Anyone have a reoccurance of an AVM. I had radiation for an AVM four years ago. Was informed it was eradicated. Just had an MRI and have now been informed I have a new AVM.
My daughter has AVM and I have researched alot into this matter. It is a confusing world, but I have heard that some AVM show up better when one has been closed. I have also heard that AVM can occur independently through recruitment.
The most important thing is to tackle this new one now. With improvement in technology, it is getting easier to address.
Thanks. The new AVM showed up in an MRI which was done to check progress on a pituitary tumor. I will follow up with my Neurologist who will probably order an MRI on the area where the old AVM was diagnosed.
Good luck. I hate this thing more than taxes.
Hi Julia:
After my second embolization I was told my AVm was removed. Continued having headaches and noise. Another angeo showed I still had the thing. The doctor then told me the AVM was “malignant” which scared the poop out of me. He went on saying malignant meant it was an ongoing thing I would have until I relocate to that mansion in the sky, or as the miltary refers to the “big permanent change of station or The big PCS.”
Some people do luck out and are actually free of them. I will certainly pray that you can become one of them.
Dewey
My husband too had a recurrence of an AVM after multiple embos and a craniotomy. I totally lost it. I think after being through so much and finally feeling like it was all behind us. I think because you finally feel able to let your guard down and move on it really blows you out if the water. This one was fortunately able to be embolized and his three month angio showed all clear and we don’t have to go back fir a year now. I think because these are such sneaky little devils you never feel able to totally let your guard down. It has taken two years for me to finally get to a place where I feel like what is going to be will be and we will deal with it as it comes. For all the terrible things that have happened I have learned patience and the ability to realize that I have little control over things. A major undertaking for such a control freak. My experience is so different as it is not me who has to live through all he has and he has done so in such a graceful manner. I truly admire each and every one if you as I read your stories. I can not imagine knowing that there is still a little of that monster left behind. God bless you Dewey and I hope that all will be well
Dewey M Reynolds said:
Hi Julia: After my second embolization I was told my AVm was removed. Continued having headaches and noise. Another angeo showed I still had the thing. The doctor then told me the AVM was “malignant” which scared the poop out of me. He went on saying malignant meant it was an ongoing thing I would have until I relocate to that mansion in the sky, or as the miltary refers to the “big permanent change of station or The big PCS.”Some people do luck out and are actually free of them. I will certainly pray that you can become one of them.
Dewey
My daughter had a bleed two years ago and the AVM was removed by craniotomy. An angio was done at the time to confirm the removal. Two days ago a repeat angio showed a regrowth. I have been told this is only possible in children, but I’ve seen several postings here about regrowths or possibly additional AVMs being located after the removal or treatment of the one first identified. Dani’s is most certainly a regrowth as it is at the top edge of the area removed during the craniotomy.
My AVM was gone by way of craniotomy at the age of 5. It had returned by the age of 14 and caused another stroke. I went through several embolizations and radiosurgery (gammaknife), and the docs said I was cured. 10 years after the gammaknife, I had a third stroke, which was a a tumor pressing against my skull. The docs say that it was a side effect of the gammaknife. Knowing what I know now - I would insist on MRIs or CT scans every few years.
laurie Bauer said:
My husband too had a recurrence of an AVM after multiple embos and a craniotomy. I totally lost it. I think after being through so much and finally feeling like it was all behind us. I think because you finally feel able to let your guard down and move on it really blows you out if the water. This one was fortunately able to be embolized and his three month angio showed all clear and we don’t have to go back fir a year now. I think because these are such sneaky little devils you never feel able to totally let your guard down. It has taken two years for me to finally get to a place where I feel like what is going to be will be and we will deal with it as it comes. For all the terrible things that have happened I have learned patience and the ability to realize that I have little control over things. A major undertaking for such a control freak. My experience is so different as it is not me who has to live through all he has and he has done so in such a graceful manner. I truly admire each and every one if you as I read your stories. I can not imagine knowing that there is still a little of that monster left behind. God bless you Dewey and I hope that all will be well
Dewey M Reynolds said:Hi Julia: After my second embolization I was told my AVm was removed. Continued having headaches and noise. Another angeo showed I still had the thing. The doctor then told me the AVM was “malignant” which scared the poop out of me. He went on saying malignant meant it was an ongoing thing I would have until I relocate to that mansion in the sky, or as the miltary refers to the “big permanent change of station or The big PCS.”
Some people do luck out and are actually free of them. I will certainly pray that you can become one of them.
Dewey
Thank you. I am awaiting a call back from my Neurosurgeon. Hopefully, this one can be taken care of more easily than the last one and my family and I can just move on with our lives.
Dewey M Reynolds said:
Hi Julia:
After my second embolization I was told my AVm was removed. Continued having headaches and noise. Another angeo showed I still had the thing. The doctor then told me the AVM was “malignant” which scared the poop out of me. He went on saying malignant meant it was an ongoing thing I would have until I relocate to that mansion in the sky, or as the miltary refers to the “big permanent change of station or The big PCS.”
Some people do luck out and are actually free of them. I will certainly pray that you can become one of them.
Dewey
Julia,
My spinal cord AVM was obliterated in 2006 by embo. Six months later an angio showed it was still all obliterated. However, my latest angio done on 9/20/2010 showed the AVM has grown back.
Good luck with yours.
Tori
Hi Julie, My daughter had a bleed in 2002, embo the same year, 1st gamma Knife 6 months later, then 5 years after that …she had an angiogram right before her 2nd gamma knife and found that the original avm scarred but that another area formed. (The dr said the avm was twice the size of the original one…I just about passed out when I heard that!) She had a 3rd radiosurgery which they used the Linear Accelerator and now is trying to keep seizures at bay with meds. So …long story short…Yes…reoccurance is definately a possibility especially in children as she is only 14. Hang in there and we just need to fight each challenge one step at a time. Good luck to you!
Sorry to hear about your “new” AVM. My treatment involved the use of Black onyx glue and I was told it was gone as well. Three years later the headaches began again, and after an MRI, I had to have oblation surgery, but need still need another type of treatment. I hope they’re able to more successfully treat this one for you. It was less stressful for me the second time, I was still concerned, worried and nervous, but I was much less afraid. Keep us informed and let us know what they’re going to do.
DAMN!!!
I never heard of AVMs growing back until I landed here. (Just the past coupla days).
I had one that popped in 1988 (that was the first I knew of its existence). The surgeon said he got it all (?), but seizures started about 6 weeks after I was discharged from the hospital. Eventually, I had an angiogram which showed... ugh... an AVM.
I asked the neurologist who ordered the angiogram, "Did the first doc not get it all, or did it grow back?" He paused for a moment and said "Yes." I had always written that off as "professional courtesy," you know, like why sharks won't eat lawyers ;-)
Well, the seizures continued, even with meds. Then in 1992 the seizures just never came back. In '02 I had to stop taking them (Tegretol) 'cause I had no insurance & couldn't afford it.
Everything was just great... no symptoms, no seizures... nuthin' until...
'06 the seizures just came back... tonic-clonic/grand mal every few weeks. They've been with me ever since.
I had always attributed this to (simply) having craniotomies.
Now, I'm seeing that these little suckers can and sometimes do come back.
From what I'm reading, it seems the only absolute way to confirm an AVM is through an angiogram. Would youse say that's correct?
We don't have any insurance (again) and I have not been able to acquire a neurologist to aggressively find out what's going on to cause these seizures.
You can imagine where my thoughts go when I see that AVMs can come back.
My AVM "popped" when I was 22, I was 24 for the second surgery and am 44 now.
Whaddya think I'm looking at here, guys?
What's this?
A thorough literature survey disclosed only 12 documented recurrent cases (9 were documented in English and 3 in Japanese), which shows the rarity of the recurrence of cerebral AVMs, although the actual rate of recurrence is not known because of the lack of routine long-term follow-up. (from http://www.springerlink.com/content/q6y9grutqrv1bhe6/)
Thanks for the input, Rebecca!!!
I would really, really be interested in hearing how things go with you (though by now you can imagine my reasons are not wholly altruistic ;-)
No, really, I'm wanting to know how things work out for you too! :-)
Rebecca Lamb said:
I'm not sure if an AVM can reoccur or not, but I do know in November 2009 when I had my 3 month angio follow up after embolization, my doctor said he had gotten 99% of my avm (only one small draining vein remained), by November 2010 my next angio showed 10% remaining.......did it reoccur or grow or did they simply not see it all a year ago, not really sure. Either way it was back, mind you immediately after my embo the doctor was certain he had completely obliterated it. So we jumped from obliterated to only 1% left to 10% remaining in just over a year. In the end all any of us can do is address it as it comes! Good luck and god bless!
After my first embolization the doctor said he had taken care of all of it. One year later after another angeogram, it was determinded to still be growing. I then had another embolization at one year.
After another year I had to return for another embolization. This one did not take care of it, so I was then scheduled for the gamma knife last July.
I was told two times that the AVM no longer existed. I go in for the six month follow up MRI next month. (Jan. 14) Headaches and bruit are still there.
I am convinced that they can return in the majority of cases.
Rebecca,
I was in no condition whatsoever to ask questions about AVMs when mine went *pop*. I didn't really realize at the time how much I was placing myself into the hands of God (Hindsight is 20/20, isn't it?).
As I worked toward a second surgery I was a 24 y.o. punk and didn't know what questions to ask. Looking back, I did not (apparently) understand the significance of what I was dealing with.
Now that I have been "officially" declared "disabled" and know some better questions to ask, perhaps I will be able to find a doc who can get some answers for me.
In the meantime, its a blessing to be able to be a part of this little group! Thanks Rebecca and everyone!!!
Rebecca Lamb said:
Dean, I believe you may be correct. I do think though it is important for the neurosurgeons and neuroradiologists to explicitly explain this to patients before they choose a treatment option or to treat at all. No one ever told me there was a possibility of reoccurence or of growth, would i have chose to do something different had I known, not sure. However, it would have been nice to make my decision completely informed, but it is what it is. With that said, whenever I experience symptoms that concern me in the future, I will have them looked at and I will not go through the rest of my life under the assumption that my condition is one that is treated then over with, but I will live it every moment with a clean bill of health that I can.......we all should!
Dewey M Reynolds said:After my first embolization the doctor said he had taken care of all of it. One year later after another angeogram, it was determinded to still be growing. I then had another embolization at one year.
After another year I had to return for another embolization. This one did not take care of it, so I was then scheduled for the gamma knife last July.
I was told two times that the AVM no longer existed. I go in for the six month follow up MRI next month. (Jan. 14) Headaches and bruit are still there.
I am convinced that they can return in the majority of cases.
The reoccurance issue is very scary for all of us dealing with an AVM. My daughter was fine on this day two years ago. Then January 13th, 2009, she had a headache and quickly collapsed. We found out that she had a massive brain bleed, due to a ruptured AVM.
Earlier this year, we found out she had another AVM. Our neurologist said she thought the original one had regrown. A neurosurgeon said he thought the original one had simply not been completely removed. Now they're all disagreeing about plan of treatment, follow-up and risk of regrowth, etc.
What I do know is that it's a miracle my daughter survived the first one (when she was 6). I don't want her to have to fight for her life again, so I will do whatever is necessary to watch this for regrowth.
http://www.surgicalneurology-online.com/article/S0090-3019%2803%2900846-2/abstract
This is the link that I discovered when it looked as if my son had a recurrence. (He did). We were told that the surgery was a "cure". We were also told that emboliations are not premament, and that Gamma Knife treatment can miss, so surgery is the only way to ensure that the AVM is gone. The surgeon forgot to mention that the things can grow back! When we were talking after the angio came back positive, then it came out that, yes, AVM can grow back, no one understands why, or when. Some docs seem to think that it is because of parts left behind, others that they are new growth.
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