In next few weeks I need make a decision at to next step in treating my AVM (above speech/motor center). Had seizure/stoke almost a year ago, spent time since in rehab (learning to walk again) while MDs did embolization of one vein.
So, I am interested in hearing reflections on experiences either with cyberknife or with brain surgery. Results.. .surprises…lasting side effects…eradication of AVM? Any thoughts will interest me.
Hi Elizabeth. It's a very difficult question. First I would recommend you get at least one more opinion and make sure your doctors are very familiar with treating AVMs. The decision to treat mine was out of my hands. I had a major bleed and was comatose when they recommended a series of embolizations followed by a craniotomy to my husband. I consider myself lucky not having to make the decision. Ask your doctors what possible defecits you may encounter with each treatment. Be as informed as possible and make sure you feel confident in your team of doctors. Good luck.
My doctor performed my embolization by going through my artery. He placed glue in the area to close the vein. He was prepared to do an open brain if you was not able to close it or access the vein. I thought this was safer
I agree that you should seek another opinion. I was told by the head of neurosurgery in a very esteemed hospital that my only option was cyber knife. I did a lot of research on it and quite frankly it scared me to death. I sought a second opinion from dr Robert Spetzler Barrows Neurological Institute in Phoenix. The grading scale for AVMs is the Martin/Spetzler Scale. It cost $100 for the second opinion … Best $100 I ever spent. Dr Spetzler contacted me within a week and agreed with my local Neuro team of the severity of my situation. He did however disagree that it was inoperable. Ten days later I flew to Phoenix and he removed my AVMs. I asked him about embolization and he said it would be easier for him if we embolized but harder on me if we did it. This man saved my life. 7 weeks out of surgery I was 20 feet up a tree deer hunting. People reached out to me during my delima from the old West Georgia AVM site (it’s shut down now), and I credit those folks with saving my life as well. Their advice was invaluable. If you would like to speak with me on this subject please feel free to call me at 618-■■■■■■■■. I owe so much to so many I feel it my obligation to help you if I can. God bless and good luck I whatever you decide. Larry Thatcher
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Elizabeth, you apparently are a long time survivor of having a cerebral AVM. I was diagnosed in 1975 after a couple seizures. My neurosurgeon at the time gave me the choice to 'wait & see' as he said there was promise in the new laser technologies being developed for brain surgery. All I could think was I under no circumstances wanted brain surgery. If I could put it off, I would. I was lucky in that I managed to live with my AVM without any serious effects, except for terrible migraine headaches. In the early 2000s I learned of cyber knife treatments for AVMs. I consulted with a few folks, had my first MRI on my brain (yup, AVM still there). There were various choices, but my new neurosurgeon said the jury was out on whether or not an AVM should be treated after someone hits their mid-50s. That was enough for me to put off doing anything. Then, in 2008, I was away from home downstate working on some property of my family's, and I had a rupture. My AVM was in my left occipital lobe. I was flown by helicopter to VCU Hospital in Richmond VA (I live in Arlington, VA about 100 miles away from there). Due to the bleed, I had no choice but have my AVM treated. An interventional radiologist from the University of Virginia, who only does cerebral embolisms, did the first phase. She went in and plugged up the veins leading to my AVM (ruptured, but at least it had stopped bleeding). Oh yes, I was put to sleep for that. The next day I rested (can't remember anything particularly painful about that part). On day 3, I had a craniotomy performed and my neurosurgeon removed the "dead" AVM and a 5-inch blood clot from my brain. I don't really remember being in any particular discomfort after the surgery. It was much worse to have the rupture (as I am sure you experienced having a stroke). I was back to work in about 4 months. It took a while to feel more like myself. I will describe the deficits I had from the AVM rupture (and maybe surgery): Because my AVM was in the part of my brain that controls the right side of my vision, I had some vision loss. It is often described as a "visual cut" -- boils down to my vision near the left side of my nose and the far right corner of my right eye don't see things. I don't notice it, except when I see a big screen TV that is priced for $250, and then I realize that my vision cut off the last "0" on the tag. :) It did cause me to have a bad problem reading. Of course, in my job, I read out loud, so I worked on that with PT, OT, and speech therapy. Because of my rupture, a few other areas in my brain were affected. Weirdly, some were small sorts of hard-to-tell things (except for me). I seemed to lose some of my ability to spell, I have a bit of dyslexia (When writing, I will automatically flip letter, like typing "Pebber" when I mean "Pepper"). I was also diagnosed with Dysarthria, a speech disorder caused by a weakness or loss of control over the muscles in the face and mouth that control speech and breathing. I had a great speech therapist who helped me get that pretty much back to normal. One of the worse things was I really could not read easily. With the visual cut, I could not follow the lines of words, I would lose track, it was very bad. Believe it or not, I worked to regain my reading ability -- just kept trying to read -- and it probably took two years, however, I can now read for pleasure. It is the miracle of neuroplasticity! Newspapers still give me fits (that light gray print can be hard to read). My office was great and got me software that was a text reader -- I used it for long documents I needed to read and also proof stuff I had written. Also, when I went to PT (I was a little weak on my right side), my PT also would work on the area of my incision to loosen the scalp around it so it would not contract and be tight feeling. I did not get my hair shaved in the area, they just put my hair into two pony tails (my kids begged them to leave my hair alone). I wish I had had it shaved (1) when else would I have had a good excuse to look kind of punky and (2) it hurt a lot when the stitches were removed and the junk from the incision had dried onto my hair strands. I know, yuk. One other very annoying side effect was that I had overwhelming fatigue for months and months, maybe almost a year. My Occupational Therapist was very helpful in working with me on ways to conserve my energy, including convincing me to use one of those scooters available in the grocery store, not bothering to put dishes away on high shelves. It takes a LOT of bodily energy for the brain to heal. During that time, one goes through a ride of fatigue and the best thing is to take lots of naps. Now back to you: as you have probably read often, everyone with an AVM is different, and how you decide to treat it is based on a number of things: how large is your AVM? Where is it? Are there more than one? Is it located in a place that the risk of a certain type of surgery or treatment is more recommended? I was very lucky -- between the embolization and the brain surgery, my AVM was completely obliterated. I was also pleasantly shocked to learn what it is like to not always have a headache (my head always hurt, even when I was not having a migraine). The down side of neurosurgery is that it is invasive and it is major surgery. Many spend 10 to 15 days in the hospital. But the up side is that after surgery, hopefully it is OVER. No more AVM. The upside of cyber knife is that it is less invasive, it is usually done on an outpatient basis, and it is not major surgery (considered a low risk procedure). Downside is that after treatment you wait months and hope that it works. I had one arteriogram after my surgery (to make sure nothing was leaking). You may have to have more than one to monitor the progress of the cyber knife treatment. I also read once someplace that Cyber knife treatments on AVMs were not as successful on older patients, more successful on young adults (I tried to find where I read that on the internet, but found nothing, so it may not be the case -- ask your doctor). Between you and me, as much as I had dreaded the thought of having brain surgery since I was 24 years old, today I wish that I had gone ahead and had it when I began looking into it @ the early 2000s. Before my AVM ruptured. That probably caused more damage and complications. I would have probably blamed the neurosurgeon for losing my right eye sight (which doesn't bother me at all now), but because of the rupture, I blame everything on that. So it is sometimes hard to get an AVM treated without some side effects -- some temporary, some lasting. And I do have a permanent indentation on the back of my skull, plus 3 titanium mesh plates and 3 titanium clips in my brain. But overall, my head feels better than it ever did in my entire life. And the brain surgery just wasn't as dreadful as I had anticipated. Frankly, I can hardly remember it now (it has been 6 years). Now you need to hear from someone who would vote for cyber knife. And a lot of your decision is based on what you feel you can tolerate -- the "wait and see" of cyber knife, the more serious nature of brain surgery. Neurosurgeon are partial to surgery; interventional radiologist are partial to cyber knife. If you have a really good Neurologist, make an appointment and talk about what he or she believe could be the lasting side effects of your treatment and what -- if they were you -- would their preferred treatment. Write me anytime you need support or have questions. It is a journey we all would prefer to wish away, but I hope when your make your choice, it will feel right. Take care and God bless, Sharon Davis
I learned a lot from your reply. Thank you.
Elizabeth, first of all welcome to your new life. In December of 2004 I had an AVM to rupture. It was deep inside the brain and inoperable. The Drs. gave me three choices. Wait and see if it ruptures again. They were already expecting me to die from the first one so I didn’t consider thst option. 2nd option, embolization. My Neurosurgeon said it could be done but any skip in any direction of any small significant amount could result in complete paralysis. Not to happy with that one. Third choice: radiostactic therapy. They would shoot a high dose of radiation directly onto the AVM and it would shrink, die and dissipate within a year. First year checkup, did MRI went to visit neurosurgeon, he came in and stated greet news…it hasn’t grown any over the year. It hasn’t shrunk any either, but sometimes it takes a little longer than a year to show progress. Next year, same diagnosis. Next year the same now Almost 10 years later and still no change except that the blood is starting to flow back through the part of the brain where the rupture occurred. They don’t seem to concerned but I have a few misconceptions. If there is a hole there, wher it ruptured 10 years ago and you have not fixed the hole, where is the blood going to go to? Also during the time of the radio therapy we discovered that the shunt was not in the correct place and lots of fluid was building up in the brain causing severe headaches. By the time I could find someone else to look at it I had started to stutter and walk very badly. Which led to crutches to walk with. Not sure if from the radiation or the incorrect placement of shunt but either way, it was no fun at all. The stutter is about gone unless I get angry or try to talk too fast but still need crutches to walk. Trying to get rid of them so I can walk my baby down the aisle in December without them. I still have bad days and horrible days. It’s amazing that you look forward to the bad days. Headaches galore that last all day every day but then some that come on, with no warning and feel like the worst brain freeze ever. The sometimes feels like the little transvanian devil off of Lonny tunes wrapped in barbed wire just running loose and banging off the side of the skull. These can last any where from a minute to about 3 minutes but feel like an hour or 3 days. They zap me if all my strength. Then I have the thunderclap headaches where it sounds and feels like somebody has shot me in the head with a rifle. The first one I had I was driving down the road and heard a rifle shot and felt like I had been hit in the head. I pulled over and looked for blood, but realized there was none, then came the nausea. I have had quite a few since, with other people with me and I ask them hit they hear the shot, but they never do, which I can’t understand because it sounds and feels so real. Sorry I couldn’t give you any good news, but it’s been 10 years and I am still getting out of bed in the mornings, when I can and i look at the top side of the grass everyday. And if the sun comes out and I go outside, I see my shadow, do relatively speaking, that is GREAT. News. Hope you find the answers you are looking for and hope all turns out well for you. Here is hoping you have a Blessed day tomorrow and for the rest of your treatment.
I am 54 years old. My AVM was in the middle of my brain. At 22 years of age I had it removed through Brain Surgery. It took about 3 mouths of rehab. I forgot how to pronounce words. I also was anxious. Anyway, I have worked in As a Technician in Behavioral health. It was a rough road to climb, I see my scar every time I look in the mirror. But I am thankful I am alive. Continue to Pray To Jesus for guidance and streagth. Buy the way, I am still working at the same job for 28 years. Also, don’t take Advice from one Doctor, hunt around, it is your life.
God Bless.
Five years ago I had my AVM removed at the age of 52. I am now 57 and I'm thankful I had cyber knife surgery as well as four embolinzations before removal. Offered other procedure but was afraid it might kill good brain cells so went with cyber knife. Not sure what doctor recommends for people who smoke could be riskier I guess. Amazing what doctors can do today, just make sure you have the right doc with a group of individuals that come highly recommended. Hope this helps with your decision and I wish you all the best.
Hi Elizabeth,
Doctors accidentally discovered my AVM early this year. It was located on the left occipital lobe, on the area that could affect my peripheral vision. I consulted four different neurosurgeons about the curse of action. Two of them recommended a craniotomy, one an embolization and one a cyberknife. Of course, all of them told me that at the end of the day, I needed to make that decision. I did some research about the different options and I was really more scare about the potential side effects of radiation than the effects of a craniotomy. However, my craniotomy was not going to affect motor or speech functions; so, it's a different case than yours. I had a craniotomy early in june. I was on the hospital only 4 days. I spent the first three weeks sleeping most of the time and slowly went back to "normal". I am now back to work but still get tired. My only problem is that I have vision deficiencies and it can take up to a year for me to fully recover my vision. I think that overall, I made a good decision and I am very thankful that things went well. Good luck with whatever you decide; look for second, and third opinions.
Elizabeth,
I too had the option of a crainiotomy, or radiation. My neurosurgeon pressed for the surgery. Any good surgeon would. Anyway, he stressed the risks of radiation. The process could take as many as two years. During that time, I would be at an increased risk of a bleed that could kill me. Radiation had to be spot-on. Each treatment had to strike the AVM. If it struck health brain tissue, the results might not be known for years.
On the other hand, a crainiotomy would remove the AVM permanently. I wouldn't have to worry about it. There wasn't much discussion of the side-affects. One of which is double-vision. Something so rare, even my surgeon didn't think to warn me of it.
While I am glad that the AVM is gone, I wish I had gone to those who have experience with radiation so that I would have more information.
cyberknife is a vehicle for radiation. I had radiosurgery before the cyberknife was invented. The radiation came via a cyclotron at the Berkeley Lab - state of the art treatment in 1988. Because of the long period for effectivness, doctors prefer conventional surgery if the AVM is not located into tricky a place. In short cyberknife (radiosurgery) is an option for inoperable cases.
I am post op 16 days from having my avm removed completely at Barrow Neurological Institute in Phoenix AZ. I live here and was lucky to have the best place for my surgery.
Mine began to bleed giving me stroke like symptoms of my left arm. Dr. Taro Kilibara felt I was a difficult case however we had no choice but to remove it as it did not respond to steroid therapy to reduce swelling, it continued to bleed/grow in size and symptoms became worse.
Located right where my motor skills are, there was risk of course. I have had a great outcome, with use of my arm/hand, still numb some but I can grasp/and move my arm/hand. We expect a complete recovery over the next few months.
Yes, please seek another opinion at a Neurological Hospital.
Patrice
Hi Elizabeth. My AVM needs to be treated. I have just heard from the hospital that further surgery is a no go for me owing to the shape and complexity of it. I had Stereotactic Radiosurgery (gamma knife) in 2010 and they were hoping that over the years it would slowly get to work. Sadly it didn't work for me but hopefully it will work for you.
It was a discomfort having the frame fitted. I was nearly sick. It felt as if my head was being crushed but after a few minutes you almost forget it is on. Besides, the fact you have a metal cage on your head. The procedure itself is completely silent and nothing can be felt. I was in the machine for three hours listening to music. Have a look at my vlog about my stereotactic radiosurgery:
https://www.youtube.com/watch?v=UeL0VznAi-c&list=UUTUfjg-H7kFoiX4PsQlPUuA
All the best,
Sam
Elizabeth...I totally agree with Trish's response. I couldn't have said it better!
Elizabeth,
I know right now this seems like a dilemma, but how awesome is it that we live in an era where you actually get a choice in how you get treated? At least, that's how I tried to look at it when I was in your same situation nearly two years ago.
I saw a neurosurgeon and a radiologist at the University of Iowa, and a second neurosurgeon at the Mayo Clinic. More than anything, I was comforted simply by having the individual opinions of each one of these doctors. The doctors at the University of Iowa suggested surgery, while the neurosurgeon at Mayo said that either was fine, although he recommended the Gamma Knife. With radiation, I knew I was in for about five years worth of treatment. Sure, the individual sessions would be relatively painless and I could walk out the same day, but I didn't like the idea of having to deal with this abnormality in my brain for so long. I wanted this problem to be done and over with as quickly as possible. So I went the route of brain surgery.
My surgery went well, and I had a great recovery, so I can't say that I regret my decision. I did have a seizure this last week after nearly a year of being off of medication, so back on the Keppra I go. I also had a series of 3 seizures one week after my surgery, but that could be attributed to a too-rapid drawdown of the steroid I was taking.
Basically, if you are a conservative and patient type of person (which I am not), Gamma Knife could be your better option. If you like having things done and over with, then surgery could be for you. I was lucky enough to have an AVM near the outside edge of my brain, which made either option viable.
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Sara....Love your reply! We must research and the final decision is yours to make...We are here to support you!
For what it's worth I had this same dilema in April and I'm about to undergo my first (and hopefully only) Radiation treatment. The reasons behind my decision is that my AVM is very close to the Motor Strip in my dominant hemisphere - that and the seemingly very high rate of Epilepsy development following Craniotomy have steered me down this route.