View Full Version : I need input on seziures
08-17-2005, 08:32 AM
I am not looking for medical advice, I will be in Anchorage today or Friday with my daughter at the hospital, and am mostly interested in being armed with what to ask the doctors. Google is being of no help to me, this may be my fault, as I am not thinking terribly clearly.
My son-in-law has begun having seziures (grand mal) last Friday. There have been two previous seziures (that we know of) in his past. He is currently in ICU, on a respirator, having had his most recent seziures while my daughter was grocery shopping, and he aspirated quite alot of vomit. Also, he was still seizing when the EMT's arrived, and it was not brought under control until after he was in the E.R.
The MRI has shown that he has a congenital blood vessel in his brain. He was put on Dilantin and released from the hospital. He seemed okay, so my kid ran out to grab some groceries and came home to this.
I digress. If anyone is willing and able to give me a hand, I would appreciate it. Again, I am not asking for advice, just if someone could help point me in the right direction, as all I am able to research at the moment seems to be aneurysms and epilepsy.
Many humble thanks.
Duck Duck Goose
08-17-2005, 09:44 AM
The MRI has shown that he has a congenital blood vessel in his brain.
Assuming that this is what you're talking about...
A brain tumor or structural defect in the brain may cause a seizure. Structural defects can include:
< snip >
* Arteriovenous malformations. An arteriovenous malformation is a congenital disorder that causes an abnormal web of blood vessels and veins in the brain, brain stem, or spinal cord. The vessel walls of an arteriovenous malformation may become weak and leak or rupture.
All about arteriovenous malformations. Vast quantity of information at this link, I suggest you print out and read at your leisure.
Mortality/Morbidity: Although 300,000 persons in the United States may harbor AVMs, only 12% of AVMs are estimated to become symptomatic. Death occurs in 10-15% of patients who have hemorrhage, and morbidity occurs in approximately 50%.
< snip >
Treatment planning for AVMs depends on risk of subsequent hemorrhage, which is determined by the demographic, historical, and angiographic features of the individual patient. Prior hemorrhage, smaller AVM size, deep venous drainage, and relatively high arterial feeding pressures make subsequent hemorrhage more likely. Treatment is recommended for the younger patient with one or more of these high-risk features, whereas an older individual or a patient with no high-risk features may be best treated by managing the medical aspects of the illness alone. In such patients, anticonvulsants for seizure control and appropriate analgesia for headaches may be the only treatment recommendations necessary.
< snip >
* With an overall risk of intracerebral hemorrhage of 2-4% per year, angiographic assessment is recommended to further define prognosis for patients with AVM.
* Those with superficial, moderate-sized AVMs have a good long-term prognosis and may not have any additional benefit with interventional treatment.
* Lifetime risk of hemorrhage may be substantial for young patients with AVM.
* Prognosis after AVM hemorrhage is generally better than that after intracerebral hemorrhage from other causes. Better prognosis may be due to the relatively younger age of patients and a greater potential for reorganization of brain function. More accurate prognosis awaits the results of currently active, long-term, population-based outcome studies.
So it's not an automatic death sentence (that's what you were wondering, right?) But now you're basically in a "wait and see" mode. You need more tests, you need to wait and see if he hemorrhages, you need to wait and see what happens next. My guess would be (disclaimer: IANA doctor) that you're almost certainly looking at some kind of brain surgery eventually, if his seizures can't be managed with anti-convulsants, or if he hemorrhages.
You're saying that he had seizures before, and was sent home on Dilantin? How long ago was this? Why wasn't an MRI done then, which would have found the arteriovenous malformation? Or are you saying that they found the malformation with an MRI after he had his previous seizures, and they implemented the "non-high-risk" treatment option outlined above by sending him home on Dilantin?
08-17-2005, 10:32 AM
Thank you for the response, and for the links, I'm going to print them out and take them with me.
This is what I know, my daughter and sil live 200 air miles away, so this is information gathered over the phone long distance.
Last Friday, 1:00 am-ish, they were in bed, sil was sleeping, daughter was playing a game on her cell phone. (she works late and needs to unwind) She heard him breathing funny, thought he was snoring, but when he didn't respond to her she went to the other side of the bed and realized he was having a seizure. She dialed 911 and the paramedics took him to the hospital. The E.R, kept him for about an hour, then sent them home. Around 3:00 am-ish he began making "funny" noises, and my daughter realized that he was having another seziure. 911, back to the hospital where they gave him Dilantin (IV? Intramuscular? Subcutaneously?) and he had yet another grand mal in the E.R. and fell off the exam table. (I believe it was then that they gave him an I.V. with Dilantin.) They proceeded to keep him in the E.R. all day Saturday. The EEG and CAT scans came back normal, haven't heard decisivley if they did the spinal tap or not, and if they did what the results were. We, both families, were screaming "MRI" so they gave him one of those. Ah ha, a congenital constriction of a blood vessel. He was finally admitted late Saturday evening. They kept him until Sunday, then released him with a script of Dilantin. While he was in the hospital he had continous dry heaves, and so was not allowed to have anything to drink. He also chewed the hell out of his tongue, so it is quite swollen and painful.
His first seizure was many years ago, and it was the result of a cocaine overdose. His family doesn't know about this, and my daughter made me swear to keep my mouth shut. *sigh* The second was, oh, about a year and a half ago. He was driving across the bridge and all he remembers is getting close to the intersection when he lost consciousness, ran the stop sign, and hit a passing car. He has no recollection of the wreck, or several minutes following it. The doctors in Anchorage insisted it was a heart issue, performed an experimental procedure on him (playing with his heart rate while he was mildly sedated. They raised it up and down, and at one point slowed it down so far it quit beating and they had to paddle him to get it started. Which he totally felt and freaked out. The doctors and his mother all insisted on having a heart moniter implanted into his chest (big uninsured medical bill) and apparently, if the doctors had ruled out all the possibilities for his "incident" perhaps they could have skipped playing Frankenstein with his heart and dealt with the brain issue then.
I have spoken to him on the phone over the past two days, and he sounds really weird, my thought initially was that he sounded as if he had had a stroke, but having a brother with epilepsey, and having worked in a group home with a couple of epileptic residents, I understand that a grand mal put a tremendous amount of strain on a body, and Dilantin can make one seriously loopy. Not wanting to borrow trouble when there is already too much I pushed the thought out of my mind.
Tonight I called my daughter, and she was at the grocery store. As I hate talking to her while she drives I told her to just give me a call back when she got home. Time passed, and I heard first from his mom, then my daughter, what had transpired during the short time she had been gone.
Yes, I am worried about his prognosis. I have been seeing quotes of 40% death rate....he is 24, she is 23, and they have been married for almost five months. We are in the midst of organizing a reception for them together for September, which is why I called my kid in the first place.. I am so scared and worried, and I want to be armed with some in depth questions for the doctors.
The icing on this ugly cake is that he completed his CDL/Heavy Machinery Operator/HazMat certification and liscensing and finally got a job with the State last month. His insurance kicked in two weeks ago, and the State is so pleased with him after a very short period of employment that they have told him not to worry, he still has a job even if he can't drive.
I apologize for my incoherency. I haven't slept yet, and I have to get packed and ready to go, buy a plane ticket, etc. Again, thanks for steering me to some information, I have been floundering on Google. I am a trainwreck in and of myself right now. And now I am rambling. Off to look at links!
08-17-2005, 01:31 PM
Duck Duck Goose
08-17-2005, 03:22 PM
Hon, I feel for you, as I have a married daughter 200 miles away, too. I'd be nuts, too. Don't apologize.
I have been seeing quotes of 40% death rate
Ya know, I've been Googling around, and I can't find anything approaching a quote for a routine 40% death rate from AVMs.
The only references I can find to a "Arteriovenous Malformations mortality rate 40%" is this:
Because arteriovenous malformations (AVMs) in the basal ganglia and thalamus are difficult to treat, the authors conducted a retrospective study to determine the best management strategy for these lesions. METHODS: The authors reviewed the management and outcome in 101 patients with AVMs treated between 1971 and 1995. In 15 conservatively treated patients, hemorrhage occurred in 71.4% (annual rate 11.4%), and the morbidity and mortality rates were 7.1% and 42.9%, respectively, during a mean follow-up period of 6.6 years.
Now, notice, this is dealing with AVMs that are "difficult to treat" to begin with. And it's a very tiny group.
And then there's this:
Emergency management of deeply comatose children with acute rupture of cerebral arteriovenous malformations
Acute rupture of an AVM can result in rapidly progressing coma. Emergency management with early resuscitation, minimal radiological exploration before rapid surgical decompression results in a mortality rate of 40%, but a good functional outcome can be expected in the survivors.
But again, look at what they're dealing with: acute ruptures in kids admitted to the ER, already comatose. It's saying that if they get to the kid's rupture quick, with fast surgery, then *only* 40% of them die--but they manage to save 60% of them.
But, look, this is not your SIL, is it? He's not a child, he's not already bleeding, he's not comatose. (Is he? If I'm understanding your post correctly, he's on a respirator simply because he inhaled vomit.)
So, no "40% death rate" is turning up.
What I am finding is this:
Most people with neurological AVMs experience few, if any, significant symptoms, and the malformations tend to be discovered only incidentally, usually either at autopsy or during treatment for an unrelated disorder. But for about 12 percent of the affected population (about 36,000 of the estimated 300,000 Americans with AVMs), these abnormalities cause symptoms that vary greatly in severity. For a small fraction of the individuals within this group, such symptoms are severe enough to become debilitating or even life-threatening. Each year about 1percent of those with AVMs will die as a direct result of the AVM.[bolding mine]
One. Per. Cent.
Where did you get that "40%" figure?
You need to put down the suitcase :D and sit down and take a deep breath and look at what these statistics are actually saying.
This following statistic from the eMedicine link does NOT say that 50% of all those who have an AVM will die.
Mortality/Morbidity: Although 300,000 persons in the United States may harbor AVMs, only 12% of AVMs are estimated to become symptomatic. Death occurs in 10-15% of patients who have hemorrhage, and morbidity occurs in approximately 50%
"Mortality" means "death". The mortality rate is "how many people die from this."
"Morbidity" means "the state of illness, or of being diseased or ill". The morbidity rate measures how many people in a given group are "ill". It's not saying that 50% of people with AVMs will die.
Okay. Back to death rates.
It says that 12% of those people who have AVMs, whether they know about it or not, will have their AVM "become symptomatic", which does not automatically mean "kill them". It means "cause seizures or hemorrhaging so as to draw attention to itself". So, this is your SIL. He now has a "symptomatic" AVM.
So, of those 12% whose AVM become symptomatic, 2 to 4% will hemorrhage. (That number is from here. (http://www.ninds.nih.gov/disorders/avms/detail_avms.htm)) (BTW, this NIH link is another humongous info-packed printer-cartridge-devouring one.) Doing the math, that means that 96 to 98% of those whose AVMs become symptomatic, that is, "make themselves known by various ways", DO NOT hemorrhage (I suppose they have seizures instead), which means that the odds are way in your SIL's favor against a hemorrhage.
But to go on: 10 to 15% of those patients who do hemorrhage, die.
Okay, so do the math. Of the group that your SIL is in, let's take the high numbers, worst case scenario: 4% of them will hemorrhage, and 15% of that 4% will die. 15% of 4% is .6%. That's six-tenths of a percent, not even 1%. Maybe the NIH rounded it up... :D
A "40%" death rate? I don't think so.
Yes, he's got something seriously wrong with him--but it's NOT an automatic death sentence.
Re: the coke overdose. I agree that there's not much point to mentioning it, as what's done is done; his condition is congenital, which means he was born with it. But I did discover that it's really, really important that he never, ever do coke again:
Stroke secondary to cocaine is most common in men under 40 years old. Risks include a history of recent cocaine use. In a few people who experience stroke after using cocaine, an underlying arteriovenous malformation is found, which may have predisposed them to developing a stroke. In these cases the stroke is due to bleeding in the brain as opposed to decreased blood flow.
Common risk factors for stroke include:
Manageable or Preventable Risk Factors
* Diet & Nutrition
* Physical Inactivity
* Substance/Alcohol Abuse
* Certain medical conditions, including:
o Abnormal blood vessel connections (arteriovenous malformations and arteriovenous fistulas)
o Cerebral aneurysms (unruptured)... If they do get his seizures stabilized and send him home without surgery on a "just learn to live with it" basis--as is quite possible--he needs to understand that he will ever afterwards be at increased risk for stroke due to the AVM, and thus it's really important not to do coke and thereby load yet another stroke risk factor into his circulatory system.
if the doctors had ruled out all the possibilities for his "incident" perhaps they could have skipped playing Frankenstein with his heart and dealt with the brain issue then.Well, hindsight is 20/20. The main cause of "fainting", aka "blacking out", after the medical personnel rule out things like pregnancy, dehydration, low blood sugar, stroke, heat exhaustion, or side effects from medications, is heart and circulatory problems, because it's basically a blood flow problem.
If "seizure activity" wasn't described to them in the ER--if it was only "I fainted", not "I had a seizure"--and if he told them that he had a history of cocaine use (cocaine can damage the heart by constricting its blood vessels), or if they did a blood or urine test and found traces of cocaine, the combination of "I fainted" and "I did cocaine a while back" would make them go, "Ah ha!" and start looking at his heart, and not bother about possible neurological causes of blacking out.
They wouldn't have given him a heart implant if they hadn't had some good medical reason for it. It's not like they happened to have an extra one lying around and thought they'd kill an afternoon by giving it to someone whose name they picked out of a hat. :D More likely they did find something that led them to believe he'd benefit by having it.
Keep us posted.
Duck Duck Goose
08-17-2005, 03:24 PM
Grieving, terrified parents who come into GQ desperately begging for information get a free pass from the official Spellchecker Mod. Just a hint. ;)
08-17-2005, 04:27 PM
I agree, but since it was mentioned Google was being less than helpful, correcting spelling probably is in order.
08-17-2005, 04:49 PM
Dear Duck Duck Goose, you are a gem, thank you for taking the time to provide valuable information, and to help me to realize that I am overreacting just a tad.
I spoke with my daughter a bit ago, and she had spoken with the ICU nurse. My sil will need to be on the respirator for a few/several more days, as well as antibiotics. He is heavily sedated (valium) but is responding to questions with nods and shakes of his head, as well as some hand movements, and is responding to pain stimulation, so my terror has subsided a bit. I can't get a plane off the island until tomorrow night (11:55) and that's if the weather settles down, which is so frustrating, my kids need me and I can't get there.
I am sleep deprived, and am currently on the ever so lovely prednisone, as the stress in my life has thrown me into a lupus flare. I read but don't post in GQ, but I knew that if anybody knew which direction to point me in for information, it would be a Doper. Generally I am fairly deft at surfing for information, but I went brain dead sometime around 3:00 am, and dove into a headlong panic.
I am going to try and rest for a while, my daughter went to the hospital to see her husband and I am waiting for her update. I will post more then, you have made several references I want to read with a clearer head before I attempt to respond. I have, apparently, lost my ability to spell, which is a good indication that I need some sleep! Thanks for defending me on that point also!
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