How do I decide?

I have a left temporal lobe AVM, Unruptured. It’s unknown if I have had seizures or not but I am on Lamotrigine and have been since my diagnosis 8 weeks ago (gosh it feels like a lot longer than that!)

I met with a neurosurgeon yesterday and he gave me three options. Option one is an option I will not even consider. I have a 19 month old son (and apparently was incredibly lucky to survive pregnancy) and I desperately want more children.

Sorry it’s blunt and to the point… But how the heck do I choose what to do???

  1. Do nothing. Can never have children. 3% chance every year that it will haemorrhage. Will very likely bleed within 30 years just don’t know when.

  2. Radiation. Don’t know risk of death, but 5% risk of stroke. Could take one treatment, could take lots. Risk of stroke 9 months after treatment also. Could be ‘cured’. Or radiation could just make it smaller or it could do nothing = still have an AVM and back to square one. Length of time/treatment 4-5 years and after that timeframe is when I would find out if it had worked or not. May or may not be able to have children decided by what/if medication is needed. Risks to me if not on meds, risks to unborn baby if on meds.

  3. Open brain surgery. 1-2% risk of death, 5-10% risk of stroke. They’d do another angiogram and check if surgery worked 3-6 months later. If it has been successful I’m free to get on with life. If not, more surgery therefore repeat the risk. Timeline of treatment is much smaller 1-2 years. May or may not be able to have more children decided by what/if medication is needed. Risk to me if no meds, risk to baby if I’m on meds.

I mean, how does anyone choose?!? I can’t quite see the positive percentages yet… I’m terrified of being disabled and terrified of leaving my precious family behind. It’s all terrifying!!

It is definitely hard to make a choice about how to treat an AVM. Please be sure to get a couple of opinions from AVM experts and ask what they think is best for your personal situation. Taking care of your health is the most important thing you can do for yourself and your family, so keep advocating for yourself and don’t give up until you feel confident and comfortable with your decision. Hugs!!

Sarah,

Exactly! Got to be the most difficult decision ever!

I took a couple of thought paths, though my review of life is from the point of view of having already made it to 50.

  1. Leave it till later. The risks of doing something seemed higher than leaving it alone. I should leave it alone until the cumulative risk of normal life is higher than the risk of the operation.

  2. Get on with it. OK, so the operational risk is higher than my life risk at this point, but I’m going to choose to do something later, so why delay? Why wait till the percentages swap round if I’ve already decided I need to do something at some point?

  3. I want to try the lowest risk procedure first.

The answer I arrived at was to act now. It has to be your decision, based on your own considerations. I did worry that by “acting now” I was choosing danger now rather than danger later (and why would you do that?) but my AVM started to give me symptoms that were starting to affect how I live my life. So I elected to get on the consultant’s waiting list and have the op whenever it was possible.

I did argue with myself that postponing the op, I would already be living a limited life, then I’d be facing the same operational risk. Life was already limited.

As I say, I’m 50. My view of life was that I’d had a good run. 50 years without worrying about your health is good, I reckon. To be in your 20s or 30s is a more difficult time to look upon life and feel satisfied with a condition like this at that point.

I agree, very difficult. Another thing I decided was “life has changed already. Don’t think it hasn’t. Don’t ignore it. Make a choice based on what you now know, not based on what you’d want it to be.” if that makes any sense.

Hope this helps a bit. Got to be your choice, informed by the doc, though, and the risks associated with your specific AVM.

What did I do? I was offered only embolization and that’s what I’ve had. Am I fixed and issue-free post op? No. Not yet, it seems.

Very best of luck, just in the choosing!

Richard

Hello Sarah,
Get a second opinion, I was told/ given the exact same options as you. I elected to take a calculated risk, I was 35. I have my two year post operation anniversary this coming Monday. I was advised by a surgeon that if I chose Craniotomy to ensure the surgeon carried out at least 15-20 operations on AVMs per year. The surgery I had was at UCLH in London, they are receiving hospital and can take cases from all over the country. I had 4 opinions in the end. I had seizures prior to diagnosis, but had a feeling that something was wrong for some time. I listed all of the pros and cons in long hand. This really helped.

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My thoughts were very similar to Richards. Three months ago I made the decision to start treatment in June. I personally can’t live wondering when this will burst.

It sounds like you’re in the UK?? How do I go about second opinions/choosing surgeon or place of treatment. I didn’t think I could do this??

Also (sounds stupid when I should be considering my health above all else!) but I hate confrontation. The nuerosurgeon that I’ve met is at the John Radcliffe Hospital in Oxford. I’d hate to look elsewhere, that be on my records and then go back to him?!? Is there any way I can find out about all the people specialist in either the surgery option or the gamma knife operation and go from there??

Sorry to sound daft!! thank you, Sarah x

Richard and Kelly,

Me too. I walked out of my consultation and immediately said to my husband “I can’t do nothing. That isn’t even an option”. I pretty much said it to the surgeon IN my first app. I just hate the idea of constantly walking around thinking ‘what if’… and it’s only been four days since I found out my options.

I have a 19mo and panicking about being on my own with him all the time :sweat: thanks for both of your replies xx

It’s not daft and don’t be sorry, I am happy to tell you all the people I saw and was recommended. You can absolutely do this, it’s not well advertised as it was but patient choice was a catch phrase in the NHS until just over a year ago. It is your choice, it is your life and your welfare and this has a ripple effect on those closest to you.

I saw Professor Christer Lindquist at Bupa Cromwell referred by consultant Mr Ramesh Nair

I was put forward to Mr French at Bristol, will dig out email about this.

To Mr Neil Kitchen at UCLH and then Ms Murphy at UCLH and their Gamma Knife Consultant and Senior Registrar- names I will find and send, I’m at work now…

… and how do you ask to be referred? Do you go back to your GP?

Absolutely not, I found all the Secretary’s names and contacted them direct. I was quite direct about it all, it was a lot of ringing and researching and emailing then I went to the Consultants secretary…

Hello, I also have an unrupted AVM on my left temporal lobe, diagnosed two months ago, it is small sized and superficially located so neuroseurgeons from my country (Romania, Europe) adviced me the surgery, but this decision is really hard, cannot be taken based on a single point of view. So I travelled to foreign countries in Europe and neuroseurgeons from there told me that it can be operated but it is dangerous, the left temporal lobe is a sensitive location responsible for logical thinking, speeking, visual and sensomotor functions, which can be easily damaged. A better option would be the endovascular embolization, maybe it will be done in several phases but is less invasive, offering a final solution. You should definetelly ask for second, third opinions because every case is different and must be treated on individual basis. Greetings!

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Dear Mrs. F:
Make sure you get more than 1 opinion. I was told by my neurologist/neurosurgeon that the treatment depends upon the size of the AVM, and its location. My size was less than 3 cm, and in a non-eloquent location. I have been told that the smaller the size, the greater the chance of bleeding. I am 66; and although I have not bled, I “presented” with fainting episodes, and zone outs (where I talk, but have no recollection that I talked, or the conversation). I was started on one anti-convulsant, and a 2nd was added. I underwent gamma knife surgery on Nov. 10, 2016, and so far, so good. I have had no more episodes. I opted for the least invasive surgery, given the choises. It also helped to have a very experienced neurosurgeon. Best of luck to you! God Bless,

I too have struggled with this decision. But for me surgery is not an option due to the location of my AVM. I would need at least 3 embolisations and then gamma knife to be in with a hope of being rid of my AVM. It has always felt like a lot to put myself through. Especially as there is less than 50% chance I would be ‘cured’. My AVM is generally un-symptomatic though and is stable. And as I have a young family too I have decided to take the ‘do nothing for now’ option. Others may think I’m mad. But I want to live a ‘normal’ life for as long as I can, as treatment for me holds a severe risk of deficit. I have known about my AVM since I was 14 and it hasn’t ruptured. I went on to have two beautiful children (albeit by C Section due to pressure of labour). Good luck to you. Its a really difficult decision but one that only you could make.