Colin Derdeyn, MD, chair of the leadership committed for ISC 2016 interviews Christian Stapf, MD about the results of ARUBA, which were presented at the meeting in Los Angeles.
Dr. Stapf is my doctor and I am part of the ARUBA clinical trial. I consider myself to be very lucky to have him and the entire team at CHUM looking after me. I was part of the group that was treated for my AVM and I consider myself to be very lucky. I’m not certain what my life would have been like without intervention, but I know I didn’t want to live with the uncertainty of this disease. I now understand the importance of healthy living, not smoking, stress management, staying physically and mentally active. All things that we already know become so much more important after this diagnosis. I find it amazing what is being done to help understand AVM’s. I would like to thank-you all so very much. Linda
If you discover you have an AVM before it ruptures, please realize that this is a gift. You have the chance to make choices. My daughter was 9 when hers ruptured. No warning signs. Just fine one minute and then a nightmare. Three years later and she’s made a lot of progress, but she will never be what she could have been.
My unruptured occipital AVM, operated in 2009 let me with quadrantopsy... I have no regrets, the 2 years betwen diagnosis and operation I had many strong headaches episodes, always afraid that it was a stroke. Lots of stress!! I was 19. I can't imagine to live rest of my life thinking "I was so unlucky of having that rare disease... I could be even more unfortunate and be part of that 2% annual risk"
Hi I'm glad your part of the Aruba study. Can you tell me what treatment options they gave you? I've got a front left temporal avm (large). I've had radio static surgery but I'm getting lots of new symptoms since recieving my treatment. Could also give me some details of a possible doctor for help? As my neurologist and neurosurgeons are very undecided just like the reasons they started the Aruba study. Sorry for all the questions but I'm getting alot worse with my seizures, balance basically I'm going threw alot. I hope your well and getting better 😊
Sorry to hear my daughter was diagnosed with AVM 3 centimeter after she never in 28 years never be sick or something suddenly started with seizures and everything changed and we find a excellent neurosurgeon in Stanford hospital in Palo Alto Ca and she started with her first Embolization last week and in February 28 the second one and so far she its quite okay hopping for the best for her and for the decision she took and I hope you are better!❤🌵🙋♀️
My suggestion would be to do a crap load of research and get as many consultations you can before you make any decisions. And remember what is right for some people, may not be right for you. Best of luck!
Given this result, does diagnostic imaging, i.e. arteriograms, make sense, given the associated radiation? Is it best to simply wait until, if, rupture occurs?
My brain AVM ruptured without complications and was surgically removed. I have no disabilities or issues a decade later. I felt almost 100% within weeks after my surgery and you can't see my scar. I'm now worried about my son having an AVM syndrome that I passed to him. We both have a singular telangiectasia. Mine on my hand. His on the lip. I worry so much. I worry about him having a bleed but I also worry about surgery complications. I was told a 10% mortality rate for my surgery which is about the same mortality rate for AVM bleeds. I'm utterly lost on top of knowing that it it will be a struggle to even get a neurology referral over a broken capillary on his lip. It's my mom intuition and I'm weak with dread
My wife had an avm rates 4 on the Martin soetzler... One episode of stroke in May 2020... Nuerosursurgery done in December 2021... No stroke after that... But I'm still worried because she gets headaches regularly... What do others think?
I was diagnosed with a brain AVM in 2003. After lots of consultations with top-notch specialists, I decided to leave it untreated. And here I am 17 years later posting on youtube. LOL
The ARUBA study is probably the most frequently denounced study by neurosurgeons who know AVMs, for several reasons. 5 years is far too short to observe for spontaneous AVM rupture, you need at least 20 years of observation to get an idea of the lifetime risk of AVM rupture. Second, most patients were embolized rather than having surgery or multimodality treatment. Third, there were far too few patients in the study to draw such firm conclusions as there are many AVM subtypes. Every AVM is different, every patient is different. If you have a brain AVM, see an experienced vascular neurosurgeon for the best possible opinion.
See more than 1 neurosurgeon. Always get a second opinion. Half my neurosurgeons say they can't operate, some say they can. I choose to wait, been living with my unruptured AVM since 2001.
Are you have seizures? My daughter 28 was diagnosed WITH AVM an never ruptured 3 centimeters and she is taking Kapra for seizures she went for her first Embolization last week praying for her and for the decision she took!
My boyfriend has this. He had zero symptoms before his siezure. No hemmorage. They operated and how has terrible headaches and can't see well out of his right eye. He hates his life. I wish we never went through with the surgery
This is trying to be offensive. But i wonder if you take a large dose of hypertensive medication(like lsd, coke, ect) and it would blow out small avms and force brain to create new blood vessel connections. Its considere a stroke but may be less than putting knives in brain.
Paradoxon maybe try CBd and anti inflammatories. Also low dose fish oil. Red meat also has high tmao which causes inflammation. Poultry and fish are better
My son is an AVM patient and is age 49. He has had a total 4 surgeries beginning at age 18 month and finish at age 3.5 . He continued follow up for many years but that stopped at age 16. Fast forward to 2015 when he had a stroke and lost all short term memory. Since then he was treat with gamaknife receiving 3 treatments. One week ago his followup angiogram show only 10% of the AVM remains. We are not sure if we should repeat a treatment with gamaknife or stop any future treatment. Just followup about every 3-4 years.
I'm so sorry about your son. What does your son think he should do? In my very humble opinion if he is 49 and seems to be doing well overall, I would not repeat treatment. But that is up to him and his doctor.
5 years? Once again, "first do no harm". It's always tough when medicine spends millions of dollars, and determines that nothing should be done, hence medicine loses billions of dollars- not a self-serving argument. 5 years wouldn't seem to be long enough to draw any conclusions, but I know these guys design their studies, to tease out valid conclusions. These are the guys that do "God's work", holding medicine accountable to good science and medicine, and reign in the natural human predilection to "do something"!
