it. If there's preventative measures for the bleeding, then spend the money to research a less expensive test and give it soon after birth.
It seems that this condidtion is not well known at all. Last year I was hospitalized with spinal menengitis and had an MRI. Two doctors came into my room and told me it appeared that I had an inoperable tumor in my brainstem and held my hand and basically prepared me to accept my
fate. Luckily, I live in Houston Tx where we have MD Anderson and after about 5 months of testing, they concluded it was an AVM. I was 50 years old at the time and never had any symptoms of this thing in my head. I do not think there should be mass screening for this. Next week there will be another disease de jour about which we can all obsess.
Not worth now to do such testing on any one including infants. Such lists would be endless.

If AVM is congenital, can be diagnosed at the time of birth and can be corrected then such a test can be included as part of routine tests on New Borns. Even then it should be based on expert opinions and Statistics.
What's the "best test" and what are its risks? What are the costs and risks of follow-up?
According to the NIH fact sheed on AVMs, , only 12% of people with the condition become symptomatic and only 1% die. Screening alone involves about $200 million in expense for each avoided death even if no one dies from complications following an invasive corrective procedure. That money is much better spend on other public health programs.
Interestingly for Sen. Johnson's case, the NIH fact sheet indicates that AVMs that remain asymptomatic by the time a person reaches his late 40s rarely produce symptoms later. What bad luck for the Senator that he's one of the rare exceptions.
One more thing: regarding screening, I was told that the only way an AVM could be definitively diagnosed was via cerebral angiogram. A CT scan at my local ER showed bleeding in my brain, and they performed a brain MRI at Jefferson, but it was only the angiogram that clinched it. Perhaps an MRI can tell a patient if they have an abnormality or not, and an angiogram is needed to make a more detailed diagnosis. But then again, I'm not a doctor - Dr. Gupta?
How does one assess if certain folks are at more risk than others. To those, it might be well worth the $2k.
What would happen to a non-senator person who did not have a quick access to that hospital?
Why do you expect a free ride? Socialism has a price too.
Many prayers for the Honorable Senator and His Family are being sent from my home in North Carolina. I have already seen the political side starting to come out...maybe it will come out to the point that we need affordable health care in this country. I have insurance, good insurance, but there is so much that is not covered. Why? We are not all wealthy. In fact the wealthy in this country are part of the smallest percentage of the population....oh I could go on.
I just pray for the Senator and hope for the best!
Is this a familial problem or are there other types of markers which could be used to know if you should have the screening or not? This would help with the decision of whether or not to screen.
Given that millions of Americans live without access to basic medical care, I think that spending upward of half a trillion dollars to screen for one disease is ridiculous. There are more common diseases that can be detected at lower cost and much greater benefit to the public health burden. Reduce smoking, promote weight loss and exercise; widen access to mammograms and PSAs; provide more screening for diabetes and high blood pressure--all of these issues plague the population that lacks access to medical care. Those simple preventative measures would all save more lives than spending billions to screen people for AVMs.
I had an AVM removed in April of this year. I'm 27 years old, and it was in the right occipital lobe, which controls my left field of vision. I had never had a head CT, and had a history of what I thought were migraines. All is well now, but as rare as they are, it was interesting to hear that someone at his age just found out about it (AVMs usually present themselves between the ages of 20-40 via bleed, stroke or seizure).

My thoughts are with him.
My father-in-law died from AVM in January and our family physician recommended that my wife have this test - which she did just this past Monday. Our insurance covered the cost and the results were negative. While the odds are that an individual will not have this problem, it is my understanding that some families are more genetically prone and screening in that case is clearly a reasonable course of action.
If people want to pay for it themselves, have at it!
Maybe AVM screening would be a good idea for pilots, ship captains, surgeons� people who routinely hold the lives of others in their hands in situations where even a momentary falter could spark disaster.
Yes, if Health is indeed Wealth, we better live up to it. But a word of caution - the more you THINK you have a problem, you actually make it happen! Its good to go for periodic checks every once in a while - and consciously lead a Healthy lifestyle. But its also important that we stop THINKING "Do I have some problem? ... or what if I have one?!" We are born to be Happy(Carefree) and not be Concerned.
One in one-thousand sounds frequent to me. Still, we will all die of something and instead of having the scan, I will make sure that my living will is in order.
No, I'm not worrying about whether this can happen to me. I'm worrying about what will happen to my country if indeed Sen. Johnson is unable to serve out his term, and Gov. Rounds appoints a Republican successor, and the profligate Republicans wind up in control of the Senate once again.
Seems to me the first thing we should be concerned with is the recovery of Sen. Johnson, the second should be the control of the Senate and what that implies, and the last thing in the world we should worry about is whether this might happen to us. Is it really all about me? I don't think so.
As a medical professional I must say it is not worthwhile to screen large amounts of people for a congenital malformation that even doesn�t have a "date" to manifest, if they do manifest during the entire one�s life expectancy.
The costs go well beyond AVM screening. There are hundreds, if not thousands of rare congenital conditions that could potentially be lethal. Are we going to screen for all of them? No, of course not. It's not possible. If a hypochondriac millionaire wants to spend his fortune on diagnostic tests, that's his own business. But the US healthcare system can't support a nation of 300,000,000 hypochondriacs. There isn't enough money in Fort Knox to pay for it all...
I had suffored for years with what were thought to be migraine headaches,from the time i was 12 untill the avm leaked at the age of 34.I being right handed and the avm mass located on my right side of my brain sped up my recovery after major surgery.I can say that at the time of the attack that the leaking of blood into the brain caused the most undescribabe pain throughtout my head and neck.My real comment is to be insistent about medical testing if you suffer from what may be or believed to be bad headaches.
I think that if you have any of the indicators it might be worth having testing, however if no symptoms are present, I don't think the cost is worth it. I don't think that knowing you might be a walking time bomb really helps anything.
$2000 dollars to scan a symptom-free adult for an arterial venous malformation (AVM) that occurs in less than one in a thousand people. $1000 to do genetic testing on a symptom-free woman to see if they have a genetic disorder that makes them more susceptible to breast cancer, yet occurs in less than one in five-hundred people. Undiagnosed, both disorders can be fatal, but the cost of screening everyone for these and thousands of other medical conditions is prohibitive.

Crude as it sounds, there is only so much money to go around, and we can bankrupt ourselves and overwhelm our testing facilities if we pay for every diagnostic procedure and test that might possibly be of use.

It's not just a question of cost, either. Dr. Gupta can tell us that many people with AVMs live their entire lives with an AVM that doesn't hemorrhage (bleed), and there is no clear diagnostic line between those that will hemorrhage someday and those that will not. Do we perform risky brain surgery on every AVM? And, if an AVM is found but surgery is not performed, will the guy running around with a potential time bomb in his head worry himself to death?

The same concern is present in many diagnostic tests. Some breast cancers, for example, occur more frequently in women with a specific genetic defect than those without it, yet simply having the defect does not mean she'll get cancer. Should a woman who is positive for this genetic defect opt to have a radical mastectomy or not?

Testing is not fool-proof, either. X-rays and just other diagnostic tests can be mis-interpreted, meaning that some people will be diagnosed with a medicals condition they don't have, and some people who have a disorder will be missed.

Testing itself is not without risks. Every x-ray presents some small risk of causing cancer; get enough x-rays and your risk of getting cancer goes up, and this may be doubly true of x-rays of sensitive tissues like the brain. If regular CT scans become standard practice we'll have higher cancer rates.

And let's consider the cost of testing again. Since our financial resources are limited, wouldn't it be better to use the money we might spend on tens or hundreds of thousands of $2000 CT scans to find a rare disease on other health care priorities? We'd get a lot more "bang for our buck" and save more lives spending that money on diabetes prevention, vaccinating children, and helping smokers quit.

The wisdom of testing everyone for the breast cancer genes BRCA1 and BRCA2 serves as a case in point. Women who have these genes are less likely to get breast cancer and those who are affected tend to get the disease later in life if they exercised regularly and maintained a healthy body weight when they were young. The risks of many, many diseases are higher for those who are overweight and don't exercise.

Perhaps someday there will be safer, more accurate, affordable testing for a broad pallet of diseases. Meantime the best prescription for staying healthy is the same advice doctors have been giving us for years and years and years: eat right, exercise, maintain a healthy weight, quit smoking, and wear your seatbelts.
I had an AVM in 1980. It was not operable because of the location. It bled again in 1992 when I had gamma knife surgery. It didn't really help but I am still here. I have tingling on the right side of my face and upper body. I just want people to know that this doesn't mean he is going to die. I am 62 and still here.
Testing would be definitely be worth the price if in fact the affliction were to be the hereditary one; fortunately my daughters' was not. But being with her nonstop 24/7 and seeing what she went through struggling to come back to being herself, I would not want anyone else in my family to experience what she did. Hers was a genital defect, and where it was located and where they had to enter her skull, it has left her unable to use her right eye. But that is a small price to have to pay to have her in our lives. Her prognosis by the time they figured out what it was was very grim. Her chance of surviving the surgery was 10%. She first lay in another hospital for 3 days, while they were trying to figure out what it was, and by the time they got her transferred to TGH, her system was already shutting down. Her wonderful surgeons knew right away she was in trouble. Surgery was started the next morning
Were her children to be at risk, we definitely would get tested. Until you have been there, you don't know what life changing decisions you have to make.
Where do you stop? AVM isn't the only killer out there and infact there are number of other conditions that affect higher number of Americans.

Most people with AVMs are asymptomic and will remain so. Screening these folks will do more harm than good. If abnormalities are found it'll most likely lead to further testing and follow-ups which means cost, time and emotional distress.

I know, I've been there. Though I don't have an AVM, a routine CT scan revealed a problem which is compeletly asymptomatic, yet is causing enough of a concern. This year had been full of endless tests and specialists visits. Unfortunatly the pattern will continue because of the small chance of the 'what ifs'. I have to wonder if this will ever cause a problem and knowing it most likely won't, I wish it'd never been found. The anxiety after each follow up testing is tiring.
I am an AVM survivor (1999 - parietal/occipital). It happened suddenly, with no preliminary symptoms. I got stabilized at NY Hospital and, a week later, had brain surgery. I was hemiplegic (right side). Although in a much better shape today, I still struggle with physical and cognitive impairments. However, improvements are STILL occuring and me keep active in my efforts to recover. I would like to stress this point as too many people are under the impression that recovery after the first few years is minimal.
The brain is still an area with many deep mysteries but significant research is actually being done in this field. Consequently, people affected by these conditions should keep hope.
In my opinion, one major difficulty is to have access to valid information and treatment. The other major issue (very much connected) is of course financial. Many patients have little or no insurance. This is truly a very sad issue in this country.
With all my thoughts for Mr. Johnson and his family.
"His staffers didn't know what was wrong at first, but then sent him to the hospital. It was the right thing to do. Johnson was having symptoms that sounded like a stroke"

What a naive statement! I have heard and known personally of people who had stoke symptoms and were sent to hospitals and spent hours and hours in the emergency room, regardless of whether they had health insurance.

Even if you are able to pay for medical what good does it do you, if you can't get medical care in an emergency because the ER is so overbooked? But, of course, a senator wouldn't have this problem because he's one of those "important" goverment people. What are the rest of us supposed to do? Go to the hospital and die there?
I have been taking Premarin - lowest does for 29 years since having a complete hysterectomy. I have failed twice to quit taking the premarin...the hot flashes, night sweats, mood swings just have seemed like way more than I can deal with. I want to try again to quit. Should I reduce the level I'm taking to every other day or just quit cold turkey? I have tried to ease off before and that didn't work. Is there a risk with stopping cold turkey?
Dr. Gupta writes that the odds against having this congenital problem are 1/1000, and that the cost of testing is $2,000. If the tests could save all of the lives that would otherwise be lost, the cost per life saved would be only $2,000,000. Of course, it is unlikely that every problem would be detected, or that every dectected problem would be curable. But even assuming that the testing is only 50 percent effective, the cost per life saved would be $4 million

In conducting safety analyses, economists routinely ascribe significantly higher economic values to saving a human life. $5 million is about the minimum accepted by most economists, and $10 million would not be beyond reason.

Therefore, although the cost seems high in the abstract, it is absolutely reasonable under the standards of cost/benefit ratios widely accepted in other areas.
Is a war against a soveriegn nation which had not attacked or threatened the USA, in which thousands of american youth are killed and scores more wounded ,let alone 10's of thousands of innocent Iraquis killed, worth spending hundreds of billions of dollars on?? I'll opt for the AVM screening!
I started HRT when I was 45 yrs. old. My family history of heart disease and early deaths(my dad was 48)and his bros. were even younger led my Dr. to feel this was good for me and I was having a terrible time with hot flashes, depression and loss of a good nite sleep and working as a teacher full time also. It helped me so much and then came this study and 1 yr ago I decided to go off the HRT. I am now 64 so you can see I have been on it a long time. I am now miserable with sweats, not sleeping well and mood swings. Now, what I find interesting is the fact that when I had my yearly physical my Dr. could not believe that my cholesterol levels doubled as well as my bad cholesterol. She wondered what I was doing differently....answer....nothing, except, I stopped my HRT. What has anyone studied on that theory??? I am so tempted to return to HRT. I get my mammograms regularly and am weightin the options of returning to HRT. I am so upset and confused with all the studies and wonder why we as women cannot get better facts? Maybe it is a gender factor??
My brother died of the same condition at age 19 in his first two weeks at college. His affected the brain stem which we were told was the worst possible area to make a full recovery. Had he been screened, it is possible doctors could have prevented it. However, it is even more rare in young people. It is probably not practical to screen for this due to its rarety. However, it does not seem so rare when it happens to one of your family members.
The big fallacy that most people in this blog thinks is that screening for a AVM can save your life. That is false. If you screen for AVMs and a person is found to have one, if that person dies in s surgery that he or she may not have ever needed, is that saving a life???

By the way, having worked in an ER I can tell you that if you come in with stoke symptoms, no matter who you are, you will be seen before most everyone else and not wait regardless of insurance or social status. That's the law. Now if you come to the ER with something stupid (ear wax, belive me I have seen that!), you may be seen sooner if you are an important person.
In the case of our daughter who has been in a coma for three years due to an AVM yes the test would be worth it!! Our daughter was misdiagnosed for her symptoms when they first occured and when the blood vessel broke they had to operate. She survived the operation but has remained in a coma ever since. She was 38 when this happened. Her three children where tested an so for they seem to be okay, but I am wondering if they are walking time bombs.It has been a terrible tragidy in our life!!
Of course it is. It is a human life. I have a daughter with an avm on her cheek, and I pray for a cure every day of my life. This is a very rare condition, and my feeling is that it gets pushed aside as far a research. With all the progress being made with laser, I can only hope that this will be a bright future to all with this condition. A screening of the brain would save lives, isn't that what we should be spending our money on?
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