So we’ve been to Alder Hey children’s hospital today to discuss Millie’s angiogram back in November. They’ve confirmed again that the AVM has gone, completely obliterated with no residual/nidus. They will complete an MRI in 3 years and a angiogram again at 5 years and if all OK, she will be fully discharged. They will keep her on her keppra meds for 1 to 2 years. This is overall great news but I can’t help think about AVM regrowth. 3 years seems along time for next scan.
On the other hand, having an angiogram is a non-trivial operation plus a good dose of radiation built in. So really it’s a balance.
The best thing you can both do is to put the whole thing behind you. When you do the repeat in three years time, hopefully you’ll get a similar confirmation that you didn’t need to worry about it either. Meanwhile, don’t worry about it.
Easier said than done, I know, but give it a go.
Well done both of you!
Absolutely fantastic news! I see their follow up as “routine” and any concerns they would veer from the usual and make them much sooner. I think turn the page, although there will certainly be some stress in three years it sure is all positive. Take Care, John.
Hi Millie, That is good news. I’m happy for you.
One caution: keppra
I was on it for seizures and had bad results emotionally. Very bad. There are alternatives if your daughter reacts badly. I’m on lamotragine which is a better fit for me. Greg
Re. keppra. . . . I’m involved in a parent’s group for children with epilepsy. B6 seems to be what’s recommended to take along with Keppra and it minimizes the kepprage. That said, check with your doctor before adding in any supplements.
Sharon from ModSupport
I have started B6 along with keppra, having some side effects but not on the emotional side as of yet. My Dr. supported same, there certainly is evidence to support it helping. Take Care, John.
Congrats on a clean report. I’m 30 years post bleed and surgery and don’t know about any regrowth of my AVM.
However please ensure you have full copies of all scans etc in case you need to go back for more follow up in 20 years.
I now have a scan showing a hole in my brain which I know was not there 15 years ago but I can’t prove that because I didn’t get a copy of that scan. Equally they can’t prove that my brain is stable as they refuse to do more scans.
So I’m in limbo but I don’t want any more treatment anyway. However it would be helpful to me to have the full evidence available.
Best wishes for a continued recovery
Glad to hear that they’ve advised the AVM has been completely removed… unfortunately there is a process to undertake further check ups but this is normal & should not be stressed upon.
I was always concerned about a regrowing of the AVM but over time after multiple check ups it is what it is and could be much much worse… God bless!
Awww Adrian, this is what is freaking me out. The chances of reoccurence. The surgeons have told me the chances are very low and they’ve never had a regrowth case. They have told me that they don’t expect to see anything suspicious on her next mri in 3 years or her angio in 5 years. I just seem to see a lot of stories about children having reoccurrence. What is your thoughts on reoccurrence, what do you think causes it?
I hope you are doing ok? Lets hope 2023 ia a good year for us and our families.
Awww Tim, i see you are in the UK too. I am sorry to hear you have had to experience the devil of an AVM. Its good to hear that you are 30 years post bleed and surgery. Thats a good shout about asking for copies of the scans. I have left them with questions to answer and they said they would do so.
A hole in your brain?? Do you mean like a empty space? How come they will not perform more scans for you? Like you said, you are left in limbo not knowing. Can you get a second opinion from elsewhere?
I send best wishes to you.
Thanks Richard for your words of wisdom. I do wish i had that switch to turn off my worries. I exhaust myself with my research and thoughts.
It was so good to get the results of her angio in November confirmed and it was positive news.
I hope 2023 is kind to us both and our families.
Thank you John for your words of wisdom. You are most probably right. I am a born worrier and i wish i could shut down at times.
I hope 2023 is kind to us both and our families.
Thank you Greg for your kind words.
Millie is on 750 x 2 of keppra a day and so far appear not to be causing any issues…touch wood.
She will remain on them for another 1.5 to 2 years before being reviewed again, or if anything changes in her moods etc.
Lets hope 2023 is kind to us all this year.
Thank you Sharon. I will look into this. Millie appears to be ok at the moment. She takes 750 x 2 a day at mo but will be reviewed in another year or 2.
I can’t post a photo but you know how brain scans are roughly symmetrical. On one side is a large area of healthy brain and on the other is a similar area but about 1/3 of it is completely black. This difference was not on a scan 20 years ago but I can’t prove that because I didn’t get a copy of that scan. My mistake.
A Neuro surgeon has told me that the surgery in 1990 removed the AVM and used lots of ‘sticking plasters’ to give me a quality of life for over 30 years. Over time these plasters will be less effective, hence I’m on a downward curve.
All that aside I’m still independent and active but who knows how long that will last. Remaining independent is the only priority I have.
I’d suggest not over thinking the AVM situation, you can’t control any of it and just making the best of whatever happens. I don’t want to scare you but I also want to provide a realistic scenario from my once optimistic viewpoint
I live in Nottingham which is a good centre for neuroscience.
@MILLIE0981 I completely understand cause it was one of my biggest fears & in 2019 I was told it had reoccurred during a check up MRI, however after an angiogram it was confirmed it was an error an the MRI had picked up residual from my surgery being a more advanced machine… BUT I lived for 3-4 months thinking it had returned now with a small family & my third was just a newborn!
My AVM was removed at 30 in 2011 & I was told seeing I was not old but also not a child there was a risk but confident they got everything during surgery… my understanding is children have developing brains so the risk is higher but not always the case!
I guess regular check ups when required is a good way to catch it if it does come back so it can be eliminated again… when I had my scare in 2019 my neurosurgeon was confident even so it could be easily addressed as technology had advanced so much in such a short period.
Definitely consider technology just keeps getting better & it won’t be back but if so they can get it much easier than they had done originally… BUT it’s not coming back
We can’t stress things that may or may not happen but as a parent I do sympathise & understand cause that’s what we do as parents lol.
Hope I answered your questions but please be positive & trust the experts… God bless!
This is really great news. So happy for you. Try really hard not to think about what may or may not happen in the future. You’ll deal with whatever does (or doesn’t) come your way.
However we can help you move on, we’ll try. It is absolutely exhausting worrying about stuff that could prove to have been a wasted worry. It is much better for all of you if you just put it behind you and focus on the future.
All of us recognise how difficult that is, though, so don’t criticise yourself when you find it hard.
I had a friend when I was at work, nearly 20 years ago now. He went on holiday en famille to Sharm el Sheikh, partly to celebrate his oldest son’s 18th birthday, do some snorkelling and all of the wonderful things that that part of the world has to offer. Unfortunately, they were caught up in a terrorist attack on their hotel and his son was killed – the son actually ran to help the people who had just crashed into the front of the hotel, only for it to be a car bomb that went off. I think we can all imagine the darkest and most difficult place that this pushed my friend into. The worst possible situation.
However, it didn’t start and end with the explosion.
My friend and his wife spent so long in mourning for their son, I feel they missed the teenages of their other kids. They really couldn’t get past the loss of the one. Literally they lost years.
So do what you can to focus on what you have got, what can be for those few years until the angiogram, with optimism. It really isn’t worth spending all of that time worrying or in limbo. Make sure you focus on today and tomorrow and enjoy Millie being the age that she is because it all passes by, whether we notice it, or take part in it, or not.
I know this is a really difficult story but I hope telling it could help.
Lots of love,
Thank you Richard,
How very heartbreaking for your friend and his son. My husband always says…life is what passes you by when you are busy making plans.
I only have the one biological child thats why she is so precious to me. She is my rainbow baby after having a miscarriage in 2007.
I am still going to therapy every friday and things are getting better.
I am so thankful for all the lovely people in this world that have been there for me through these darkest days. This group has really helped me through and i am forever indebted.
Thank you Lulu for your kind words. It means alot to me.
I hope you are doing well.