Hi Guys i was wanting to ask my fellow AVMers who had surgery for removal a few quick questions...
1. How long did you consult your neuro before being told you can go and live your life AVM free?
2. What was the final test (CT, MRI, Angio) that was done to confirm no regrowth and that you were ok?
3. I read i may be at risk with having a MRI due to my clips and the magnets...is this true the clips may be affected by the magnetics on the MRI, which im worried may come loose and cause a future bleed?...when surgery was done in 2011 i was of the assumption the clips would be able to withstand this type of issue in this day and age. I had a MRI 1 year after surgery and due to the clips it caused a black mark to obstruct the image so i waited and did a CT on the 2nd year check, at neuro's request
I had a bleed on the right side of my brain due to an AVM in Jan 2011 and underwent surgery Feb 2011...was told it was completly removed and the last check early 2013 (CT w/ contrast) revealed the AVM was still not there and no regrowth.
Been getting some more frequent headaches as of late and was worried so saw my Neuro last week. She advised i wouldnt need an Angiogram as she was confident anything related to an AVM was not an issue, yet she stated 3-4 yrs after surgery i would require an angio in my last consultations, which means now or next year i should have an angio...she said she is only doing the MRI so i can have piece of mind after i gave her a run down on my latest symptoms etc
Im 34 next month and was 30/31 when my surgery was done so i hear children are more subject to regrowth as adults are not.....
Ive been really scared and worried about this as i have my first baby on the way as some here may already know...i need to make sure i am in good health for my family...I just want an idea on how long until my neuro shakes my hand and says now go live your life and i dont have to go back...is 3 years going onto 4 standard for removed AVM patients to consult neuro etc...God bless and thanks for the help guys.
1) about 6 weeks after leaving hospital
3) No aneurysm clip issue with MRI done 2.5 years after surgery
Had last visit with neuro about 2.5 years after op (2012) and he isn't expecting to see me again until 2017. There was no evidence of an AVM in 2012.
God bless you mate i pray that you keep the good health up Tony....why do you need to go back in 2017? Thats what im trying to understand myself...i want the neuro to say see you later and not request any further check ups or consultations ever again regarding AVMs
I'm guessing its just a precautionary thing, going back later. I'm not fazed by the request. I always have good conversations with Prof Morgan, and he always asks how other AVMers are doing, cos he knows of our meetups etc. I'm at a stage in life where I realise that we must make do with what we have. Cheers to you and your loved ones. Tone
Congrats on your pregnancy! Exciting news for sure. I was given the all clear from my surgeon about 6 months after my crani. I've also had several MRIs/CTs over the years with no problem with clips or screws or anything metal. I was told he used titanium. I don't set off metal detectors either ;). I did start having wonky symptoms about a year ago. My neurologist ordered an MRI (with contrast) and it showed all clear. I'm almost 6 years out. My neurologist also relased me a few months after so... Regrowth is only possible if any of the AVM was missed during the resection. If you've had subsequent MRIs and they show no residule than you are probably in the clear. I understand your fears. Once you've had an AVM and a bleed it's hard not to worry every time you have a headache. If the MRI will give you peace of mind, by all means have it.
I guess thats a fair call...its good to see they are interested in AVMers it will only help the research and treatments better...God bless
Thanks for the reply Trish i agree that the MRI is worth a shot for piece of mind...God bless
I only had surgery two weeks ago on April 22nd but my doctors confirmed as soon as it was over that my AVM was obliterated and there is no need for follow up tests (they performed my surgery in a special Cath-Lab room where they could do continuos Angiogram pre- and post-surgery to determine it was all gone)
From what I have heard about clips is, they help treat the AVM and may deter bleeding but they are not a definitive cure. If your AVM is truly obliterated, I do not understand the need to continue to see your doctors. As you mentioned, young kids may need to follow up with scans and angiograms due to their developing brains and potential reoccurance of AVM but not true for adults. I hope this was helpful. Congratulations on your pregnancy!
Thanks for your reply Yummytown and im glad to hear your doing well and may the battle to good health be strong a quick.
I have never heard of any AVMer being told they did not require further check ups or monitoring even after the AVM had been removed. Im not sure if its the neuro or the standard way they do things in Australia maybe? As far as the clip is concerned from what i understand they removed the AVM and as it was feeding into other areas of the brain they would need to clip the feeders where the AVM was once connected...thats what i understand anyway. Note that i had crani so they opened me up and removed the AVM and advised post surgery it had been removed in full.
God bless and keep us posted on your progress
I had AVM bleed and crani in April 1959. Yes, I am old, and isn’t that great? I still see a neuro every couple of years, mostly because I still take seizure meds. I can’t remember back then what a neuro guy said after the AVM. I really only thought I had hit my head while ice skating and had a blood clot. That is what I was told. Also, I was told I lost some vision, but it would come back. NOT! I do not ever get MRIs because there are 5 vascular clips in my brain and no one knows if they are magnetic. I do get CT with contrast and EEG. CT shows nothing new, EEG shows seizures still occurring. My AVM bleed was also on the right side in the occipital lobe. I used to get headaches a lot, but not much anymore. I don’t know if I ever had an angio, but don’t want one. There were enough scary and barbaric tests to see in your head back then to last me forever. I had a baby boy in 1980 and had no problems, but that was a long time after the crani. You are pregnant now, and most likely part of your angst is because we all get scared when a baby is coming. As far as regrowth of AVM, I only know I was most likely the only member of my very large family to have an AVM. I know there are a lot of questions about heredity, birth anomaly, etc. Unless you have HHT or maybe Chiari, the chance for re growth is small. I always think if it re grows, it was not totally removed in the first place. and if you think about it, an anomaly, I believe, means a chance occurrence. Not sure of that. You will be fine.
Yay for you, Beansy for this comment. You are an inspiration!