Had three opinions

I saw my third nurologist last night. He also says that I should not do anything with my AVM. Because my AVM has not bled and is about 4 x 4cm and in a very eloquent area they all reckon that I should not treat it. I suffer debilitating migraines for about three weeks every six to eight months. As the nurologist said last night just go and get on with your life and try and forget about the AVM. Is that possible?

I would appreciate any comments.

Thanks, Sandra x

Hi Sandra, I had my AVM treated this January, went to shands hopsital in florida, Mine was inda small, the size of a gulf ball but was shunting alot, this showed on my MRI,so when I asked what should be done or leave it alone the doc said it would most likely bleed in the years tocome, before this I never bled, and still after radio surgery thank god ,no bleeding, but maybe a second opinion or third may be the way to go,its hard to forget that its there. I to had unbelieveable miraines for years , still get some good headaches, and he doc said I will most likely always have them. The radiation does not hurt, the halo they put on me was no fun, but after the radiation Ive had some har lose, tingles in the had ,some dull pains in the area of the AVM and eye twiches and even sometimes my right arm falls alseep, the doc said its all normal and will go away, ill be praying for you and the rite thing to do, keep me posted and add me to your friends k, Caroline

Hi Sandra
I agree with Stacey - it’s very easy for them to say “just forget about it” as they don’t actually have one. I think the problem is no one really knows whether treatment really improves the outcome for patients. The ARUBA study (i think you can find it quite easily on google) is trying to find that out - did your neuro mention this study to you?
Whilst the risk of bleed in one year is quite low - the accumulative risk over a life-time is quite high.
I was happy to have mine treated, but then the d**ned thing bled anyway!
Therefore cannot really offer any “words of wisdom”. Take care of yourself and try to research your options. I really don’t think you can just forget about the AVM, I certainly think and worry about mine every day.

All the best,

Soili x

Hi Sandra
Just noticed you’re in Berkshire - has your neurologist referred you to a neurosurgeon? If not I’d ask for a referral, perhaps to the National Hospital for neurology and neurosurgery in London so you get the best specialist advice.

Hi Soili

Yes I live in Maidenhead, I have seen my own local nurologist, Neil Kitchen from the National Hospital for Neurology and Neurosurgery in London and Andy Molyneux from Oxford/Bristol.

Sandra xx

Yes Sandra,

Go for another opinion…/… Go see a different neurosurgeon if you have the money or insurance to do that. There has got to be a reason why you are getting these bad headaches.

Hi Sandra
Neil Kitchen is my neurosurgeon too, I’ve also heard of Andy Molyneux.So they are none of them willing to do anything?

Hi Soili

I was at my neurologist yesterday and he had another letter from another neurosurgeon from Bristol and he agrees with the other three that it is safer to just leave alone at the moment rather than treat. I have had five children and they think it is stable. I am having another MRI next month and then another one after a further six months.

Sandra xx

Hi Sandra,
I had many second opinions ( i guess not really second opinions…different opinions is probably more appropriate!) I see 4 neurosurgeons in the brisbane area and 2 in Sydney. The first neurosurgeon agreed i had to get something done about the AVM otherwise i wouldnt live till i was 30. I too have never had a bleed (lets hope i never do…fingers crossed!) although they do at some time or another bleed…that is the nature of the beast. I wasn’t happy with the answer that i was not going to live till i was 30 so i decided to proceed down the road the first neurosurgeon sent me down - and that was surgery… anyway i was a week from surgery getting ready to shave my hair when they called the whole thing off as they had re assessed and said it was too much risk… and the likely hood of me having a bleed was slightly less. …anyway all the others after that agreed they would not do anything and i should try live my life as normal (yeah right!!) … as you say they do not know all the emotional things that go on - they get to leave work every day and carry on as normal. Well to try cut a long story short (as I can see this going on for ages!) …seek more opinions… SYDNEY is where i ended up finding professor Marcus Stoodley and Michael Morgan who refered me for stereotactic radiotherapy (look it up) they worked wonders with DR. Smee at the prince of wales hosp. you do need to do something about it… but make sure you weigh up ur options first… :slight_smile:

Just stay strong Sandra with your, bad self and handle those children with all of your care. And do not strain nor lift anything of any weight over your head and you should be fine.
Hey they are the ones that are treating us. We have to listen to them. Like my neurosurgeon told me not to worry about it and come get an MRI next year. Well I wonder why they want an xray next year. Ah well…

Hi Sandra, can’t belive they said ‘get on with your life’ no way now that you know it’s there can you ever forget it! As for treatment maybe the risks outweigh the procedures and if they all saying the same thing then thats right. are the a leats going to monitor you regulary, to see if thing change in the furture?

Hi Sandra, looks like I am in a similar boat as you. AVM that has not bled. <3cm located in occipital lobe. Anyone know how to get early reports from the ARUBA study? My neuro dr. is leaning towards radiosurgery, however that is from only seeing the MRI. Next step is angiogram.

My avm is located in my left temporal lobe and was almost 5 cm. I had two embolizations and gamma knife. Its hard to just live your life with this thing in your head. I hope there is something they can do for you. I know my life hasn’t been the same since December 13th 2006 when I found out. Best of luck to you!

Well Sandrax,

Yes just do not make it bleed. Cause my AVM had bled twice in my lifetime and it wasn’t a pleasent feeling. I mean I had two little mini strokes. They are not fun. But now am doing ok. I had been shot with the gamma knife once and been laid on the table twice for radiation to the brain for my AVM.
Well I am still here? And that I guess is good.


Troy Garcia

I don’t know where you went, but that is also a consideration. You want to go to an Medical Center that has experience with AVMs (neurosurgery). I would not rely on regional hospitals for example. Go to a prestigous medical university where research is done if you can.
Check your spelling on Neurologist :slight_smile:

Good Luck!!

i had an extreamly large avm with several anurysms that was on the verge of rupture according to all the surgeons i saw but noone would do nothing it was deemed to risky and i was just sent home to die…but i never gave hope i keept searching and after 10 opinions on my 11th opinion i finally found a surgeon who completed the risky surgery…all i can say is that if your not happy with the answer you have been given dont sit back and accept it…go out there and get more opinions …i ened up travelling australia before i found a surgeon competent enough to do my surgey…dont give up …you will find the answer you are looking for …thinking of you and sending you lots of positive energy to help you through this journey xxx

hmm. I find it interesting that they said to leave it alone. My Neuro’s said operating was too risky but they chose to treat it with embolizations and stereotactic radiation. I now wait 3 years to see if it has worked. I think getting more opinions is a good idea and best wishes to you.

Yes it is Sandra, if it hasn’t bled. But my AVM had bled twice in my lifetime and I have been thru radiation to my head three times. I am from New Orleans, LA and I am still here. My neurosurgeons tell me that I can not have radiation again unless it bleeds again. Then they will give me my options.

My AVM is a ping pong ball in the middle of my brain underneath my brain.

Na Caroline I have been thru three radiation treatments in my 41 years of being on this earth.

Caroline Frances said:

I don’t know where you went, but that is also a consideration. You want to go to an Medical Center that has experience with AVMs (neurosurgery). I would not rely on regional hospitals for example. Go to a prestigous medical university where research is done if you can.
Check your spelling on Neurologist :slight_smile:

Good Luck!!