How to best prepare emotionally and physically for an AVM Surgery?

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Hey just recently joined for some advice, My partner has an AVM on her brain she’s been told it is a fairly large and difficult surgery, whereas one case one Dr has advised against it while another has said would do it.

She has opted to go for it and it is now scheduled to be removed in the coming months. I guess Id like to know how I can be the most encouraging in the months/weeks leading up to the surgery?

Not knowing what the long term outcome may be a bit of a scary thought. I may be a little naive but is there anything that could best prepare her from now to give her every chance of living the best quality of life after the surgery?

At the present she’s been advised not to undertake any strenuous activities to not raise her blood pressure, however, I have also thought none strenuous strengthening exercises may assist in areas of the body where the surgeon suggested may be weakened due to the severity of the AVM.

I’m still educating myself on the surgery and its process but I guess any advice would be grateful :grinning:

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Welcome to our community. It’s great you are here with us given the circumstances. You ask a tough question, and while all our situations are very different we share similarities. I had a brain bleed in May 2016, and ended up in the hospital. It had stopped bleeding and recovery went fairly well, albeit slow. I was presented with two options, craniotomy and gamma knife. I had a second angio in August of 2016 and then a follow up with the surgeon who had done. case consult and the recommendation was gamma knife. A long lead up to what I had decided. If gamma knife I was going to start my graduated return to work and continue to stay as healthy as possible, exercise, healthy diet etc. If we had of decided craniotomy, I was not going to return to work and was going to get myself in the best physical condition possible. That is within the limitations imposed by neuro. By this time I was permitted to jog and do light weights, which was a progression from walk only when released from hospital. My thinking was the better shape I was in, the better potential outcome. In addition to body, this would have had my mind in a better place. This was my personal plan, but put me in a gpd mind set to be prepared. Take Care, and again welcome, John.

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In my book having done your research and knowing our medical lingo is supportive enough. Perhaps buy her a hospital blanket?? I remember that is what I mostly hated after my embolization+ craniotomy…how cold the hospital was and despited the heated hospital sheets I would freeze. At the end every one I knew (family or friends) gifted me blankets and I still have them all to this day :slight_smile: it’s one scary surgery so she’s going to need your support and love before during and after. Ughh and all the physical therapy (funfunfun) right after.

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Hey cmac,
I’d like to say ‘Hat’s Off’ to you for educating yourself, but then you’d see all the holes in my head :smile:
So instead I’ll just say good on you. The more info you have the more aware you will be.

Neurosurgery and it’s outcome can be very individual and as you have found differing dr’s have differing opinions, which only confuses the whole subject. I can assure you, this is not unusual. At one point I was told it was a ‘Watch and wait’ situation, but the idea I had this ‘timebomb’ in my head and I was just to wait was a psychological torment of mammoth proportions, so I got a 2nd opinion.

“I guess Id like to know how I can be the most encouraging in the months/weeks leading up to the surgery?”
I think everybody deals with it in their own individual way. Some people need time to process it all, to think about the whole process. Some people need to talk about it all. Some people can become so focused on it all, it can damn near drive them (and everybody around them) crazy. But then some people can be quite at ease with it all. Some people can be on a see-saw of emotions from full acceptance to complete rejection, up, down, up down…
Personally, I’ve required a few neurosurgeries and at some point, I’ve done all of these (I’m sure my wife would agree, especially the driving her crazy bit :smile:). The reality is the dr’s are in control, we, the patients have no control and ‘if’ we can be at peace with that, all the better.

BUT none of them are the ‘right way’ or the ‘wrong way’ to deal with it all. These processes and thoughts don’t happen at a set time of the day and all you can do is be there to support her when she needs. This whole journey can be one hell of a rollercoaster for ALL involved and not just her as a patient, but you too. Don’t forget about yourself. If you don’t remember to look after yourself, you WILL burn yourself out and be of no use to anybody.

Some people can come through the neurosurgery fairly well, some people can have minor issues. But then some can have more major effects. There is no set measure and every patient is different. I’m 7yrs on from my last operations and I still have symptoms/side effects today and yet I have a niece who has also had neurosurgeries and apart from the occasional bad headache, is relatively fine.

One point I’d like to make in regard to ‘strengthening exercises’. If we were talking about a muscular injury a building up of muscle could be appropriate, but we’re talking about the brain. The brain uses electrical signals, when those signals or the strength of those signals is altered this can have the effect of ‘weakening’, but this is not something that exercise can prevent. If she has been advised not to undertake any strenuous activities. DON"T. One of the best things you can do for her is reduce her stress. You cannot manage her psychology, her thinking, that’s up to her. But if you can reduce her other stresses, just by being there for her, this can help.

Best of luck with it all and please do let us know how things go.
We’re here to help if we can

Merl from the Moderator Support Team.

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clink clink - that’s me throwing my two cents into the ring…

Quick scenario to help “explain” my thoughts. I’m going on 42 YEARS that I’ve been battling this thing. It goes up and down but it’s been there. For the record, I was diagnosed when 13 so you do the math.

2018 was the big one. Surgery, coils, embolizations, brain injuries, we are almost three years post and I’m still not back at work. Actually, I don’t expect to go back to work full time, not even part-time. If people ask me what I do, my answer is “freelance author” because I like to write even though I don’t actually make any money on it - not yet.

Looking back at the last 5 years (2 years before and 3 years since) - what advice would I have given my wife so that she could have supported me even better? (Not criticizing her, just saying, what could we have done better?)

A couple of thoughts:

  1. Make sure she knows it’s okay to not be okay. She’s going to have bad days afterward - no matter how good or bad things went. It’s okay. It’s okay to say, “I’m not going to talk today because if I do, I’ll be really grumpy.” Make sure that she knows that it’s okay.
  2. Don’t take anything that she says afterward too seriously - at least not at first - I couldn’t tell you the # of times I’ve said things to my wife and then later said, “You know, when I said ________, that isn’t what I meant. Let me try it again.” “Does that make sense?”
  3. There’s a caveat to that - if she talks about wanting to hurt herself or hurt others, take it seriously the first time you see it. I have two kids who had a troubled past before they became part of our family and at one or more times threatened suicide. They never truly attempted it but we always took it seriously. I’ve been dealing with some substantial medical side effects from my last brain surgery from my AVM (Jan. 2018) that has put me on Social Security Disability with no signs of that letting up. I have an agreement with my wife and my daughter (Nurse practitioner) and my doctors that if I ever feel that I am getting close to the standpoint of causing self harm, I will scream, holler, yell, push, shove etc. to get my voice heard so that people know I’m hurting that bad.
  4. Make sure she knows that you won’t be upset if she isn’t “the same” as she was before hand. My wife and I had to work on that one a lot - not because she was expecting me to be the same as I was before but because I felt that she was expecting me to be able to do things the same way and the truth is that she really wasn’t, I was.
  5. In terms of physical fitness, a couple of thoughts. 1) I have personal “proof” that extensive exertion (aka job routinely lifting 30 lbs or more multiple times a day), is not good. On previous trips to Mayo, the doctors said that they couldn’t prove it at that point, but signs pointed to efforts that raise your blood pressure for a substantial length of time aren’t good. 2) My cardiologist told me recently that rather than targeting any particular distance or any particular time, he would recommend doing what FitBit shows. The heart rate tracker on my FitBit tracks the numbers and also calculations them in 3 different categories: Peak, Cardio and Fat Burn. His recommendation is to do “something” that would get me in the “fat burn” range for 30 minutes 5 days a week. For someone who is 6’2" and mid 200’s, it says that the range is between 85 and 130 beats per minute

Well, that’s about all I’ve got for now, but I’ve been here for 42 years and I hope to get another 20 to 30 more trips around the sun yet, the good Lord willing. If I can answer questions or raise other questions, please don’t hesitate to let me know.

TJ

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Hello,
I’ve had a similar experience. I opted in for gamma knife radio surgery in 2018. 2 rounds of focused radiation towards the left thalamus region of my brain. Gamma Knife works like a knife but with lasers. My second round was a lot worse than the first. Which I expected. I had a lot of swelling and surrounding edema around my AVM. Winded me up in the hospital in 2019. I stayed for 10 days so they could safely get me off of dexamethazone. I was prescribed 4 different medications but am now only taking them if I need to. Present day, I still don’t recall certain things but I know that what I’ve been through, I wouldn’t wish on my worst enemy. I had a bad thing happen to me but I choose to fight it anyway. My partner has been there for me. Through all of the ups and downs. I’ve cried, laughed, and had to relearn how to walk even. Be strong for your partner. She will need you.

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@cmac

Welcome! It’s fantastic that you’re here and you’re doing a marvellous thing by working through part of the equation. Lots of what the guys have already said is good. My thoughts…

  1. I’m with Merl. You absolutely need to remember to look after yourself. So in all of the hanging round hospital, doing long days, late nights and all that, you need to go steady on that sort of thing and remember to rest, eat and give yourself a decent amount of space because it is going to be just as hard for you as her in its own way. Seriously.

  2. It sounds like it’s going to be a challenging operation if one doc wouldn’t go there, so there’s clearly a risk of deficits. What different people can tell you here is that everyone is different, so almost anything can happen. Excellent recovery Vs very poor outcome. Very quick recovery Vs very slow recovery. It’s impossible to know. However, if she wakes up with some deficits, don’t either of you go round thinking “well, that’s that then” because it is not. Some things are driven by swelling and the invasion of the op and will resolve quickly. Some things may go on a lot longer.

  3. Recovery from messing about with your brain takes a long time. I had an embolization of my brain DAVF so a tiny cut in the groin and a few ml of glue injected in the right place up top. Sounds as easy as peeing in the wind compared with some things. I was in hospital about 3 days, off work for three weeks but felt workable after a fortnight. However, proper recovery took MONTHS, not days or weeks. So when it comes to being patient about recovery, we REALLY mean patient.

So… we’re here for you. It’ll be great if she has a straightforward time in hospital: that will be great: but if it’s not so straightforward, that’s when you’re going to need some resilience to call on. We are here. Each of us have different experiences of this kind of thing but we’ve all got through it (some of us several times, as Merl and TJ say) so I hope we can help along the way.

Any worries at any stage, that’s what we are here for. We’re with you. Just talk. Let us know how we can help.

Very best wishes,

Richard

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I’m noting many challenges ahead for both but very confident we’ll both get through everything!

She will need to do two if the embolizations and once surgery is completed, they’re recommending another two weeks incase of a stroke. I guess once all thats done its just a matter journeying along the road of recovery.

Thanks for the Support Richard!

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Wow!
There is a lot to take in there! My partner will need to stick around hospital for about 10 days after the surgery, possibly for a similar reason.
Sorry if im getting personal here… but what did you stop recalling?
Honestly, really good to hear you’ve reduced the amount of medicine you’re taking. Kudos to your partner also… what a great person!

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Thank you very much for this!

Does not sound like an easy road… I really appreciate these points, there is definitely things in there I did not think about!

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Yeah! Definitely. I forget certain specifics. When people bring up the past, I don’t worry much about it. What’s done has been done! I try and remind myself of that.

Lillian (Lilly) Eickhoff

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It’s the best thing to be positive and if some challenges get thrown at you, work through those as they occur. No point worrying too much about things that are still ok today.

I’ve read here of people waking up from surgery unable to see or unable to speak. If that had happened to me, I’d have been frightened stupid. However, the couple of stories I’ve read here were very much temporary issues – a couple of days maybe, as there was some swelling post op – so if either of you are worried about deficits, encourage her that these things can be very temporary. I’d have wanted someone to tell me that.

So, is she having embolization(s) prior to a craniotomy? It’s a fairly normal combination.

Richard

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I don’t have a lot to add on how to get ready for any type of brain surgery or procedure

When I hemorrhaged, there was no choice - we go in, or I die - quite quickly, yet very painfully

I shot out the other end better than I have felt in a long time

Most I can say is, be very informed of what is going on with anything related to the surgery of your partner + pray & hope for the best. . . I only got to do the 2nd - it worked, I’m still fine

I truly wish you & everyone going through this the best!

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@cmac One thing I really appreciate my Husband doing is being the gate keeper. I have a huge Italian and Spanish family and he does a great job of keeping everyone informed for me so I can recover. The stuff/dye that they use for the angio/embolism I am allergic to so I feel pretty bad for 3 weeks to a month . I drink a lot of eletrolytes to flush my system.
Ahead of time we try to get all the snacks, soup etc that I will want for recovery and make the bedroom as comfortable as possible prior to going into the hospital. Download some movies for her to be able to watch just in case they dont anything to watch in the hospital and pack her favorite crackers and drinks for the hospital and tea. Stanford only gives half a can of ginger ale for some reason and has terrible crackers. Pack lip balm , lotion and hair brush. If COVID is still happening you may not be able to visit sadly. Last time I was in the hospital which was last Feb for some Infusion at Stanford I was shocked they did not have all my meds and no big deal cause we live close by so pack all her meds.
Angela

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Welcome to the family cmac… I guess the best advice I could give is to keep positive & remind her that it will be fine & she will get through this… my wife did this before my surgery & it really helped along with keeping stress levels super low or next to nothing & creating relaxing environments… it’s not an easy thing to go through but remember there’s always someone out there much worse off & that keeps us strong… sending prayers for you guys & please keep us posted here… God bless!

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Thanks for your story, its great to see the different situations to see what may or may not relate but more so to educate myself!

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This is a great idea!!! I love it. Thanks for that!

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Thanks for this Merl, great to get some good advice I can use to support her the best I can!

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Yes she will be. Its a frightening thought! She doesn’t like to talk or think about it at the moment.

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Thanks mate

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