hello friends i need your help please
i had surgery to removed avm on april 24 today i got my 3 month follow up mri result that radiologist said i still have a avm me and my neuro both ar surprised but my neuro said he doesnt think so but will have to angiogram to confirm the result
after long hours of surgery and long road to recovery having soo much issue after surgery cant even think that i still have it
anyone here have any similar stories and heared about that after craniotomy avm still there i heared that they take out everything and avm never regrow then how come i have it again really confused cant wait to do angiogram and find out the true
after surgery from week 4 i having shortness breath and its continue to now and found i have asthma soo after deal with soo many issue how can accepet that i still have it i am really heartbroken dont know what i am writing really upset after hear the result
I completely understand why you are so upset. I had a similar experience with my AVM. Mine could not be operated on because of its location. My only option was Gamma Knife Radiation. I was told that the Radiation would take up to 3 years to eradicate the AVM. During those 3 years, I had MRI’s. MRA’s, and CAT scans. After each test I was told they saw no trace of the AVM. I was so, so happy because to me, if they couldn’t see it on the tests, it had to be gone. Then I had my second Angio and I was told that I still had 50% of the AVM in my brain. I was so disappointed because I thought it was gone. I thought it was gone because they did not see it. When I got over my pity-party, I dusted myself off, and told myself how lucky I was that the AVM had been reduced by 50%. And, 50% is dam good if I say so myself. There are no guarantees with these AVM-monsters. I think our doctor’s are doing the best they know how for us, but sometimes AVM are harder to treat due to location, size, and circumstances. Hang in there. Keep us informed on your AVM-journey. All of our journey’s are different, and we may take different pathways to reach our goal of being AVM-free, but we must journey on. P&P (Prayer & Patience) is much needed on this journey. Use it often. Wishing you the best.
Thank you Sharon i will update after angiogram hoping that mri result is wrong
my avm wasnt deep and its was on right temporal lobe dr said it will be best to do craniotomy to removed it all and it easy for them get there
what you did with your avm did you had more gamma knife ??
are you cured now??
nilima41, Gamma Knife Radiation got rid of 50% of my AVM, and the other 50% is still in my brain and I pray it is continuing to shrink. I was to have another Gamma Knife Radiation procedure next month in August. However, my doctor’s want to wait a little longer to do the procedure. They are fearful that doing more Radiation right now, could possibly damage healthy brain tissue. They are quite pleased with my results to date, and I am quite anxious to have the AVM gone. Good luck to you.
i want to update if anyone want to hear result of my angiogram was normal no more avm left so MRI result was wrong i will see my neuro on september 10 for finall paper work then live my life
thanks to everyone in this group who helped
i am really happy to live avm free
That is fantastic news… the angiogram is the best way of checking from my understanding… God bless!
sorry to hear that my friend. I had a avm fistula repair via craniotomy in 2011. I had post OP 6 month fallow up angiogram st scan when they told me I was cured. I misunderstood apparently I had to do another one a year from that date/I witch I did not do . I was suppose to do another one a year from that date. so now 7 years after I am about to do another angiogram ct scan to make sure everything is ok.
Hi! I wanted to tell you I am in the same place as you. It has been 18 years since I had my craniotomy and was told i was good back then. I got a scan just to make sure before starting to try to have a child and the radiologist said the same as yours…like you I am devistated with that news. My neuro md is unsure of that diagnosis so in october i will have an angio to confirm of deny the oppinion of the radiologist. I hope my outcome is the same as yours! I am so happy of your outcome!! YAY!!
dont worry i pray everything will be fine i was waiting for confirmation to have baby i hope you get that too i hear radiologist did this to many people soo its better to do angiogram to make sure everything right best of luck to you !!
sorry maybe i dont understand if you are cured then why you need surgery again i hope your angiogram result come good its soo scary to go 2nd time