Hello, Millie’s mum here. I’m really struggling at the moment so i am going to call the doctors in the morning. I have suffered with depression for years now but the last 6 months prior to my daughters AVM rupture, i was in a good place. Whilst i am blessed my daughter survived her AVM rupture after Craniotomy, i am so stressed out, anxious and worried that it will come/grow back. We have an angiogram in October. I am just waiting for the date. I am trying to remain strong for her but i am breaking on the inside and feel so low.
It’s completely understandable. It’s a tough thing to be a parent of a child going through this.
I don’t know the stats but the impression I get is that repeats after open surgery seem to me to be lower than other modes. So I think she’s had the best chance to put it all behind her.
Just an anectode from a dad whose daughter had a bleed/crainotomy six years ago: She is getting good care, she is getting followed. Chances are good that what you are worrying about, is simply not there. If something were to happen, you are in a good place to be able to deal with it. She wants you to get better as well. If i could turn the clock back, i would channel some of the hours of worry, to take care of myself and the family; to be able to support her recovery better in the long run.
Hello Millie’s mum, I’m really feeling for you and I can tell you’re having a rough time.
Hopefully, her avm won’t grow back and she’ll live a decent pain-free life.
Even though you feel like you’re breaking on the inside, I doubt you will break. It seems like you’re aware of your depression so you should continue to do what ever is necessary to care for yourself. G
Hi Millie’s mom, this is Ellie’s mom! I can very much relate to what you’re going through. I was in a similar place after my daughters craniotomy. I did a lot of therapy and I’m in a better place now. Wouldn’t say a good place, but better. We’re 2.5 years out now and it still gets to me, but my daughter still has some abnormal vessels were watching so we haven’t really closed that chapter of our lives. I think that if her post op angio was normal that I would be in a much better place right now… until then this is just the hand I’ve been dealt and I’m trying my best to keep my head above water. My daughter is also having her next angio in October. Hoping for good results for us both but if you’re not already in therapy I would recommend it! I also did EMDR for PTSD and that helped
I am so sorry to hear you and your daughter are going through this. I hope and pray all will be better and eventually ok.
As a mom of an AVM rupture survivor I get it. As a mom who’s son discovered a new AVM growth, I live it. As humans worrying is normal and it’s good you are using this forum to vent and share. This rare disease is anything but normal. Get these feelings out in a safe space as this is heavy stuff to manage.
I will share advice we received in effort to help- A therapist told us to live in “healthy denial “. We have no control. Be smart but don’t waste precious time worrying about the what ifs or stop doing something because your worried. If God forbid it ruptures again I want to know I did everything I could to help Jake enjoy his life and recover.
As with advice it’s not always easy to follow. I hope you get out of our depression and all turns out the best it can for your family.
It’s completely understandable to feel this way and as a parent I really can feel your struggle cause we live our life’s protecting our children… if you need to speak to someone or need professional help please go and get it… we shouldn’t have to live with such worry and thoughts inside and it is unhealthy to fight it on your own at times.
Please feel free to reach out here and vent as much as you need to cause your child needs you and each life is precious at that… look after yourself and don’t feel like your alone… God bless!
I can only “try” to understand - and, it has to be very very difficult
I mentioned this before in one of your other threads - shoot, I’d take another to the head 5 fold instead of seeing my son go through it.
Just try - all you can do. Reoccurrence - well, it’s some all of us somewhat on here have in common. Will it happen again? Will I grow another - etc.
From that aspect - personally, I just approach it one day at a time. Shoot, I can have some bad luck & get hit by car while walking before I have the chance to grow one back. . . At least, that’s my train of thought
Try your best - your daughter definitely needs you to:)
When I had my embolisation back in Apr 2017, I felt very weird and (honestly) not at all convinced that I was fixed.
I had a repeat angiogram at about 8 weeks post and that showed the doc “100% fixed”. I carried on, got my driving licence, resumed normal life to a great extent. By the October, I had a few days of feeling very dizzy and was concerned that my overall feeling of weirdness indicated I was right: I wasn’t 100%.
To cut a long story short, I had a number of subsequent scans and the conclusion was that all was ok. This took 18 months after my first op.
When did life actually change for me? When did I feel ok? The moment I accepted the doctor’s recommendation that there was nothing wrong and that I should just “resume normal life”.
Honestly, since then, I’ve had the occasional thing that has bothered me but none have been “significant” and I’ve not been back to the doctor re my DAVF since that final recommendation.
I think acceptance of our situation is a keystone to recovery and the resumption of a good life. It is very easy to maintain a vigilance for it but I don’t think it helps. My recommendation to you as much as to Millie is to put it in the past. It has been done and life in all its colour should be resumed. Things may feel weird from time to time and if they feel worrying enough, go and get them checked out. But otherwise, it is wholly important to put it behind you, enjoy life and face all the challenges ahead without being distracted by the one that is behind.
Hi Mike, 49 years ago I was 14 years old. After one craniotomy for AVM, long recovery in ICU, finally out of ICU, arteriograms (I think they call them something different now), told that the surgery hadn’t gotten it all and I needed to through it all again (It’s much much worse the second time when everything is still tender and sore.)
I broke down and wept and so did my parents. I think that was the roughest day of my life and I’ve had some doozers. I really feel for you Millie’s Mom and Mike. Nothing I can say will help very much. This too shall pass. Heartfelt wishes, Greg
Hi Kate, how are you? I had my first therapy session yesterday. I cried the whole way though. I literally vented all my thoughts and feelings.
Did Ellie have her angiogram in October? If so, how did it go? Millie’s october angio got cancelled and put back to 16 November, then it got cancelled again until 7 December, so still not sure how her craniotomy went and if it removed the evil as i call it.
Glad you went! It was really hard for me to keep going to the sessions, because I’m someone who likes to shove my feelings deep down and ignore them, but it’s so important to let it out. My husband, also a shove the feelings deep down kind of person, never really processed the trauma we endured and ended up in the ER thinking he had a heart attack months later. Took 3 “heart attacks” before he was willing to admit he was having panic attacks and needed help. No more heart attacks since starting Zoloft! Lol
I’m sorry they keep delaying Millie’s angio. That is hard. Ellies first angio was scheduled for March 2020 when all hell broke loose with COVID and they cancelled us so many times. It’s so hard to mentally prepare yourself for a date and then have it moved further out.
Ellie had her angio last month and it went about as good as it could have, aside from getting the all clear that we so desperately want. Ellie still has some weird hypervascularity around the site of her old AVM, and there is a small area of really slow shunting. So it has characteristics similar to an AVM, but it is not a typical AVM. Unfortunately, there is nowhere to intervene so they want us to just keep watching it. Thankfully there was no progression at all, which the neurosurgeon said was “remarkable”. So they’re presenting her case again at NYU neurovascular conference to see if anyone recognizes what it is. They’ve done this before. It sucks, but they feel that the chances of this thing bleeding are very low just based on its characteristics. We will go through the rounds of second opinions again, but I’m taking a mental break for a little while we wait to hear about NYU conference.
Thanks for listening wishing you all the best at Millie’s angio.
but if you’re not already in therapy I would recommend it! I also did EMDR for PTSD and that helped