New member weighing options and risks

Hi all,

Sending my thanks for the wealth of information, experience and honest sharing here.

I was diagnosed with a left frontal AVM about 3 months ago after I fainted unexpectedly and hit my head (though my doctor says that was not related to the AVM). It has not bled and I have not had related symptoms (at least as far as I know). After visits with the neurosurgeon and radiologist, I understand that I am a candidate for either surgery or radiation, so fortunately have the option to choose whether and how to deal with it. On the other hand, I am going in circles with which route to choose…

I have been doing lots of reading here (thank you) and have a couple questions I’d love to hear insights on:

  • Though I’m sure every situation is different, I am getting the impression that recovery from either treatment option tends to be more complicated and harder for those that had a bleed beforehand. Does that seem right?
  • I’d be interested in hearing if folks have had longer-term challenges associated with the surgical option? The neurosurgeon told me I’d be out of work about 6 weeks but could start going back part-time after 3. Does that seem consistent with others’ experience? That somehow seems really fast and slow at the same time.
  • Other suggestions for how to weigh these options and risks?

Many thanks again,
Kristen

Hey Kristen,

In short, yes. A bleed can cause a fair bit of damage, so the recovery from a rupture can take much longer and some impairments can be lifelong in some cases

Neurosurgery is a funny thing, no 2 surgeries are exactly the same. Some medicos will give a ‘Best Case Scenario’ with everything going exactly to plan and with a nice big dollop of luck and good fortune, you could have a miraculous recovery and then yes, you could be back at work in 6weeks
BUT
Things don’t always go exactly to plan. We all hope/wish/pray that everything goes to that plan, but if you give yourself a 6wk timeline (as per the dr’s info) and then 6weeks on things haven’t improved it can be very demoralising, almost soul destroying for some.

When you say “…I am a candidate for either surgery or radiation…” do you know what type of surgery?
Some treatments can be minimally invasive, entering via an artery, sometimes in the arm or the groin.
Some can be very invasive, like a craniotomy, where they cut a hole in the skull. Obviously the recovery from the minimally invasive option is much quicker.

As for the radiology option, this is not something I have any experience with, hopefully another member who has will explain their experiences.

I’ve had a craniotomy and the recovery was long and slow. I’ve also required a few other neurosurgeries to try and settle symptoms. Some symptoms, which were intermittent, have set up residence and are pretty much constant.

My advice: DO NOT be giving yourself a time limit. Which ever option you choose your recovery takes as long as it takes.
DO NOT DO NOT be pushing your body’s limits. If your body tells you ‘Rest’. YOU REST!!!

I say this because I didn’t. I set myself a hard time limit and pushed myself hard to meet that limit. I pushed too hard, too soon, doing myself an even greater injury, requiring further neurosurgery.
Ahhh, Don’t Do That.

Merl from the Modsupport Team

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Hi Kri,

Sorry you’re having to go through this. I wouldn’t presume to medically advise you as I’m no doc. However, my brain has bled in 2000 twice, 2010 once, and 2019 once. I’ve had a craniotomy, appendix removed, gall bladder removed, gamma knife twice, and few other “minor” surgeries.

I’m 40. I started down this bumpy road with first brain bleed at 18. In my case, if I had it to do all over again I would get it all removed and as soon as possible. Because I didn’t, I bled in 2000, had gall bladder removed by emergency. Had appendix removed by emergency, had part of small intestine removed by emergency surgery. And also lost most of my vision driving home from grocery store one evening. I don’t say this to scare you so much as I say welcome to the next part of your journey! Glad you found us. Blessings as you continue!

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I had a bleed ay 48, left temporal AVM, it clotted so I didn’t need emergency craniotomy but I did not want to go through another bleed. I had two options, Gamma knife or craniotomy. My AVM was small but deep, on the inner side of the lobe. While they could get to it if needed, the risk was less to go with gamma. The hard part is the wait, mine was about two year until success, fortunately I didn’t have a second bleed, had it been on the outer portion of the lobe I would have had the craniotomy and had it gone! I loved my neurosurgeon, he said it like it was and his words were “I would have to mash through a fair bit of brain to get at it”. That contributed to my decision! He also told me that if it was him, he would go with gamma knife. Problem solved for me! Take Care, John.

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Hi @Kri firstly welcome to the family… sorry to hear about your recent experience but the fact you have these options is fantastic as silly as that may sound… I had my surgery 1 month after my bleed, which was 1 month after my diagnosis just before Christmas 2010… after my bleed I was in hospital for 2 weeks, yet after my surgery I was in hospital for only 4 days so it is strange but have seen on here it is quite common… Recovery did take about 6 weeks for me but it is a process as everyone is different as you can imagine.

You need to talk with your family and decide what is the best option for you personally moving forward laying out your pros and cons for each option… I found surgery was what they preferred in my situation as they get to it quicker and remove it right away eliminating any risks of bleeding but again everyone is different and your medical team would be best to help you make that decision.

Please continue to keep us posted on your journey and wishing you all the best… God bless!

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Thanks so much for your responses and for sharing your experiences. This is really helpful - both for information and emotionally to hear from others in similar situations. I appreciate your suggestions as I navigate this.

One of my frustrations has been that my neurologist - who told me that he would meet with the radiologist and neurosurgeon and that together they would put forward a recommendation - has not provided one yet. When I followed up with them and he returned my call, he asked what I was thinking I wanted to do, and seemed to have forgotten that he told me they would provide a recommendation. He did say they could still do that, so I am waiting for their follow up, but I have the impression that the lack of getting one might be in part because of the fact that either option is feasible (my AVM is superficial and in a location where there seems to be redundancy) and they want me to make the decision. In the meantime, I am working on getting my records to seek a second opinion and see if another doctor/team would have any other insights to offer.

Relatedly, does anyone have a recommendation for a neurologist and/or neurosurgeon at Johns Hopkins in Baltimore?

I also would be curious to know if you don’t mind my asking, @ModSupport, did the need for additional surgeries result from the initial surgery? and @randombeggar, were your additional complications/surgeries related to the untreated AVM or just coincidences?

Thank you again!

Hi Kri, for me the additional surgeries were from additional AVMs found. From the time my first one ruptured in 2000, technology has changed a whole lot! I think the treatment teams at the time @University of Alabama at Birmingham we’re good. However, the doctors and tools used at Duke University Medical in North Carolina were far superior. That was a 20 year time difference. I ultimately had four AVM, 2 ruptured, 1 caused a stroke, and one dissolved.

Hey Kri
Your frustration is understandable, the waiting is not good.
I’m in Australia and here neuro surgical decisions are often made via ‘A team approach’. So it’s not only the surgeon making the decisions, but a neurosurgeon (Sometimes multiple neurosurgeons), a radiologist, a neurologist, sometimes a physiologist all having a discussion and formulating a plan, by consensus. The good thing is that you have views of multiple Drs from multiple specializations, so a much more broad view of your specific case. But the bad thing is, as it sounds you are finding, trying to get those specialisation all together AND for all to agree. That can take time.

Now, this is all VERY debatable, the initial surgeon swears it is not, but other surgeons have queried why it wasn’t managed/dealt with in a differing manner. Some are of the opinion that they do a procedure hoping that it would resolve the issue and I must admit in some regards it did, but the result has triggered more issues, which has required neurosurgical intervention. By no means am I critical of the surgeon for performing the procedure. The way I look at it if he hadn’t operated, I’d be dead. But the ongoing ‘ongoings’ have been a bit of a nightmare. I also have to admit that my own actions of pushing myself ‘too hard, too soon’ has also probably contributed and I (metaphorically) kick myself every day for that.

I do need to say here that although my experiences have been a bit of a rollercoaster, for some people they can come out the other side relatively unaffected and as I said earlier ‘no 2 surgeries are exactly the same’ and nor are their recoveries but this is a time to be kind to yourself.

Merl from the Modsupport Team

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wow, I will be grateful to have just one then. Thanks very much - this is helpful. Hope that your recovery since then has been as smooth as it could be. Best wishes.

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Many thanks, Merl. Yes, I can see how the answer to many of these questions could be less than clear. I’m sorry about your ‘ongoings’ and thank you for sharing about them.

Indeed, what the doctor initially described was that sort of team approach that you explained, so that’s what I was expecting to take place. It makes sense that it could take time, particularly for a case that they evaluate as not urgent. I think the frustration was mostly that when the neurologist did follow up, he seemed to have forgotten that (?). Hopefully will hear more soon though.

Thanks again!

I always think a multidisciplinary review is best. Stops the neurosurgeon doing surgery when radiotherapy or endovascular treatment is best. And stops the interventional radiologist from doing the opposite.

Stay on their case, though. Make sure they keep you appropriately on their list of priorities.

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