Wondered once you had the AVM or DAVF oblierated by whatever means can you say that really is gone and worry no more and likely now not to happen again as you had your whole brain checked for any other malformations so chances now same as someone that has not had this happen or maybe better as you have now been checked over. I am assuming so cause got life insurance without any penalties.
Hi Daven. A follow-up angiogram is probably the best way to see if an AVM is obliterated. Most of us refer to it as The Gold Standard on here. Brains are usually done developing by age 25 so that the AVM will not reoccur. I hope this info helps.
cool had angiogram 3 monhs after bleed showed it had oblierated had another 18months after to also confirm it stayed that way was then told that it wont come back after that period of time mine was a DAVF though. Just wish all this fizziness in the head would go alway makes you think maybe its come back but cant keep getting checked every month as that would do you no good anyway I guess.
Hi daven. For my experience, obliterated means that in that moment the avm is with no blood activity, which means that the risks of an hemorrage are quite low. It doesn’t mean you are cured for life. They are number of cases in medicine literature that talks about recurrent reocurrence of an avm even those which were cirurgical removed. There is an organic process called angiogenesis which means that your brain is constantly developing new vessels. I hope that that clear you up. Once you have an avm, you need a control for life. Best regards
Also depends I say how it disapeared in my case it blew it self up so had no surgery done and was a DAVF so guess little different was told after year and my follow up angiogam if not returned by then it wouldnt so no more scans scheduled so I have been lucky as after that time it was all clear for me. Perhaps if using onyx etc follow ups are more likel;y required.
My daughter's Spinal AVM was "obliterated" and when we went back a year later for a follow up angiogram they found some tiny feeder vessels that had been missed due to massive edema in her spine. We did yearly angios for 2 more years and now we do yearly MRI's with an angio every 5 years. I hope that helps.
Thanks Margo I should of mention earlier that mine was a DAVF which thrombosed itself needed no treatment it disapeared on its own few weeks after it bled so I guess thats why they say after a year happy to say I am cured which they have so been lucky i know. Still suffer what I can only describe as a strang head feeling after nearly 18 months but been told nothing to be concerned about but it is annoying.
Mine was irratiated and declared obliterated almost 23 years ago. Doctors don't even want to follow-up on me anymore.
Life insurance took a while, but now I have it. I wouldn't apply until you see a form that says in the past ten years have you.... If you get refused that is another question on the form.
However, during my last insurance application they wanted a complete history of my AVM, got it and still gave me a better rate than my wife who is two years older.
I am happy to hear that you are cured, that is awesome! I hope that those strange feelings will go away and you can return to normal. My daughter's journey with her spinal AVM has be a long and difficult one. This all started when she was 9 years old, she is now a beautiful 14 year old young lady and is leaning to live with her disabilities. She is strong but during these challenging teenage years having a condition that makes you different is hard. You wouldn't know there is anything wrong from looking at her but she has a neurogenic bladder and has to catheterize herself every 3 hours, she can't really run (she used to play soccer) and has loss of feeling in parts of her legs and buttocks among other issues. This group has been a life saver for both of us, just knowing that you are not alone and that someone understands what you are going through is huge. Most people have never heard of an AVM. I am always happy to hear a success story, stay well!
Thanks Steve.. I was lucky enough to have insurance on a normal standard rate after a year from the the bleed think mainly once again cause needed no treatment and a letter from from my neurosurgeon saying I was cured and even saying 0 percent returning with proof from Angiograms and Mri and my davf wasnt due to any other condition.
All the Best
Hi Margo
I cant imagine what that would be like she is a brave young lady and I wish her the very best in life and hopefuly things will improve in time for her she is young so I would be hopeful as she gets older things will get better and easy to cope with. She is a special young lady god bless.......
Dave
Thank you Dave...she will be fine and I remind her all the time that she is a Survivor!
I had embolisations and a craniotomy many years ago and had a final check after 5 years. It is gone.
My AVM is quite rare because I know the reason I had it. I have an underlying genetic condition calked HHT which means I have pulmonary AVMs (monitored)that are not treated, but even if I didn’t would scanned every 5 years in case new ones are formed. There is no scan but I just need to look out for problems with my liver. I’ll lever be getting cheap travel insurance, but I’m lucky to be in U?k so don’t need separate medical insurance like in the USA.
Guess each of us different I am good as cured and need no more checkups after a year and half of it not returning to be honest I think will always worry it might come back but I guess if they say gone and wont should get on with it cant keep having scans if they think not necessary. I am probably like everyone else I still get weird sensations in my head sometimes and headaches so constant reminder of it thats the issue so always makes you worry.