The more I read the more I am scared. Are there people who had few symptoms, discovered it because of headaches or focal seizures, had something done, and returned to "normal" like they were before it was discovered?
Hi KSUCat-although I am the furthest thing from “normal”-and proud of it, especially since it seemed close to forever to get to being proud of it-I, personally, know that I will never be the same person I was pre-life-changing experiences; however, I don’t look at it as scary. Terrifying? Yes-kidding:)
Do I sometimes miss the old me and what I could do fairly easily without even thinking about it? Yes, totally.
If I should go into my pity-party mode where I flop on the bed, cry, kick and scream and start to think otherwise, I will hopefully remind myself, read something, or someone else will remind me that this or these obstacles will make you a better person-believe it or not-on this journey of life.
some of us weren't very normal when we started (grin).
Maybe this a convoluted way to look at things, but I spend about a day every other week at the local cancer center while Chari takes chemo. On the surface, it sounds bad, but she runs only a 10% chance of recurrence following chemo. She's 59.
I look at young kids at the center with no hair, knowing what they are enduring. When I see that, most of my "problems" don't seem so significant any more.............
There were people on the Network that had an AVM, got treatment or surgery and are back to where you call "Normal". Why are they not on the site anymore??? Because it's been over and done with and they don't visit the Network anymore. Just stay strong and positive!
Ron-I represent that remark
Thats what I needed to hear. I've been very healthy and lucky for 40 years and then all the sudden bam! I had no control of my leg at times and headaches. I go to the ER and as the ER doctor told me he had good news and bad news. The good news was there was not a tumor, cancer, or bleeding. The bad news was this is in my head and has been since birth. It has just now decided to rear its head. I have not heard much other than the three options of surgery, radiation, or the polymer glue stuff, or the combination of two. Even though it hasn't bled I want to get it out and on with my life. I want to work, drive, and not worry about every headache.
As Louisa mentioned once you are well…members usually do not hang out on this site. And that is a good thing…they move on with their lives!
I was diagnosed with my AVM in April 2011. I was able to put off treatment until after school was out for the summer. I had my first (of three) Gamma Knife radiation treatments in June 2011, at which time they also found an aneurysm. I had a craniotomy to clip the annie in July 2011 (and they also found & clipped a 2nd annie). I had GK #2 in December 2011 and #3 in June 2012.
I returned to my teaching job at the same time as the other teachers in mid-August 2011, only used 5 days of sick leave in the 2011-2012 school year.
So far this year, I've only taken one personal day--haven't missed any days with migraines, doctor appointments, etc.
So far, the only thing I'm NOT allowed to do is SCUBA. And it was a good excuse to NOT be on the faculty dodge ball team a couple of weeks ago!
Hi Barbara and Louisa-that’s exactly what a few ICU people and Rehab. Therapists said-not too many survivors come back to visit. They hardly get to see the progress; but, I have to think, that that’s a very good thing, too.
I was diagnosed with an AVM in July of this year after having an unrelated aneurysm rupture. After my Annie ruptured and was fixed I was able to go back to my normal every day life (with the exception of dealing with some PTSD). I still have an AVM and at this point in time we have deicded to hold off on any treatment at the moment and wait until the new year to see how I feel.
My mom’s co-worker had Gamma Knife to treat an AVM she was experiencing symptoms with and is totally fine now. Has no issues with it what so ever and was able to go back to normal every day life.
I was diagnosed in may 2011 and my only symptoms were headaches. I have had 5 embolizations and a gamma knife since then and my only side effect is some minor vision changes and I still get a headache here and there, but my avm is not yet gone. My life is different than it was before but I wouldn't say that its any less normal. I have continued to go to college and personally I feel better now than I did before. everyone's avm is different therefor everyone is going to experience different things
I am newly diagnosed and have the same questions. I thought I had experienced very few symptoms but now I am doubting that due to daily headaches that I previousl attributed allergies or stress. I have also noticed a significant issue with short term memory over the past 5-6 years, again I attributed that to age and job related stress. A big part of my carer and life relies on public speaking and the ability to be strong intellectually. Knowing that it will probably take radiation treatments to my brain in order to get rid of this is very scary. I have a young family that I need to continue to provide for.
... and then there are those who went through it, got better - accepted that they are as normal as can be, and have visited this site every day since they came out of ICU. we don't all leave this site, never to return!
i wouldn't know one survivor who didn't have a deficit - minor or major. all i know is that i love this site because its full of inspirational (and better than normal) survivors
Good morning, My daughter was diagnosed 2 yrs. ago due to what we thought were migranes. Although she is not avm free yet, She is well on her way. She is "normal" she would kill me for saying that! She does have some memory issues but who doesn't? Life after treatment will be a New normal! You will learn to compinsate for things and you will absolutely have a new appreciation for the little things in life. Good Luck on your journey and no matter what happens to my daughter I will always visit this site to check up on my new family!
Had appt with nerosurgeon today. He said my avm was a grade 4 and it is 3.5 to 4 cm but is deeper in my brain by my motor portion. He said surgery was out unless it started hemorrhaging. He said the danger was too great for left side paralysis. He said radiation is his first choice but they are doing the angiogram on Monday to get the real look at it and a team will then decide on what action to take. He said keep living my life exactly as I had (except for the anti-seizure meds and not driving for 6 months). He said the radiation could take up to three years so embolization is also an option. They want to do radiation first because they have discovered that if they do embolization first the radiation doesn’t always destroy it in that spot.
He spent over thirty minutes explaining, showing images, and drawing on my MRI. He said there is no reason to make rush decision.
I also felt better as I got into the elevator I asked a women what floor Nero was on. She asked what doctor I was seeing. When I told her she gushed how great he was. Her son has been battling brain cancer for 10 years. He is 15 now and still going strong as she attributed it to my neurosurgeon.
Hi Ksucat! Please know that it is very normal to have this fear and please keep reading up on some of the success stories which may bring you comfort knowing that this is now a very treatable condition thanks to the miracle of the advancements in our medical technology!!! What I've realized thru my AVM journey is that most of us come out of this with a "new normal" perspective on life. And from my experience, it's a much better place for me to be :)!
Stay strong and may you find Peace knowing that "this too shall pass"!
I had my AVM removed 3 months ago. Aside from having to take a lot of Keppra still and not being able to legally drive, I feel about as normal as I did before my surgery. I bike, I exercise, I go to work. You can barely even see my head scar anymore. And personally, I'm excited to see how much better it'll be when I finally don't have to take medication anymore.
The human body is an amazing recovery machine. Trust it.
Hey hey..I had a Grand Mal seizure in June 2011 and ym AVM was discovered. I had a surgery in october to cut it out. I struggled so long with that decision, coz even so it went all very very well- better than anyone would have thought - I felt lost for a long time and I couldnt accept how the things were after surgery. I had problems hearing and with processing what I saw, I was confused and weird a lot, I lost part of my vision firld on both eyes to the lower left, but most of all - it was the psychic side which caused me so much trouble....I was so desperated and i begged god for only 5 minutes to be like I have been before that all. I couldnt accept - I stressed myself so much about how I thought things had to be and things I should be able to do, see..know....such things. It took me long to realize - that only I define what is "normal" for myself - and to accept that things are different, but that doesnt mean that they have to be worse- they could be better too- And in fact a lot of things are so much better than before..i suffered from a generalized anxiety disorder since 1996, had a lot of ticks and torturing thoughts, was afraid of so much, and I was often angry and had a lot of prejudices...! that changed - im so much more satisfied than I ever have been, I enjoy my life and I am often filled with so much joy and happiness - coming from the inside. I laugh a lot and my life is so good now, even if its different from before. Sometimnes we just need to let go from things that hold us back in the past and start all over new....I still have bad days now of coure, but I have so much good ones - better than before...It is just - ur point of view changes....dont take it so bad- see it as a new chnace for a new life....wish u all the best..take care...all will be good XXX
In reading Dr. Bolte Taylor's book; "Stroke of Insight" hopefully you've received a copy? One of my favorite quotes; following her rupture is that she is "NOT, in her Right Mind" just love, love that remark, and learning to LOVE being NOT in my Right Mind!!!! Normal is So boring anyway!
No I haven’t read the book. To be honest i feel better than I have in a while. The anti seizure meds make me a little tired but no real headache in over a week. Maybe it’s a etter appreciation for the little things. Plus I always tell me husband and kids I love them every time I see them. The positive thing is I can blame my forgetting something on my newly discovered brain disorder instead of just age.