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My poor girl - surgery in August


#1

Hi my name is Nicola Dacosta and I have a beautiful 17 year old daughter who have recently been diagnosed with a brain avm it all started at the beginning of June she went to work as normal when after a few hours I had a phone call saying Sophia was not well and she couldn’t speak properly and felt strange. I rushed to pick her up and was presented with her acting completely out of character almost drunk like behavior she complained of left sided pulsing and a odd sensation down her body. After tests it revealed Sophia had a avm 5/6cm nest like tangle on the right side of her brain radiation is not and option so they have said they can do the emobilization with surgery to take away the avm however it is a risk of stroke or it could be fatal the other option is to do nothing with a risk of a 4% bleed increasing each year we are absolutely beside ourselves with worry and anxiety we have been told to make a decision and the surgery will happen one Monday in August my poor girl please can anyone off any advice thank you for reading


#2

Hello, first I am hoping everything turns out well! Her story is so similar to mine so I understand how you are feeling as they told me very similar things. I chose to do the embolization and took the risk 5 years ago. It was not easy on my body but at the same time my other options (radiation for a year) did not seem like a good fit. What I recommend is to be as strong and positive with her as possible. I know it sounds like a cliche but when I was in the hospital my friends and family being supportive/loving/positive with what ever decision I made helped me recover so much! Any decision you all make as a family just go with it 100% and fight fight fight! :slight_smile:


#3

Thank you for your response Stevo it’s been the most difficult time of our life’s and I know it’s inky just beginning I thought they would offer gamma knife but I think it’s to big 6 cm with feeders going into it if you don’t mind me asking did you have to have brain surgery to take it away after emobilization and how are you now it’s a scary time I am trying to stay strong for my daughter I just hope we will get through this it’s amazing how your life can get turned upside down overnight I hope you are doing well


#4

Nicola,

Hi. It’s great that you found us. I hope some people in the @ParentsAndCarers group will chip in.

Discovery of an AVM is undoubtedly one of the most shocking things. Sophia’s AVM does sound on the large side, so perhaps carries more risk than some people. However, there are some good outcomes to be had and there are plenty here, like Sophia who’ve had a bleed and surgery to sort out.

My AVM didn’t bleed. I was lucky and found it before it did any damage and I was able to have “just” an embolization. Surgery is undoubtedly more invasive but may be more important for a larger or more extensive AVM than mine.

The main thing is to satisfy yourself that you understand the risks of surgery and the risks of leaving it and that your neurosurgeon is the right man or woman for you. As a parent, I’m sure you’re putting yourself through the mill even more than Sophia. Again, that’s absolutely normal.

However we can support you at this difficult time, just say.

Wishing you all the best,

Richard


#5

Hi Nicola…Trust your neurosurgeon. It’s his/her job to give you all the options so you are informed. No one expects you to choose like shopping for a new outfit. The neurosurgeons know what the best options are. Although they can never guarantee 100% recovery they will recommend. My AVM bled (2016) which was how it was finally diagnosed. You don’t want that. I was in no condition to consider options. My neurosurgeon opted for coil embolization and it was a success. The fistula feeding the AVM has disappeared. Although I am now having problems with blood flow thru abnormally large veins (left over from the AVM) I am going tomorrow to have a stent inserted to increase blood flow. It’s important to maintain a good relationship with your surgeon. It is a comfort to me to know that mine is never more than a phone call/email away. Good luck to you.


#6

Thank you for sharing, everyone here has much compassion for your situation, all we can do is share and support, just know you are not alone, get as much info and feedback as possible and decide what is best for you, we are all different so there is not one right answer, myself, 30+ years ago, was in a very similar situation finding out I was born with a 2% chance a year of anuerism at 23 and never knew it, having the same vessel cluster on the left side, so 100% chance of anuerism by 50, I chose removal surgery, all I can say is follow your heart, it will never fail you, try to stay positive, wishing you the best outcome possible, keep us posted, take care and be strong, POSITIVE !!!


#7

Thank you everyone for your replys I don’t know why it says surgery next week as it’s not she has to have it one Monday in August I think they will start with emobilization to see if that helps just anxious this may cause a bleed the hospital is a university hospital of Wales and we’ve been told it’s done a total of 60 avm s in the last year it’s also a teaching hospital I will have a call tomorrow to discuss things further it’s an awful decision to make still trying to get over the shock of what we been told however we have to be strong and fight for my darling girl to get better thanks again I really appreciate your input x


#8

Hi Nicola, You are not alone. My 17yr old son was diagnosed with a 5cm AVM a year ago. This is certainly a life changing event and I know what you are feeling. As someone else said trust your neurosurgeon and if possible seek out other neurosurgeons to get multiple opinions. In our case the AVM was too risky for surgery given its location so we embarked on 2 rounds of Gamma Knife radiation. He is doing ok but does have migraines that effect his vision. Good luck to you and your daughter. I know that everyday I still wish that I can be the one with the AVM and not my son…but I know that this is normal and am now focused on doing everything possible to help my child live a full life and deal with his AVM.


#9

I’m so sorry to hear about your daughter. I had a bleed on my cerebellum on December 22nd of 2017. Follow up angiogram in February showed an avm. I know what you mean about th shock. I’m still in shock, but life must go on. I had embolization and then a craniotomy to remove the avm on March 7th. I knew there were huge risks, but the risk of leaving it are just as bad. An uncontrolled bleed can lead to significant damage. I’ve had a pretty good recovery(speech and cognition totally fine, but my balance and coordination are awful) walking around now and pretty independent. It’s been a very difficult road, a lot of hard work and just as many tears.
I could not tolerate the thought of the avm hanging over my head. I did speak to two other neurosurgeons who recommended surgery. Maybe a second opinion would help to clarify things for you?
There is no easy answer here. I just hope you can come to a decision that is right for your daughter
Best of luck
Carol


#10

Thank you both for your comments I guess there’s no easy answer as in both cases ie if it’s left untreated or if you go for treatment there’s still a risk of a bleed which can result in the unknown happening

I am sorry you are all going through this awful situation it’s unbelievable how life can be turned around so quickly we all love our children and to hear there’s a malformation in her brain was so so heart wrenching however I know we have to make a crucial decision moving forward and put out trust in our neurosurgeons I just pray for the best possible outcome

I sincerely wish you all the best and send lots of love this has really shook me to my core


#11

Nicola,

I think the title error was mine! I thought I’d change your title to make sure people understood the thread and would read but I read one of your sentences as “on Monday” not “one Monday”. I’ve changed it again so it makes more sense.

In terms of the embolization, I can tell you it is an ok step. You’re right that it carries risk and I’m not clear whether as a partial step it reduces risk or increases it but I reckon it’s an ok procedure to have as a first visit to hospital. I don’t get on with surgery of any kind and I got through it just fine.

I’ll need to let others encourage you as to how good a craniotomy can be but there are definitely lots of good outcomes here.

I expect the docs will be having a multidisciplinary meeting to agree treatment, if they’ve not already done so, so one doctor would not be making a lone decision… it will be balanced with different approaches and others’ views, which I think is a first class way to determine treatment.

How is Sophia about it? Can you tell?

We’re all here for you.

Very best wishes

Richard


#12

Hi Richard yes they had a meeting to discuss all her options she’s had a mri ct scan plus a angiogram so they have studied and planned what is best for her I guess.

Sophia is just ignoring it and feint want to talk about it she is scared I think and just wants he life to go back to as normal as possible she used to go out a lot with friends and socialize drink and also smoke a cigarette now and again however now she’s not drinking at all but still has the odd cigarette which worry’s me

I just hope we can get treatment done ASAP as I have read that a lot of avms bleed before surgery

Thank you for your time
Nicola


#13

If she were to look after herself perfectly for the meanwhile, its a good idea to come off all stimulants, so no coffee, drinking, smoking because it puts your blood pressure up. But, she’s going through the same OMG moment as you, just in her own way, so how much you can influence her only you know.

We do have people here who’ve gone through this at her age, or a bit older (20s) or a bit younger (13-15? I think, including a young lady in Wales who had radiotherapy rather than cranio) if she would like to swap messages with such folk.

Not everything needs to be in a public post like this, either. You / she can message people more privately if that works best.

However we can help you through, just say / ask.

And don’t worry so much as to need to rush to surgery. If she feels odd / poorly again, go straight to A&E, but if the doctors were worried she needed urgent care, she’d already be getting it. Just get used to the idea and let yourself calm down a bit if you can. The hospital will set the timetable and unless that seems far too slow or she is becoming poorly, just relax into the process. (Easy said!)

Best always,

Richard


#14

I have a cerebral AVM I was diagnosed after suffering from a stroke at the age of 5, at 16 I had a haemorrhage. My AVM is inoperable, at 8cm and connected to all my main arteries, anything you want to know that isn’t regarding surgery I’m here to help


#15

This seems fairly similar to my story. I was diagnosed when I was 16 with avm about the same size of hers on the back left of my brain. I did multiple rounds of embolizations and two gamma knifes after that. Everything was successful. I am 30 now and the avm is completely gone. I lead a normal life and no longer get migraines. I wish you both the best. Take care. Stay positive.


#16

Hello. I’m thankful they found her avm now & that her embolization & craniotomy will be soon. My husband’s AVM was almost exactly the same as your dear daughters. He had both, embolization & craniotomy. His young age (34 yrs) made the surgery a must & also helped afterwards. I can’t imagine how worried you are because it’s your daughter but I do fully know how UNEXPLAINABLE it all is! There wasn’t really anything someone specifically said that helped. But, being with people who TRULY understand offers alot of comfort! Peace! Faith! From the moment my husband had his first seizure (how we found it), pre-op stuff, many neuro Drs, statistics, ICU ward, recovery… to his 9 inch long scar… Thankful God had a plan for my husband & He has a plan for your daughter too. Focusing on her huge positive thing, they found her AVM & can operate! Everyone has a different story & there’s something to learn from each one of them. Your dear daughter will be in our prayers!


#17

Nicola:

I wish for the very best outcome for your daughter. I know how devastating an AVM diagnosis can be. Heck, we all know. It’s a very scary time in your lives right now. In time, and with support and encouragement from this wonderful group, we stand ready to provide you with any information we can to ease your fears by sharing our vast experiences. What helps me deal with all the nuisances an AVM diagnosis brings is P&P
(Prayer & Patience). Give it a try! All the best,

Sharon D…


#18

Hi Nicola
How scary for you and your daughter.
I was 19 when my AVM ruptured so trust your neuro team. Take the op and get the recovery started.
I spent 5 years relearning to walk and talk.
I’m now 47 so there is hope
Good luck


#19

Dear Nicdac

I cross your fingers with your little daughter.So her AVM is so big to be treated by gamma knife to avoid surgical intervention? Bad luck and god with your daughter! In my case I had cca 7mm vein malformation and smaller bleeding inside my head but it come with hydrocephalus.I have almost died in 2014.But god with me and I am entirely healed.I am 10% a lucky people who survive such disaster.Cross your fingers and trust your neurosurgeons.All you can do…


#20

Hi Nicola,
I hope your daughter is ok. I have a brain AVM and had gamma knife surgery this time last year when i was 14. I am 15 now. As I am young I may be able to relate to your daughter. If you so want to get in touch or anything you can always message me. I do not know if the surgery has gone well because it takes two years, however I am fine and my life is pretty much unchanged. I hope the same for your daughter.

Ellie