I have some really exciting news. Monday July 10th 2017 while getting my second cerebral angiogram the doctor told me that my AVM is GONE! The cyber knife radiation treatment I received 13 months ago killed it WAY earlier than expected. It was supposed to take at least 2 years to get rid of it. They really blasted this thing to get rid of it, so I’m still suffering from severe brain swelling from the cyber knife radiation treatment so I get dizzy, nauseous, and headaches often. The next step will be to get Avastin treatments to get rid of the brain swelling from radiation necrosis. Such a huge relief to not have to worry about the AVM causing a brain hemorrhage! It’s just so painful dealing with the headaches and migraines from the brain swelling I can barely function. I have just been taking Tylenol and using ice packs for now until I can hopefully get the Avastin soon. Does anyone have any suggestions for getting rid of the headaches from brain swelling? It’s awful. I’ve tried everything.
I have to point out that without the immense support from my family, friends, and AVM support groups that I may not even be here. I hit such a rock bottom low of depression constantly scared for my life that I thought I had no quality of life left to live. I thought one day it would rupture and my life would end any day, like a ticking time bomb. I may have lost some vision and hearing and had to work my ass off to remove the steroid water weight, but I’m so happy to even be alive and that this thing can’t kill me now. Just have to get rid of the brain swelling now from cyber knife. it doesn’t seem to want to go away.
This is great! I’m really pleased you’ve got that sorted. I’ve no idea about the necrosis or the treatment, so I hope one or two others can help but it’s really, really good news you got the AVM busted!
Great to hear that Alyssa! I know you’ve had a heck of a battle on your hands and this is great news. Now best wishes in the next phase, and I’ll be thinking of you. Take Care, John
I am so very happy for you. What elation you must be feeling now! I have read each one of your entries and replies since you began on this site. Thank you for being so diligent to record your journey for others. Joy!
Hi Alyssa,
Just read your post and it’s made my day! So very thrilled to hear you are AVM free. Hallelujah! You must be so delighted with the speedy repair.
I’m in my 6th year of my brain AVM, first lot of gamma knife surgery did not obliterate the AVM, second gamma knife treatment was in sept 2015, and I’m due back at Royal Hallamshire hospital, in the UK for my post surgery cerebral angiogram test in 2 months time. So we will soon see what my AVM’s up to!
I am happy for the AVM being removed! Now to headache part. I hate to tell u bad things but I want to be honest. I had my AVM ruptured on November 10, 2014 and by God’s love, I’m a walking talking miracle. Since that date, I have had a headache everyday. I know some people say that but they only have them maybe 2-3 times per week, but I have literally had it everyday. The only thing that helps is hydro codeine and that just numbs the pain. My state just approved medical marijuana so I’m going to try it. I did get better relief with tramadole but that caused seizures. I think u have better chances since yours was not a rupture. Hopefully u will get relief. Let me know how everything goes.
God is good all the time, and all the time, God is good
Zac
That’s great news , I had AVM surgery on 15 May 2017, I’m due a angiogram in August to check its all gone . I had pulsitis tinnitus in my right ear. hence then MRI done and found a front right lobe AVM. Surgery was successful . Felt tired for a month or so, but seem back to my normal self I think. But glad it’s sorted and gone now , what a relief
I am so so happy to hear that your AVM is gone! I read a few of your posts over the last few months as I struggled for answers and hope for my little girl who has an AVM. I am sorry to hear you are still experiencing headaches and other side effects. Have you ever tried oxygen therapy? I know this probably sounds lame, but I was recently had a spinal tap to rule out meningitis and it left me with a sever debilitating headache. I had all the goods on hand: Excedrin migraine, caffeine, ice packs, heat packs, tiger balm and a few other things, but the one little thing that helped me was peppermint oil. I couldn’t believe it, but it helped tremendously. I would rub it on my forehead, neck and around my nose and I got real relief. The headache I experienced was from low cerebral spinal fluid. It is known as a lumbar headache and is severe upon standing. I could only lay down which I did for 12 days. I know it is not the same as swelling, but this little trick may help you! I can’t wait to see another update from you soon that says your headaches are gone. Hang in there! Your my new inspiration as I really hope my daughter has the same response to her gamma knife less the headaches of course! You have so much to be happy for and you are so young! We are sending love your way from just over the Delaware River!
Aw this brings tears to my eyes. I bet your little girl is such a trooper. One doctor actually did suggest the hyperbolic oxygen therapy but that it would take upwards for 8 hours per session for weeks, I guess she was basing this off of the amount of brain swelling I still have. Same here as well, I constantly have Excedrin migraine, Tylenol arthritis, steroids, ice packs, heat packs, etc on hand. They only seem to sometimes take the edge off for maybe a couple hours. Peppermint oil, interesting! I’ve never heard of it but I just bought some off amazon and will give it a shot. Thank you so much! I have a good feeling about this. I will keep you updated. Give your daughter my best wishes, if you ever have any questions don’t hesitate to ask! Radiation isn’t an easy road. Didn’t realize you’re so close to me! Lots of love right over the Delaware River!
I´m so happy for you ! Everything will be fine ad you won´t remember any of this in a while, or you´ll just remember it to value life even more and life it to it fullest
Fantastic news, Well done. Its been great to see how strong you’ve been through it all here, Another day and another success story . Brain swelling will go down with time, I have headaches every day from damage that happened during my bleed, But with the right medical help its not too bad and much better than it was , I’m sure you will continue to see your doctors regarding any lasting effects and they will get better with both time and docs help. Take care
So nice to get your message! I actually found the peppermint oil in the headache section of my pharmacy and it is indicated for headaches. It’s worth a whirl! As for the hyperbolic oxygen therapy, I don’t have any experience with this, but it was highly recommended by a pediatric neurosurgeon (Dr. Edwards) at Stanford who we met with in the event Olivia (my daughter, 9 yrs old) has swelling. He recommended this over steroids and from what little I read it can REALLY help brain swelling and aside form the downtime, there are no side effects. When I mentioned this to the docs on the east coast they said there very little data etc., so my sense is it isn’t as popular out here & the local docs don’t have too much experience with it, but that doesn’t mean it might not work. I know it sounds awful to lay in an enclosed small space for hours on end, but people bring books, laptops, ipads etc & chances are it wouldn’t need to be 8 hours a day. It might be a challenge finding a doctor that knows about this, but I suspect is could be worth the effort. You’ll need to see which medical centers offer this near you & find a prescribing doctor. I know our little local hospital offers it (Bryn Mawr) has it, so hopefully it is near you too. I know from your posts you have really been struggling & I really hope you get relief some how, some way! You have friends over here if you ever need anything!
Interesting! I will take a look in my pharmacy as well. That’s exactly what my doctors told me about there being very little data. It must just be the east coast doctors not knowing as much as the doctors elsewhere yet.I will mention it again and suggest Byrn Mawr and if I can’t get anywhere I will explore else where. Thank you so much!
