My avm don’t stop to grow. What am I waiting for? My AVM wants to kill me and I still end up fighting. Now it expands on my cheek and when I have more veins out of my skin. I’m afraid that these veins start bleed or It breaks and cause severe bleeding. Little veins are growing between my beard and I’m afraid to shave. Propranolol does not have the expected results and now I will taste a combination with another antiangiogenic called sorafenib
Luiscc I’m sorry you are having such a hard time . I wish things would get better for you.I’ve seen your pictures of your family, you have a pretty little girl. looks like a loving family. YOU STAY STRONG.
There is few research for AVM. ¿What can we do for this?
OH Luis! I’m so sad for you that things just continue to seem worse. I really wish there was something that I could say to help. I understand the fear of those little veins on the skin. Most of my recent bleeding has been from those exact type of vessels. They are so close to the surface and can easily break open. Just keep the surgiceal close!
I’m really concerned about the fact that the only treatment you are getting is the antiogenesis drugs. I understand that the hope is that they will keep it from continuing to grow (which doesn’t seem to be happening.) But what about treating what is already there?!?!?!? I really think you need to get some embolizations to bring the activity down and reduce the blood flow in your face. I do sincerely think that would help at least in the short term.
I know you said you emailed Dr. Yakes. But I think he had helped to open a clinic in Spain that also does alcohol embos. Do you know if that is the case? Can you go see them? What is the reason at the moment to just “leave” it be as it is now? Do they think embo’s will do more harm than good?
I know that it is hard to cope with the physical and emotional trauma of day to day dealings with the AVM when it is so active. Last year I was having a very hard time dealing. BUT, I’m feeling so much better now days. Sure the embo’s are hard to keep up on, but I think the continued series of embo’s IS helping to reduce the blood flow and to reduce the AVM. I feel like I am moving in the right direction. I’m not as afraid everyday. I don’t worry constantly about a bleed. I am able to be happy and live life. I want all of these things for you and for your beautiful wife and daughter!
You’ve been fighting. Fight with the embo’s as well and see if that makes a difference!
Lusi, good luck with whatever you decide. I hope that things get better. Hang in there my friend!!!
Shalon, you are truly a special and wonderful person. You’re always optimistic and
always smiling even in the darkness moments. My wife always tells me that you should
be my example to continue the fight. I only have 5 EMBO throughout my life
and have been very selective. The reason is the location and extent of my mav. Now
all the doctors that I visited told me that it can EMBO only as a last
a great resource to stop bleeding. I have one scheduled for next
May where they have to remove my wisdom tooth and have to be injected into the
femoral artery for an EMBO. I’m not sure that the dr. yakes can offer
nothing new. Dr. Mulliken recently reviewed my report and recommended me not to touch anything.
He Said me that it was like to have a bomb in my head that at any moment it can
burst. And it is better not to get too much. I really fear for the next
surgery because I have grave risk of death for bleeding. And I still have both
do I have so many wanting to see my daughter grow up and share my life with my wife. Even
my time has not arrived and I have to keep fighting. I think the cure for our
mav have to come for stem cell research. Our failures are mav
programming of our DNA and I am sure that when these cells can be reprogrammed
our mav no longer a problem.
Stay strong buddy. There is hope coming soon to the vast majority of AVM sufferers and Angioma related cases through a revolutionary treatment called ONYX LAVA. It was first invented in August 2007 in Australia and was pioneered on stroke patients at the Ohio State University in America. I am very, very fortunate to be part of an experimental group of AVM patients to take part in the treatment at the Queen Elisabeth Hospital In Birmingham England UK. I really think you should fire your doctors and seek to have it EMBO. At least this will relieve the pressure of the little bleeding veins and maybe reduce the swelling. E:mail me and I will show you my Photographs of what I now look like. I now have a new face completely different than the one in the photo that was taken 7 months ago before I embarked on my journey. I am sure that under the European treaty you can get refared from one countrys hospital to another in the UK. Dave The Face
Luis- I don’t understand why they are so against the embo’s. I know they are saying to leave it alone, but the embo WILL reduce the blood flow which is what you need at the moment. I’m really unsure why they wouldn’t want to at least do that. Obviously I’m no docotr but I don’t see how an embolization would be as traumatic or risky as surgery would, and I don’t see how it won’t HELP at least in the short term. I do think surgery and cutting could be really bad for you at the moment, but not embos.
You have a much better understanding of your situation than anyone else. Yes, yours is extensive…but not more than some other peoples. What exactly about your AVM makes an embo too risky? Of the options to treat, the embo has the lower risk at least from the perspective of bleeding. I’m confused!!!
I know you have been following my embo progress, and the difference in the amount of blood flowing in my face in the past year is drastically reduced. And this is because of the embos. That is the point of them regardless of which embolizing agent it will help to cut off the blood supply. And maybe it doesn’t cure it, but at this point you are just looking for improvement if nothing else!!!
I’m sure you have talked with them in length and they have explained why they don’t want to do the embo’s. I’m just concerned that they are having you do the drugs as part of the testing…and therefore not allowing or offering to also do the embo’s to keep “control” of their experiment! I sincerely hope that isn’t the case. But I’m worried for you and how the AVM just is getting worse and your fear of catostrophic bleeding. Embo’s shouldn’t cause any bleeding (or minimal amounts.) I don’t understand the doctors reasoning but again they are the experts. I just have a hard time accepting that and am not 100% confident in any doctors or their ideas about what should happen. None of them have the same opinions or ideas and that makes it impossible for me to feel confident in which one I should beleive/trust/agree with!
And yes stem cell and DNA could be key. But the science just doesn’t exist yet to have that be the cure. I don’t think it will heppen in our lifetime. Maybe the kids on this board but I’m not holding out hope at this point that it will be the answer for me. How wonderful if it was!!! Wouldn’t that just be awesome?
Anyways, I rambled. But I want you to enjoy your days with Serena and Frida without the worry of this beast! I know this is a tough road for you at the moment, and I know it has been for a while. I am glad that you have been able to enjoy your family, your trip to Mexico, your days taking pictures. I sincerely hope that you will continue to get to do that and that this AVM will not get the best of you. You ARE fighting and a fighter. Just keep it up and make sure you explore all “weapons” against this!
Oh, and the wisdom teeth…I’ve done that as well! I will admit it was one of my harder treatments only because of the combined embo and tooth extraction surgery. Too much time under anesthia to bounce back as quickly as I would have liked. But all in all, it was still ok. I hope yours will be smooth.
