It’s great to hear from you and it’s fantastic to know that you have recovered so well. You must have experienced some very difficult times and I understand how brave you have to be to go through any of this.
We have decided to go with the surgery as all the advice, regarding our daughter’s case, has pointed in this direction. She will have the procedure on April 1st. It’s a relief to finally have a decision and a date. We know this won’t be easy but feel in good hands with the consultant.
Our daughter is being very positive but is having some dark moments as you can imagine.
We’ve all been there and I think you and your daughter are doing brilliantly: it’s the biggest challenge ever to mentally deal with this. For what it’s worth, I think if you’re being seen at GOSH or NHNN, you’ll be in the best hands possible, that they’ve taken second opinions from other international hospitals is beyond first class, and (just as an opinion) I always think it is best to go with the route that the surgeon is in favour of. So I think you’re set up for the best possible outcome.
Waiting for the procedure is quite a thing and sometimes the date moves backwards, so if either of you get bothered by that, do shout up. I think I was the worst person to wait for my op (which was 3 April some years ago!)
And actually going into hospital is a bother but honestly, she’ll be in great hands, they will look after her, take her through the day a step at a time. And the drugs are great! I was really bothered how I would cope with a sore head (I had an embolisation rather than a craniotomy) but I was surprised how much better I got through than I anticipated. I’m sure we worry about the unknown more than is helpful, so encourage yourselves when the time comes that she’ll cope with it better than you currently think.
@DickD
Thanks so much for your words of support. Yes, we really feel in great hands with GOSH and feel so reassured that they have done their utmost to gain other opinions.
Waiting is hard of course, but at least now we know what is happening and when. April 1st will come around very quickly, so we’re going to pack in as much as possible for our daughter between now and then. Lots of family time, seeing friends, the theatre etc. She is finding things difficult at school but she’s being so brave and throwing herself into extra-curricular activities.
She is also the one that told her consultant she would prefer the surgery to gamma knife…she was quite clear about this so I’m pleased that this is the option they recommended. I’m not sure I could have been as decisive as her - she makes us so proud.
The procedure will be done in 2 parts, so Lana will have the embolisation first to block off the blood vessels to her AVM. She’ll then have a day’s rest before they proceed with the craniotomy.
Can I ask how long you were taking the drugs for, and was there a lot to take?
Thanks again for all this.
Oh, I also wanted to mention that we have managed to access care from a charity called the Rainbow Trust. They support families who have a child diagnosed with a life-threatening or terminal illness. They provide emotional and physical support which is tailored to your needs. This could be anyhing from coming and spending time with your child whilst you are working or looking after other siblings, talking about how you’re feeling, or driving you to hospital appointments and supporting you/your child in hospital. I believe they are currently only UK based but could be so useful for some families in this group.
Basically, while in hospital I was on morphine for a day or two. The main thing was that I found the embolisation a much more gettable-throughable thing than ever I imagined: my imagination is my undoing most of the time.
Post hospital, I used paracetamol for a few weeks. I’m sure it is different for a craniotomy but others can tell you their experience with that; it is very variable with a craniotomy as far as I can tell. Some people obviously have a bleed during the craniotomy and that causes trouble but others are amazingly well in a few days.
I agree it is really helpful that Lana made the choice herself. There’s no better way for her to be comfortable about the way forwards.
Our daughter had surgey on the first of April to remove her large left occipital brain AVM. Her neurosurgeon even made a model of her brain, for planning, and gave it to her to look after until the day of the procedure! How cool is that?!
This was preceded by an embolization 2 days prior. She had a reaction to this… what appeared to be 2 tonic seizures, which was very worrying but all was okay.
Followong a 10 hour procedure to remove the AVM, our daughter is doing so well. She has more energy every day and no longer needs any painkillers. (she only needed paracetemol after day 3) .
She has been so brave and we are so proud of her. The team and nurses at Gt Ormond St are second to none!
That’s fantastic news and the model is pretty cool. Did she get to keep the model or just while in hospital?
It’s great to know she’s doing well and I hope you are a bit more relaxed, too. It’s never easy being a parent or partner of a patient going in for brain surgery!
I had my bleed at age 10, then Gamma radiation six months later. I required the surgery again at age 16, but then the AVM grew back and I had another bleed at age 23. I’m in recovery from my third Gamma Knife surgery… embolization never worked for me, and they tried twice.
Gosh, you’ve been through it! Fingers crossed that this Gamma Knife works for you.
Is there a reason that they haven’t tried surgical extraction? Of course this procedure isn’t appropriate for all AVM’s so there must be a good reason?