Dr. Ajith Thomas, MD (Co-Director, BIDMC Brain Aneurysm Institute) at Beth Israel Deaconess Medical Center in Boston provided an update on “Treating AVMs” at the monthly” Brain Aneurysm Foundation” Support group meeting in Boston on May 14th, 2014. Below is a summary I put together and wanted to share with you. Please do keep in mind when reading thru this that this information is summarized by me and by no means is coming from an expert in the medical field. This is information I tried to capture from the discussions at the meeting which you may or may not have and hope you find this summary valuable.
There are several types of Vascular Malformations and depending on the type and the symptoms that are presented; treatment options can, do and will always vary from patient to patient.
The most common vascular malformation are Cavernous Malformations. These malformations may be hereditary or they may occur on their own and is not a “direct” connection between the Arteries and the Veins as is the case with other vascular malformations such as ArterioVenous Malformations (AVMs). Cavernous Malformations are abnormal clusters of dilated blood vessels and most Cavernous Malformations are monitored unless the Symptoms present themselves consistently and frequently. These symptoms include: Seizures, Weakness in arms or legs, Vision problems, Balance problems, Memory and attention problems and Headaches. Generally speaking, Cavernous Malformations are often incidentally discovered and research suggests these should be followed with MRI scans annually for two years, then every five years thereafter. Surgical removal must be balanced against the risk of no surgery, on an individualized, case-by-case basis.
ArterioVenous Malformations (AVMs) are less common and is an abnormal and “direct” connection of Arteries and Veins where blood flows directly from the Arteries, with very High-pressure, directly into the Veins without any intervening Capillaries. Research shows that Brain AVMs occur in less than 1 percent of the general population and are usually congenital, meaning someone is born with one. Most patients do not even know that they have an AVM until severe symptoms such as; Seizures or that “worst” Headache of your life present themselves. Research shows that AVM patients usually present themselves with the following Symptoms: Hemorrhage (50%), Seizures (25%) and Headaches (15%). Imaging is now so much better compared to what was available many years ago! AVMs are now visible on outpatient imaging studies such as CT's or MRI's. Angiograms are also an important inpatient procedure that is needed to image the Arteries and Veins before any treatment options are recommended and discussed with you.
Treatment options for AVMs include: Observation (watch & wait), Radiosurgery (Radiation), Surgical Removal, Endovascular procedures (Embolization) OR a combination of these methods.
Coming up with treatment options for each AVM case is a very complex process for our medical team and is so important to remember that they CAN and DO vary for each and every patient which are studied and put together by your medical team on an individualized, case-by-case basis. In some cases “Observation” (watch & wait) may be the best course of treatment. Observation alone may be appropriate and the decision for this depends on an understanding of the risks of treatment and the risks of non-treatment as well as the risk of hemorrhage by your medical team.
Radiosurgery (Radiation and also referred to as: Radiosurgery or Stereotactic Radiosurgery) is a Non-Invasive way, and done on an outpatient basis, to treat AVMS. This treatment option consists of a single high dose of localized Radiation and administered thru various types of procedures available from your medical facility including: Gamma Knife, Linear Accelerator (LINAC), Proton Beam, CyberKnife and probably others too…but I’m not a doctor. Radiation treatments uses precisely focused Radiation to destroy/obliterate the AVM. The Radiation causes the AVM vessels to slowly clot off in a one- to three- to five-year period following the treatment. Therefore, it’s very important to note that this treatment option does take time (1 to 5 years) before an “AVM-FREE” report can be given to patients. This treatment is most appropriate for small AVMs and all come with potentially different side effects given the differences in how the radiation is administered and the overall prep for each of these.
Surgical Removal of AVMs is considered based on the Spetzler-Martin AVM Grading System which studies many variables prior to recommending Surgical Removal to the patient. This Grading System estimates the risk of open brain surgery for a patient with an AVM and does so by evaluating some variables including: AVM size, Pattern of Drainage, and Eloquence of brain location. Here is some additional information on these variables: Size (small; <3cm = 1, medium; 3 - 6cm= 2, large; > 6cm= 3), Location (Non-Eloquent = 0, Eloquent = 1) and Pattern of Drainage (◦Superficial only = 0, Deep = 1). A Grade 1 AVM would be considered as small, superficial, and located in non-eloquent area of the brain, and represents a low risk for Surgical Removal. A Grade 4 or 5 AVM is large, deep, and adjacent to an eloquent area in the brain and may present a higher risk for Surgical Removal. A Grade 6 AVM is considered not Operable.
Please always remember that each AVM case is individualized and unique and are always studied on a case-by-case basis as there are no two AVM,s alike. Therefore, please do remember this when receiving inputs from anyone, but your AVM Medical Team, as what may be relevant treatment options for one patient; may not be relevant to your unique AVM case. It is just so very important to place your Trust in your AVM medical team as they are the experts who are selflessly working so very hard on Your behalf.
Endovascular procedures (Embolization) is a procedure done through a catheter temporarily inserted in the groin which places a glue like substance (Onyx) or other substances right into the abnormal vessels of the AVM to help close them off. Research shows that while there have been several AVMs that have been cured with this procedure alone, it is most often used in conjunction with Surgical Removal or Radiation to reduce the size and flow of blood to the AVM, thereby sometimes (depending on the recommendations from your AVM Medical Team) making other treatments more effective.
I'd like to share a funny story on this... I did have the Embolization treatment when my undiagnosed AVM presented itself with a rupture. I now like to leverage this with my family & friends....At times, when good & not-so-good discussions arise ...I sometimes tell them this: "Don't get me going now or I just might come Un-Glued" :-))!