Any Success stories?

My wife recently had an embolization and gamma knife procedure. She is very worried that the AVM is going to reoccur and rebleed. Are there any success stories out there where people have been treated with these procedures and have gone through life with no problems???

Welcome Dave,

Being scared and worried is 100% natural for all of us here!

I'm sure your medical team has told you all the potential outcomes, and certainly a bleed is possible. Generally, if you are a betting person, your case probably has a 95% or better chance of NOT bleeding, so odds are in your favor. The fact that it's treated probably increases your odds.

Specially, my wife's AVM showed up about 1990. She was treated in 91, 92, 96, and 98. Last treatment which was microsurgery to remove what was left, she was declared AVM FREE.

She still takes anti-seizure meds, and has a slight limp due to nerve damage.

As for no problems: Well, she has ME, which is a big problem! She continued to teach half time as she lacked the strength to teach full time, but retired in 2007. Any of her new friends don't know what all she's been through. She lives life to the fullest every day. AVMs are a brush with death, so she especially doesn't want to miss out on anything.

She was told she'd most likely die from something other than an AVM, which is probably true in your case as well.

Best wishes, and get on with LIFE.

Ron, KS

David: January 8 will be two years since my first embolization. I had four all together and so far they feel I am ok. Go back in March but I am confident that all is fine. Do I have problems...well, I am alive so I am grateful I still get headaches and dealing with some minor problems they are looking into. Again we are all indiviual stories, remember that. Guarantees, no promises but please tell her she is alive and its so so norml to worry but with love, support and a positive attitude all will be well. I am grateful they caught mine and I am back to working. Am I the same, well, physically I get tired but emotionally I feel stronger. YOu are a wonderful husband to even come to this site for support so I am sure she is going to be great. Mental attitude is so important an she is blessed with your support. May your wife and all around her celebrate ll goodness in 2011! GOd bless. Mare

Hi Dave! Totally get the worried part. And honestly WE are the best thing to curb that. (Well not me, I'm a no-brainer! but SOOOO very many stories here are just what you are looking for.)

You want a success story- our awesome founder Ben is one for sure. He not only survived the stroke caused by his AVM, the gamma knife to kill it, some brain necrosis as a side effect, and the emotional turmoil this all causes...but he went on to create THIS site for all of us to connect. And now we have a network for over 20 rare diseases for other people to connect the same way. And he is thriving personally and professionally. He is about as much of a success story as they get. He's even decided to go back to Med school after all of this. Really, he is pretty remarkable. And is going through life with no problems :)

So yes, success stories are plentiful here! Easy to find, readily shared, and such a good way to reassure your wife. Plus, how lucky is she to have such an awesome husband???

Good luck to you both and know that this community of AVM survivors, in ALL our various stages of survival, is here to help you both cope and move forward with this AVM journey.

Shalon

I can’t speak for radiation, but on the embolization side I’ve had no recurrence after 7 years. Not that I’ve not fretted about it when I’ve had headaches, weird feelings in my body. But the docs always say it has not come back in any way.

Hi Dave,
Yes lots of success stories. You can search the members that have has success by going to members/advancedsearch http://www.avmsurvivors.org/profiles/members/advancedSearch select obliterated & Gamma-knife then click search.

This link may take you directly there http://www.avmsurvivors.org/profiles/members/search?name=&country=&location=&q20_start_month=0&q20_start_day=0&q20_start_year=&q20_end_month=0&q20_end_day=0&q20_end_year=&q31=Obliterated&q32_3=Gamma-Knife&q36_start_month=0&q36_start_day=0&q36_start_year=&q36_end_month=0&q36_end_day=0&q36_end_year=&q33=&q34=&q35=

Thank you Brett! This has been very helpful to us.

Brett D said:

Hi Dave,
Yes lots of success stories. You can search the members that have has success by going to members/advancedsearch http://www.avmsurvivors.org/profiles/members/advancedSearch select obliterated & Gamma-knife then click search.

This link may take you directly there http://www.avmsurvivors.org/profiles/members/search?name=&count...

You’re Welcome Dave. Hope your wife is doing better and found the information helpful. I’m 4 months post Gamma now and doing well. I have my first 6 month CT in March so my fingers are crossed too… Keep us updated

Hi Dave! I never had an embolization, just gamma knife. I went back to work immediately, and got on with life as usual. There was always anxiety and worry with every MRI, but that's completely normal. I never had a single problem for 13 yrs, and then had a grand mal seizure. So now I take meds for that, but still working and enjoying life!

I think that a positive attitude works wonders! And having such a supportive husband has got to help too!

My best wishes to you both!

Kristin