August 18, 2002
Hi. My name is Eddie. I am 48 years old and was diagnosed with an AVM about 3 months ago. The diagnosis came after a lamp fell on my head and, after 3 days of headaches, went into the ER for a cat scan. Since then I have had an MRI and an angiogram. I have met with Dr. Michael Lawton, a neurosurgeon in San Francisco, CA. My AVM is a 3 on the scale of 1-5, and though borderline, I am told it is operable. Dr. Lawton has laid out my 3 options; 1) do nothing, 2) radiation, or 3) immediate surgery.
After the 2 months of tests and doctor appointments I decided to take some time off from the ordeal and not make any decision for at least a month or 2. Last week I came down with a virus and suddenly found myself with a horrendous headache and blurred vision. I was taken to the ER. A ct-scan revealed no bleeding.
My question is this... Though I believe Dr. Lawton to be an excellent surgeon and expert in the field, he has done little to help me make a decision. At this point I have no idea which of the 3 alternatives to pursue. Any help would be greatly appreciated.
Update: 18 Aug 2002
I've been home from the hospital for 2 days. I was at Stanford for my second embolization. After just reading stories like "No More!" (Pamela Tippins, 30 Jul 2002), I am having some serious second thoughts about the decision to have this thing treated at all. I was first diagnosed with my 4 cm AVM back in February after a heavy piece of glass fell on my head, sending me to the ER for a cat scan. Before then I had little in the way of seizures or symptoms.
When it all first started my first inclination was to do nothing. I had lived with this thing for 48 years with little or no problems. As time went on, and I met with more doctors and listened to more stories, the decision to go ahead with 2-3 embolizations and ultimately the surgery, was made. The first embolization went fine. The AVM was shrunk down 30%, and the immediate side effects from the procedure were virtually non existent only a day after it was over. That was a week and a half ago. This past Wednesday I went in for embo #2. This time they say it's shrunk 75%. The headache during and in the 15-20 hours that followed the procedure was excruciating. Now, 4 days later, my peripheral vision is still significantly reduced, and shadows and motion and light shows are constant.
The decision to have another embolization or to do the actual surgery has not yet been made. At the moment, I'm wondering why I ever let anyone stick anything in my brain at all. Perhaps it's way too soon to jump to any conclusions, and perhaps I'm panicking a bit. On the other hand, I'm wondering if going ahead with the surgery is such a bright idea after all.
Well, that's my updated story. Hope to hear from you guys
Update: 8 Sep 2002
In my last update I was waiting to hear whether I would be going for a 3rd embolization. Whining about the after effects of the 2nd embolization, I was also wondering whether it was wise to let them touch any part of my brain again. Well... as the days passed my eyesight began to improve and my headaches began to fade. Finally, my Doc returned from his week long vacation and in the last week of August I was told the last embolization had gone wonderfully and the next step was to go ahead with the surgery.
The surgery took place September 3, only 5 days ago. After 8 hours of surgery, and another angiogram, I was told that they believed they were able to remove the whole AVM. Two days later, another angiogram revealed that my AVM was completely removed. I am cured. My eyesight is as it was after the second embolizations, but I am confident it will return at least very close to normal, if not fully normal. I am still in shock. I cannot say enough about Dr. Steinberg and his team at Stanford.
My arms feel like pin cushions, my neck hurts, my groin hurts, my head aches a bit, it's 4am and I can't sleep... and I feel like the luckiest person in the world. Thank you so very, very much to all the people that have been so supportive over the past 9 months. This site is more important than I ever realized. I hope I am able to help others like others were able to help me. Thank you.
Update: 5 Nov 2002
Post AVM/craniotomy update.
It's been 2 months since the surgery. My rate of
recovery during the first 4-5 weeks was incredibly rapid... so much
so that I decided to ween myself off the Dilantin. If anyone is
considering such a thing, don't. The docs and info on the web is
right on with this one - or at least it was in my case. Anyway, it
was the first big lesson since the surgery. The 2nd was, don't
drink alcohol. I had nothing until last week. I was in a convention
in Reno, Nevada. The first few days I drank. I ended up on the
floor of a casino surrounded by paramedics. (If your AVM was in
your vision center, you haven't lived until you've had a major
visual seizure in the middle of a casino).
It's been 6 days since that little incident and I am doing fine. Next week I'll see the epilepsy doc to review my current meds (and get scolded). Quitting booze and doing meds for 6 or 12 months - or even forever, is no biggie. I have a friend who's been on dilantin for 30 years and he's the happiest guy I know (well, he was until his wife was diagnosed with a brain tumor and colon cancer - but that's another story).
Anyway... all in all I am doing great. Oh... one last thing I learned. I'd love to hear what other people say about this topic...
I've always known to some degree that stress can effect you physically (duh), but I never imagined it could be to this degree. My vision and seizures are so directly affected by stress it's downright bizarre. With each increase in heart rate, my peripheral goes down another inch and I move that much closer to seizure. Maybe this whole thing has been God's way of making me a calm and patient person. It's working. For anybody that's ever been into any form of meditation (and for those who haven't), it's a great way for controlling seizures (but, of course, doesn't replace seizure meds - unless you're a Christian Scientist.
I hope everybody out there is doing OK today. I continue to get to know more people from this site and it's been wonderful. My journey would have been that much more difficult without the support of of the people I have gotten to know from this site. You know who you are. And to the ones I haven't met - I've read some incredible narratives. I truly believe our seemingly nightmarish experiences are for a reason, and that we all come out wiser than we were before. What once was almost shameful, is becoming a badge of honor.
Update: 12 Mar 2003
It's been 7 months since my AVM was removed. I am still seeing an epilepsy specialist who continues to modify my anti-seizure meds. Seizures are nothing like the old days, but still occur if I don't take my meds. The problem is the meds (Keppra) can make me painfully tired. Seizures are relatively mild (hand/arm numbing), but my big thing is still related to vision. My peripheral vision can still get pretty nasty at times, and I still get the light shows, distortions, and squiggly lines.
That said, I am still extremely happy to be alive. My vision has greatly improved, though I'm not sure how much is improvement and how much I have adapted to the problem. It is amazing what the mind/body can accept and get used to.
Other than that, my biggest gripe is dealing with the system (insurance company, SSI, and the DMV). My license has been taken away, yet keeping disability is proving to be a challenge. I've been a computer programmer my whole life and there's no way I could put in the hours in front of a computer screen like I used to, but by saying I am able to go back to work do they mean I am able to do some other work that doesn't demand so much on the eyeballs? It's confusing.
Anyway, just wanted to update you guys with my latest status.
Update: 5 Jun 2003
Hi all. It's been almost 3 months since my last update so I thought it was time. I am continuing with my regular visits to an epilepsy specialist. As a matter of fact, I had an appointment today. I've been on Keppra and Trileptal for a while and neither is really alleviating the seizures. I'm still getting the light shows and crazy shadows and hallucinations on my left side, and my peripheral vision frequently goes down to zero.
Today the doc came up with 2 alternatives which I had never heard before. The first was the vagus nerve stimulator. I've been researching this procedure on the web and it doesn't sound like much fun. If anyone out there has been through it, please drop me a line. The second alternative was surgery (Not Again!!). The purpose would be to remove scar tissue that he believes is causing these problems. He has scheduled an MRI and is talking to my surgeon about the possibility of another angio (my favorite.) He also mentioned the possibility of a 3 day stay in the hospital where they'd do a continual EEG.
I speak to one of you who had the craniotomy over 2 years ago, who had a similar AVM to mine, who continues to have these problems. Are there any others out there that continue to have problems long after the surgery? My surgery was on Sept 3, 2002. My epilepsy doc says it is abnormal for me to still have the symptoms I am having, yet he says everyone is different, and it is not that unusual for my metabolism to be such that the meds aren't helping.
My biggest problem with the meds have been the side effects. Keppra puts me into a dead sleep, and trileptal makes me real dizzy. I would love to stop taking everything for just a few days but my doc goes a little nuts when he hears me say that.
Considering the stuff that some of my buddies on this site are going through I hate to whine, but if any of this rings a bell for any of you, please drop me a line.
Update: 22 Jul 2003
A number of the people I speak to on this site are where I was a year or 2 ago; trying to decide whether to go ahead with surgery, radiation, or doing nothing. I've been a little reluctant to talk to anyone about the latest news from my doctors, as I don't want to scare anybody who is trying to make the decision about whether to proceed with a craniotomy. From what I've learned, those who have operable AVM's are very lucky, and in many or most cases, will and should go ahead with the surgery.
That said, here's what's going on with me... Visits to my epilepsy doc since my surgery in September, 2002, are usually pretty predictable. He asks me lots of questions, does the DUI sobriety test (touch your nose, follow my finger, etc, etc), and finally, makes a small modification to my meds. Back in early June (see update above), the Doc surprised me with the 2 suggestions for alternatives to medication; 1) Vegus Nerve Stimulator, and 2) Surgery. At this last visit a couple of weeks ago his suggestion was stronger and more detailed. This time he suggested, after discussions with my surgeon, that perhaps the best way to proceed would be to have 2 more surgeries. The first would be a long procedure where they go in and create a map of the "trouble" spots of the brain that are sending out the weird signals. In the second surgery they would remove pieces of brain tissue at the trouble spots. Both surgeries, I was told, would be longer than the original 9-10 hour ordeal to remove the AVM. The "success" rate of this procedure is 50%-70%.
Considering all of the horrible things that could have happened to me (paralysis, blindness, death), my quality of life is quite excellent. There is no ticking-time-bomb-AVM in my head, and I almost never get headaches or any pain associated with my x-AVM. I do live with fairly frequent (but mild) seizures, and significant vision issues (I call them issues instead of problems because some of them are actually not-too-bad and even fun. Shoot, I get to see 4th of July fireworks much more than once a year. Aside from the light shows, hallucinations, shadows, and diminished peripheral vision, probably the biggest change in my life is not having a drivers license.
Is there anyone out there that has been through this phase? Has anyone been through this procedure? Is there any reason to even consider another 2 surgeries? A year ago the issue was, well... if I don't have the surgery I could drop dead in a month... a year... in 20 years... and I've got a 5 year old son. Now, (I think) the issue is if I don't have the surgeries I may never have my license back, I will continue to see wierd things, and continue to have mild seizures. As always, input from you guys is most appreciated.
Update: 24 Feb 2004
I'm still living with seizures but I have seen some significant changes in the last 7 months since my last update. I'm no longer averaging a seizure a day. The routine now is that I'll go a day or 2 or even 3 with nothing, and suddenly I'll get hit with a flurry, one right after the other, lasting up to hours. The doc says that the change in seizure patterns is not an indication of anything; that it's quite "normal" (whatever that means). Yesterday happened to be a bad day as seizures filled at least half of my waking hours. I'm still on keppra and trileptal, and now, with these latest nasty seizures, they've given me lorazepam to knock me out when they get really bad and persistent.
Anyway, life is still good. Though the seizures can be a real annoyance and depressing at times, I've learned to live with them and accept them as part of my life. The doctor still offers a "cure" in the way of 2 more surgeries, but unless they get much worse I just don't see it being worth the risk.
Well, that's my latest. My seizures are as visual as ever and my peripheral vision still closes down to 0% on my left side after a nasty seizure or 2. Flashing lights, funny patterns, and occassional hallucinations still haunt me, but there's almost never any fear like there was in the ol' days. Perhaps the fear was the worst part.
I know many of you are still struggling and are not as lucky as I have been. My prayers and thoughts are with you. For those still going through the symptoms I've described, 2 or 3 or more years after the surgery, please write and share your thoughts and stories.
Update: 12 August 2004
It's going on 6 months since my last update. Things haven't changed too much since then. Seizure frequency is about the same with some surprises here and there. Yesterday I woke up to a juicy visual seizure that went on for over 3 hours. After talking to the nurse, I finally crammed a few lorazapam down my throat. I just awoke from a 10 hour death sleep and yes, the seizure is gone.
My last doc visit was a couple of weeks ago. He reccomended one med (I've already forgotten what it's called) that has the side effect of the possibility of kidney stones. Uh, no thanks. In general, he still says the only way that he sees to completely get rid of the seizures is to go through 2 more surgeries, and of course, there're no guarentees.
So, that's my update. Life is good, though I can be a moody SOB at times. Most of my seizures are such that I can joke around even while they're going on, but after an hour or 2 or 3 of no peripheral vision, light shows, and spooky characters walking to my left, it can kind of get to you. Sometimes I truly wonder if I'm, perhaps, losing a touch of my sanity.
My best wishes and prayers to everyone out there.
Update: 24 January 2005
Damn seizures. I saw my doc last month for my 3 month checkup. Actually my doc was on the golf course or in Hawaii or something so I met with one of his associates. Same ol' thing... if you want to go back on meds, it's up to you... want to have surgery?... it's up to you... want a vagus neve stimulator gizmo... up to you. Why do I always have the feeling I'm treating myself.
Anyway, I've been off all meds for 5 mos or so ('cept the good old Larazapam which gets rid of a seizure by rendering you unconscious). I'm thinking of going back on Keppra but then again... I just switched to Medicare and of course they don't pay anything for prescriptions (not to mention Medicare will probably be in the toilet in my lifetime).
But life is good. Seizures are tolerable for the most part, I have a wonderful, healthy, brilliant, and talented son, two annoying but wonderful stepsons whom I love dearly, and a good woman who holds my hand and leads me to the couch when she finds me sitting on the kitchen floor staring into space.
As far as my seizures, they're still about the same frequency as they've been in the last 6-12 mos, but I just noticed a new interesting change. In the old days my left forefinger would always twitch like crazy when a seizure was about to start - then the psychadelic spins would begin. The finger twitching thing went away for a year or so - and suddenly, tonight's seizure started with the dancing forefinger. Man, these things are so weird.
Best wishes and prayers to everyone - and to those old friends I haven't spoken to in a long time, drop me a line (don't be offended if I forgot your name... some days I forget my own).
Update: 9 January 2006
Wow, it's been a year since my last update. It's been 3 years and 4 months since the surgery and I still have frequent seizures. I've gotten to know them so well, though, that they've just become part of my life (and as I've said before, the real visual ones are actually quite fun). My new neurologist is very much for moving ahead with epilepsy surgery to hopefully rid me of seizures completely. At almost 52 years old I wonder whether my poor body could endure another cranial invasion. Anyway, without the surgery he tells me I'll never get my driver's license back.
Well, that's my brief update. My best wishes and prayers to all of you that are struggling through AVM nightmares.
Please feel free to write and let me know how you're doing.
Update: 29 May 2006
Just wanted to say thanks to all the folks who send such wonderful emails. Life is still the same as the last time I updated, with the exception of my new neurologist who has prescribed Valium suppositories for those nastier seizures. So far I've been either unwilling or incapable of actually ingesting the medication during a seizure.
Update: 13 September 2006
I just did something I haven't done in a very long time. Read my own narrative. I can't believe I've been writting about this stuff for over 4 years. Wow. Anyway, the latest in my continuing saga...
I'm not supposed to go into the details so, suffice it to say, I got hit in the side of my face a few weeks ago and fell to the floor (like a 2 by 4 as it was described to me) leaving me unconscious for however long it took for the ambulance to arrive. After 10 days of migraines and vomitting, the concussion subsided and transitioned into 3 days of virually constant seizures.
My doc (GP) put me on a new anti-seizure med which resulted in scalp to bottom-of-feet blistering, pustular sores. Wait, I'm not quite done. The blow I received also caused nerve damage in my jaw, which, I am told, will require 3-4 root canals.
Update: 12 November 2006
It's 1pm (October 10), I've been awake for 5 hours, and not a trace of a seizure. This is the first day like this in weeks. Seizures and visual adventures have become quite plentiful in recent weeks/months. I am scheduled to see a new neurologist at Stanford next week. As it was explained to me on the phone, they will run me through a battery of tests over coming weeks/months to determine if epilepsy surgery is an option.
The flurries of visual episodes I've had over recent weeks has worn me down. Some days I just give in and knock myself out with a couple of mg's of Lorazapam. With 3 kids to take care of, it's getting more difficult to give the illusion that I have a clue what I'm doing.
All whining aside... I have found a few articles on epilepsy surgery and there are some encouraging results cited. I've probably asked this before, but has anyone been through "epilepsy surgery?" Has anyone gone through the surgery because of an occipital lobe AVM? Are there any occipital lobe AVM'ers out there who's vision, even 4+ years after the surgery is still screwed up?
Hope everyone is doing ok.
Update: 10 December 2006
I believe another fork in the AVM journey is approaching and I could use your help. I am currently seeing 2 neurologists, one who is suggesting surgery to remove the residual scar tissue left from the AVM dissection done 4 years ago, the other who believes the location of the scar tissue makes surgery far too risky. No decisions will be made before the results of my January 2, 2007 MRI are in.
It looks like my decision will be 1) surgery, 2) continue medication, or 3) chip implantation. The integrated chip implant into the skull was a new one I just was informed about, but is starting to make the most sense. As I have become more and more knowledgeable about treatments and reasons for seizures, it just seems that although the drugs are "cures" for some, they appear to be such a haphazard attempt to fix the problem. Personally, I've had horrible luck with a number of medications and have suffered a number of side effects. Is it possible that a computer chip can record and recognize the brain patterns, and further correct them and prevent seizures? In general, epilepsy experts and neurologists I have seen, seem to promote pharmaceutical treatments. Sometimes I wonder how many of these guys have stock in these companies (sorry, I think Topamax makes me paranoid).
Actually, I've been on Topamax for only a week, and unless I'm just plain losing my mind I am finding some interesting side effects; dry mouth, diarrhea, moodiness, things taste funny. Who knows. Maybe it's me. If the kidney stones hit than I know it's not just in my head.
If anyone has any thoughts on this chip implant or any other seizure treatment ideas, please drop me a line. I always love hearing from you guys.
Update: 22 February 2007
Holy Moly. Has it really been over a year since my last update? I thought it was more like a couple of months. This thing really is effecting my memory.
Here's the latest in my continuing saga...
My visual seizures continue and both neurologists I've been seeing were recommending surgery and/or a chip implant.
About 2-3 months ago my Stanford neurologist sent me to UC Davis for an MRI (supposedly their machine is higher power than what they have at Stanford). The day of the MRI I was told the results would be immediately available online for my doctor to review. In the 2-3 months that followed I called Stanford no less than 6 or 7 times. I was told they had seen the report but not the film. The report only said that I was still AVM free.
This morning they FINALLY told me my doctor had seen the film. The report stated that my scarring is extensive and surgery would almost certainly leave me completely blind. For those facing AVM surgery, please don't be discouraged by my story as I was told that I am in a small group who are left with such scarring after surgery.
Well, the good news is at least I feel like I've gotten some answers and I guess the next step is to try whatever medications I haven't tried yet (there aren't many). I guess nothing much has changed but the news has left me with a touch of self pity... so what better place to turn than my AVM and aneurysm family.
Update: 12 March 2009
It has been 2 years and a month since my last entry. The journey just keeps getting "better". Stanford, who had determined that epilepsy surgery was not an option since it would leave me completely blind, changed their minds about 6 months ago. Below is the letter I just sent out to a bunch of online neuro-somethings. If anyone has any comments or input regarding the EEG issue, please drop me a line.
Dear Dr. ????????,
In early 2002 I was diagnosed with an AVM after a CT-scan was taken for a totally unrelated reason; a concussion as a result of a large thick piece of glass falling on my head. I was 47 at the time. The AVM was 3.5-4.0 centimeters and resided in my occipital lobe. I had some vision anomalies and dizzy spells over the years prior, but no symptoms to speak of. After significant research and talking to various neurologists and neurosurgeons, I went ahead with 2 embolizations and ultimately, the surgery for the resection of the AVM. The procedures were done at Stanford University.
The surgery was successful, however, I was left with intense visual seizures. The first year or so after surgery included frightening hallucinations and overwhelming seizures. Seven years later the seizures are not as bad as they were, but still persist.
Immediately following the surgery I was labeled an epileptic, and was treated by the epilepsy specialists at Stanford (and 2 other medical offices). I have taken at least 6-7 different anti-seizure meds over the years, and virtually none of them were effective (high doses of keppra and trileptol were somewhat effective but caused me to sleep the day away).
In 2006 3 of the neurologists I was seeing concurred that the best solution was to have "epilepsy surgery". Stanford sent me to U.C. Davis for an MRI (higher res than what they had at Stanford, I was told). I was to get the results the next day, but despite numerous phone calls, Stanford did not deliver the results for over 2 months. The nurse representing the neurology dept. at Stanford, and who is responsible for communicating with patients on the phone, informed me that she regrettably had bad news. My scar tissue had actually spread and surgery would almost definitely result in complete blindness and no surgeon would perform such an operation.
In 2008, after being examined after a couple of months of elevated seizure activity (frequency and intensity), one of the neurologists at Stanford decided that surgery was plausible, and further, I would lose minimal vision (my left peripheral vision is already next to nothing). Further, this doctor had just secured a government grant to do some study regarding the relationship between EEG's and MRI's of epilepsy patients. I was told since the reasons for my epilepsy were clear, and they already had a series of films of the scarred area, I was a perfect candidate for the study. Once completed, the information that was to come out of the study (a 4 hour EEG and 2 2-hour MRI's) was to be used to proceed with the surgery.
Yesterday, Wednesday, March 11, 2009, I went in to Stanford for the EEG. The EEG was 1.5 hours (not the 4 hours I was told it was to be). The results were "normal". The EEG showed no seizure activity. The doctor in charge of the study was quite surprised and was extremely confusing in his diagnosis. His explanations were that either the origin of the problem was deep inside my brain and the EEG wasn't picking up the signals, or, I needed a 7 day hospital stay with an ongoing EEG, or, I simply did not have epilepsy. I had never before had an EEG at Stanford. After 7 years of being treated for epilepsy he was telling me due to a 1.5 hour EEG that I didn't have epilepsy!
When I arrived home I jumped on the computer and googled "can eeg show nothing if you have epilepsy" and other such phrases. I was presented with a surprisingly long list of articles, blogs, and other writings that discussed the topic. Many say a normal EEG does not mean you don't have epilepsy, and a "positive" EEG does not mean you have epilepsy. Other articles explained how seizures do not necessarily mean you have epilepsy.
My main question is, "What is wrong with me?". My seizures are 90% visual and sometimes, totally debilitating. Some days are better than others. I can go a whole week with very little in the way of seizures (visual anomalies occur daily, regardless of seizures). I can go a week with the worst seizures since post-surgery days. If this doctor says I don't have epilepsy, who do I go to to be treated?
After 7 years I realize more than ever that I need to take control of my own treatment. I am also seeing a neurologist and neurosurgeon from UCSF. I'm hoping to talk to them today to get some feedback about yesterday's EEG results.
The political aspects of dealing with USCF, Stanford, and others, has been demoralizing. UCSF will trash Stanford, and visa versa. Even within Stanford, doctors will disagree and bring the arguments to a personal level. All I want to do is be cured, or at least, get these things under control.
As I continue my journey to find help, any advice, comments, or suggestions you may have would be most appreciated.
Sincerely,
Eddie Brayman
Update: 21 August 2009
Last week I spent 4 days in the hospital with a bunch of wires glued to my head and a video cam following my every move. In the 7 years following my AVM surgery, an EEG was never done. Now, after 7 years my doctors found it necessary to record my seizures. During the 4 days, I was not allowed to sleep more than a few hours/night (they called it sleep deprivation something) and was encouraged to ride an exercise bike, all in the efforts of triggering a seizure. Of course, no matter how hard I tried to race my heart, and exhaust my body by not sleeping, the seizure(s) never came. By the end of the 4 days it had been 8 days since my last seizure. After I returned home, 5 more seizure-free days followed making that over 2 weeks, probably the longest no-seizure spell in 7 years.
Three days ago the 17 days of no seizures ended with a 10 minute spectacular twirling, spinning, colorful roller coaster ride. I had 3 that day, 2 or 3 the next day, including a 30 minute blinding spinning light show, and a pretty juicy one this morning.
The weird thing is without the EEG evidence of a seizure, the lead doctor on the team doesn't think I'm having epileptic seizures at all. He further says that the numbing of my arm, which accompanies virtually every seizure, has nothing to do with my head, though he can't say what it might be.
After a week or 2 with no seizures, and listening to this particular doctor, I start to question my sanity and wonder if I am still having seizures. Then I get hit and there is a tinge of relief when I'm reminded of just how real these things are.
Discussion, comments, or questions: Eddie Brayman
© Copyright 2002 Eddie Brayman
All Rights Reserved - Fair Use
acknowledged
