I am a 43 year old man that recently was dicovered i have a “small” AVM in the Right Parietal Lobe. I have never had any symtoms or advers conditions from the AVM. It was discoved as part of a heart study.
Most of everything i am ready about avm treatment comes after a person suffers bleed or problems.
My surgen recomened to have it repaired but no real rush and has reviewd the two options for treatment: open surgery or the cyber knife. He stated he really woulndt recomend either one as being any better than the other in my case and said it would be my personal choice.
I would be interested in hearing on other experiences based on my condition.
From my angiography notes: Right parietal AVM fed by a parietal branch from the right MCA and
draining in a normal sized vein of Labbe ending in the transverse sinus.
The lesion measures approximately 7.6 x 4.4 mm. The lesion is Spetzler
Martin grade 1. There is no evidence of intra-nidal aneurysms or of
venous outflow tract stenosis.
As you probably already know, every case is different.
Since your Spetzler Martin is grade 1, it seems there is no rush to make your decision. I would suggest you get a second or perhaps even a third opinion. Hang in there!
Louisa gave you sound advice, Wheels. Getting a second opinion from a doc that has extensive experience with AVM's will only give you more information. Information is power when dealing with something like an AVM. All the best!
I'm in my mid-30s and faced a similar situation. My AVM (right frontal <2cm unruptured) was an incidental finding. I consulted with a number of excellent physicians at USC (neurosurgeons, radiation oncologists, etc...) and it was still very difficult for me to make a decision. Radiation has ~85% success rate and during the treatment window (3-5 years), you can still have a rupture. And even though it is super focused and precise, it's still some pretty serious radiation. So, I decided on surgery. I was an ideal candidate. The risk with surgery is upfront and in my situation, it was expected that I would leave the hospital cured. And that is what happened. I was diagnosed in the beginning of October and had my surgery in January. I was back to work 8 weeks later. The first week after surgery was pretty rough, but recovery was rapid thereafter. I am fortunate to have no lasting side effects. Brain surgery is scary and sucks, yes, but the problem is fixed and I don't have to think about it anymore. Best of luck with your decision. And as others have recommended, try discussing your situation with additional doctors if you are able to do so. Find a decent primary care physician too if you don't already have one and don't be shy about asking for meds if you are having trouble dealing with the anxiety. Also, whatever you decide, make sure you choose an experienced and skilled physician to perform your procedure.
Hi Wheels, I have to agree with both Tim and Louisa :) , If there's no rush then explore your options via a second opinion or third :) , Good luck, Take care
Martin
Welcome. I had a grade 1 AVM successfully removed from my right parietal lob on April 23, 2015. My AVM bled on September 2, 2014 and created a clot about the size of a golf ball so we wanted to have it removed before it bled again. Take your time and research your options. Good luck man...it's great to be alive
Hello Wheels
I can relate to your AVM issue. I am a 56 year old man, and have had 3 AVMs - in 1975 a "Massive" AVM was discovered in my right parietal area. This was removed by surgery at the Mayo Clinic Rochester MN in 1975. It "recurred" in 1977, which was a shock to me and the surgeon. My surgeon explained to me that this 2nd AVM was most likely caused by his decision to end my 1st surgery due to its length (over 12-14 hours) and his feeling that some vessels he had seen during surgery but not addressed would not cause any further problems. My second surgery by this same surgeon was in 1977 at age 17-18 (i turned 18 in the ICU). It was successful, but the surgeries did leave me with a seizure disorder caused by the scar tissue left behind. I slowly stopped having seizures, and at the age of 33 in 1992 I asked for an angiogram to rule out a 3rd recurrence before i stopped taking my medicine. I had no "feeling" about a recurrence, I just wanted an answer to my last angiography (sometime in the 1980s i think it was)which I had read the report by the radiologist and it had said "some abnormal artortuous vessels are noted in the previous surgical area but no AVM is noted" Ever since I had read that report, I always wondered if those vessels would cause a problem. The Neurologist in 1992 (when i was 33) was hesitant to order a "patient requested angiogram" and lectured me on this not being a benign procedure. He had not been my neurologist but for a few years, and only prescribed medicines for my seizures. He finally "relented" to use his word, and ordered the angiogram. This angiogram, much to his surprise (and mine), revealed a small AVM on the surface of my right parietal lobe. Thus, at age 33, I was faced with a decision: Surgery or do nothing but get annual (or less) angiograms and see if the AVM grew. This small AVM had probably been in my brain for decades, but knowing it was in there bothered me tremendously. After it was discovered, I found myself staring at trees and thinking, "I better enjoy seeing this while I can..." Once knowing it was there, I was obsessed with it and it took over my thoughts. The obsessing would probably have dissipated over time, but I decided to examine my options. I called the Mayo Clinic and asked if they would look at my films and provide me with an opinion. They did, and when I spoke with a surgeon at Mayo, I had a variety of documents on my desk about procedures (besides surgery) that had become available since 1977 to address my AVM. The surgeon at Mayo suggested the Gamma Knife Procedure (which is really seriotactic radio surgical procedure). I was intrigued, but I had the advantage over others such as yourself as I had already gone through brain surgery twice. When the surgeon, while trying to explain (or sell me) the Gamma Knife Procedure mentioned the cost of the Gamma Knife Machine, I was finished talking to him. I read a great deal about Gamma Knife, and was not impressed. It is touted as "noninvasive" and appeals to vanity "does not require your hair to be shaved" and while they mention what a "short" recovery time is indicated, this is a bit disingenuous. Once radiation is used, radiation kills cells in addition to the malformation. I was not convinced about how "precise" Gamma Knife Radiation was, it sounded too much like science fiction. What really disturbed me was that after Gamma Knife Radiation, I would be subject to yearly MRIs (in my case, since I have metal "clips" in my brain from previous surgeries, I could not have an MRI and would have yearly CT scans) to "watch" the malformation" change over time. The other thing I discovered about radiation, is that it is like a burn on your skin. Radiation alters the DNA of cells (hopefully just the targeted cells of the AVM). The tissues of radiated cells lose their ability to regulate fluids, and edema/swelling occurs. The proponets of Gamma Knife will say Gamma Knife Procedure may produce symptoms that are unpleasant, and talk about providing medicines (steroids for swelling/probably something for pain because swelling in the brain can cause headaches. Gamma Knife sounded fantastical to me. While it would have appealed to me as a teenager (who did not want to have his head shaved at age 16 or 18), it was not as easy for me to understand as traditional surgery. Surgery would involve me being put to sleep, someone cutting my scalp in a U shape to gain access to my skull, then opening my skull and opening the "dura" to gain access to my AVM. Then the AVM would be isolated, the vessels feeding it clipped with metal clips, and the AVM itself been removed by the surgeon. I opted for surgery, and went about looking for a well-known surgeon, as my surgeon at Mayo from 1975 and 1977 had died.
I found a surgeon at Emory University in Atlanta (Dan Barrow, MD) who explained my options (including Gamma Knife and Surgery). He explained he was a surgeon, and Surgery was his recommendation, which fit in with my plan, because I was not going to have a Gamma Knife procedure, have follow-up CT scans, and never feel that this was "over."
Surgery is no cake walk, and has risks of its own. But for me, it made logical sense, i understood it, and I had survived it before. I did have seizures after the first surgery, and even after the second, but these were controlled with medications, and again, my first surgery was for a Massive AVM, which let to long surgeries requiring a great deal of cutting and thus the risk for scar tissue was greater.
My last surgery was a few hours duration, and i was home within five days, at work within ten days of the surgery. in 1992 they did "angiograms" in the surgery suite before closing, and while this showed no "residual" AVM tissues or issues, I insisted on a post-surgical CT scan due to my [unusual] recurrences. This scan was clear.
Surgery is scary, and the phrase "brain surgery" conjures ups ll kinds of feelings of dread and fear. For me, it was the best choice. After surgery, due to my skull being opened and air being introduced into my brain (the skull limits the amount of space for the brain to reside, so any small addition of a tumor or even air can cause pressure resulting in very intense headaches. However, if you take the prophylactic pain medicines (i declined them in 1992 thinking I had no pain and did not think I'd have any pain due to headaches) you will not experience tremendous pain. Since I declined the medicines initially, when the pain did come in the form of a headache it was horrendous, but quickly addressed with IV morphine and the pain subsided. Other than the pain, I had no side-effects, and have not had a seizure in decades. I am no longer on the anti-seizure medicines either.
I'd choose what makes sense to you and what you are comfortable with. I make no apologies for being a proponent of surgery. I would do it all over again. I hope my experience helps you. Be patient, read a lot, get opinions of others, and no matter what you choose to do, make sure you get recommendations for surgeons who perform these procedures often.
I hope this is helpful...
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