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AVM Survivors Network

My poor girl - surgery in August


#21

Thank you all for your kind words and stories Sophia is booked in for emobilization on one of the first two Monday’s of August if it bleeds she will go straight in for surgery really daunting time and life is really in hold we have good days and bad days I just pray that she has a good outcome and not left with any deficits as she is such a outgoing healthy young girl it’s so awful avms are dreadful I wish you all well and I pray you all get better lots of love Nicola


#22

Hi Nicola. I’m so sorry to hear about Sophia. How awful for you both. Your post struck a chord with me because I also have a large AVM, in my Cerebellum. It is not suitable to surgery (too much risk of deficit) and gamma knife isn’t an option unless it can be made smaller. Ho hum. So I am living with it. I know its difficult but my advice would be for Sophia to get on with her life as she would have before the discovery. Of course, she shouldn’t take unnecessary risks. But dwelling on this is enough to drive you mad and the stress can just make things worse. Nobody knows how long they have here and it isn’t the case that an AVM will definitely rupture. Apparently some have only been found during post-mortem and the person was never aware. So try to relax and I wish you all the best.


#23

… post mortem of a very old person, is what you’re saying. Hence living life to the full, unaware of an AVM. Otherwise, “post mortem” sounds a bit scary!


#24

Sorry, yes you’re right. Sometimes I forget to clarify what I’m saying!


#25

Nicola,
YOu and your daughter are in the worst spot right now. Knowing and waiting for August to come safely.
I had a bleed near brainstem and half year later was given option for surgery; the two weeks before this was done I was scared to death I wouldn’t make it (given same options you shared). Easier said than done so forgive if sounding flippant, but be relaxed and grateful.
Recovery will be a new opportunity to grow without an AVM. Maybe focus on how life will be changed for the better after the procedure.

J


#26

Hi Nicola,
I can’t relate any more to your situation right now. I was diagnosed with a 3-4 cm AVM about the size of a golf ball in my left temporal lobe. I am currently 23, about 1 year post craniotomy from when my AVM was removed. I found mine with a seizure that I had. My doctors told me (with my situation) that the best option was to perform embolization and surgery to remove the AVM. I know a craniotomy sounds terrifying and invasive, but if your doctors are confident they can remove with surgery, it might be your best option. My AVM embolization was about 6 hours, following this they took me for a 10 hour craniotomy to remove the AVM. I am not a doctor, but the steps your daughter’s doctors are taking are very similar to mine, and I came out A OK after surgery. Words can never make your fears go away, and it will be terrifying. But stay strong for you daughter, and know that all will be okay. Being so young going through this is very difficult, but tell your daughter this is only for a short time, and she’s going to coming out a stronger woman after. Prayers for you!


#27

Thank you this is a lovely post and very reassuring to know yours was so successful how wonderful it must feel to know! It has been by far the most challenging difficult situation we have ever had to deal with and it’s onky just begun I really feel for my daughter Sophia she has no wanted to discuss it as I think it’s to much for her to address as she’s so young. We will have the procedure one of the first Mondays in August I just feel terrified of how I will cope but I know I have too and I will put it in the hands of the surgeons and god and pray hard for a good outcome thank you so much taylorlyss I hope your have a long happy life bless you :heart:


#28

Of course! It’s one of the most terrifying things. Trust your surgeons and pray. She will be in great hands. I missed many of things with my friends, but those missed things were so much worth being alive after and now being able to experience them! Prayers for you :heart:️ & thank you!


#29

Dear Nicola,

Apologies for a very late response! I am very sorry to hear of your daughter’s diagnosis. I hope story can help.

I was diagnosed in may 2017 at age 22 with a very aggressive case of AVM at around 4cm (but maybe bigger since all the letters refer to it being large). It covered the entirety of my left occipital lobe. It is deeply engrained so the entire lobe would essentially be removed if I were to have a craniotomy leaving me with total right visual cut in both eyes (legally blind) - hence not an option. Since the risk was very high of a bleed, radiosurgery was not an option. My only option was embolisation which I had on Jan 26th this year.

Please bear with me before panicking but I did have a stroke during my embolisation. However I don’t regret it. Atleast the stroke happened whilst in surgery so the neuro-radiologist could monitor it and make sure It didn’t affect my whole brain. A stroke outside of the operating table would have either been fatal or I’d be left severly disabled. As a result I did lose almost all my left side vision in both eyes but due to the careful work of my neuro-radiologist enough central vision remains that I can get about without aid (although it is still difficult). My point is, a stroke for me, was not the end of my world. I think fearing it before the op was worse than experiencing and living with it in reality. I am little slower than I was in terms of reaction and processing times, my short term memory isn’t so good and ofcourse I am awful at finding things now. But I still have so much to look forward to in life and I am genuinely happier now than I was before the op. This time out has given me time to work on myself and self improve to a point I doubt I’d reach this early without it.

Also the embolisation successfully reduced my AVM to less than 1cm now! The remaining AVM covers the part controlling my left central vision in both eyes (which allows me to see full faces, see motion and depth of field ect). The hope is for me to have gamma knife radiosurgery to treat my remaining AVM, I have an angiogram 20th August to confirm whether this is an option.

Despite the considerable risk still on my shoulders I have adapted to a new outlook on life: I don’t worry about something unless there is something that has happened to worry about. If I lose more vision I will have to deal with it but I’m not going to waste time in the present worrying about something that is a possibility and not a definent thing.

As for supporting your daughter I would recommend from my experience not smothering or babying her. Being overly positive isn’t great either - she’s not ignorant to the risks involved and doesn’t need them to be undermined. I think the best attitude is just being the person she knows she can talk to about any worries, someone who doesn’t stress her out or project their panic onto her, and just acknowledging any concerns she has and validating her feelings. As much as I appreciate my parents support, I found they coped with the news alot worse than I did which made me feel frustrated having to be the adult reassuring them and dealing with their responses when I should only have my situation to worry about.


#30

Thank you Corrine for sharing your story what a difficult journey you’ve been on it’s a devastating finding and being told it’s 5cm with 2 venous pouches and the surgeons face looking worried was very scary my daughter Sophia had been upbeat and quite relaxed about the whole thing however she will not discuss it at all and don’t like me to discuss it with her I think it’s to big for her to handle.

I totally understand what you mean by babying her and fussing her I have not handled this problem as well as I should have and I feel that Sophia has tried to be strong and I’ve been doing all I can wrapping her up in cotton wool I am trying to not be like that anymore so thank you for sharing how you felt

We have an embolization booked for 16th August which they are hoping they can reduce blood flow if not she will have a resection at the same time so I guess it all depends on how the avm reacts I feel very empty and scared although I know I have to be strong for my girl and try and get through this I will be there no matter what the outcome however the uncertainty Shakes my core I just pray she will be ok.

I really hope you can have radiation to eradicate the last remnants of your avm you are courageous and very brave I wish you all the best on your journey you are a real survivor xxx


#31

Hi Nicola,

I think this is just how Sophia copes with this situation - if not talking about it helps her not to feel stress and think of it too much then I’d just allow her to do that.

Try not to feel guilty about how you’ve coped with this, you can’t change that but you can change how you cope right now. I’d just say to her that your always there for her and as much as this all worries you, you understand that this is her AVM and her struggle. That you will support her however way she wants to be supported and respect her wishes. I found my parents treating me with kid gloves kept reminding me of my AVM and that I just really wanted to be treated like normal/pre AVM times so it really stressed me out. Also my parents worried so much I felt like I couldn’t go to them without triggering them to react in a way that would lead to stressing me out more than I was already.

I can’t imagine how difficult it must be for you though. Like for my parents - we were told it would be a maximum 2.5 hour embolisation and ended up being 7.5 hours. I was ofcourse out of it but my parents were waiting and not knowing what was happening, trying to cope without going nuts.

As you said - focus on knowing how strong your daughter is and that whatever happens she will fight through it. I’m almost half blind but I fought through it and I’m now able to live independantly and still succeed in my goals. It may be a slower and more difficult route but we will still reach the same destination.

Unlike many young people, me and Sophie wont coast through life, we won’t take life for granted. We will be motiated to live life to the fullest, be much more emotionally developed and know our priorities in life many aren’t aware of. Most people live in fear but me and Sophie will know whatever happens in life, we can get through it which is really empowering :muscle:

You are welcome to PM me any time to talk, vent, have emotional support or just chat and bring up your spirits!

I also recommend looking into getting a counsellor which I urged my mum to do but she didn’t. It will help you have a space to express all your feelings without worrying about it affecting your daughter, you can let go without worrying about judgements or worrying anyone else, and then come home feeling stronger to support Sophie at your best. As much as this is about Sophie, you do need to look after both your mental and physical health so you can be at your best to be Sophie’s rock.

Lots of love,

Corrine


#32

Thank you so much Corrine i will definitely be taken your advice and try to let Sophia breath a bit more without me fussing around her all the time I really appreciate you taken time out to message us and share your story you are a real inspiration and a young lady with so much fight I wish you well and will continue to be there for my daughter lots of love :two_hearts:


#33

Eep just noticed I started off correctly saying Sophia then memory blanked and said Sophie, can tell I’m both tired and my short term memory hasn’t quite improved yet!

You are an amazing mum, Sophia is a lucky girl!

Lots of love,

Corrine


#34

Oh Nicola, I am so sorry. My family, wife and son went through a very tough time (It is the hardest situation I have gone through ever) when my AVM ruptured this year without any warning signs. Luckily my emergency crainiotomy went well and I had an angiogram which discovered the AVM in the first place. That same day my embolization was a success too. This avoids possibilities of future bleeds. Be patient with her, motivate her, and give her a ton of love. Trust the doctors, due to my rupture my recovery has taken 4 months and still going strong. I had to re-learn how to walk, run, and coordinate all over again. technology has come along way. I am here to support you and you can reach me here or my blog directly anytime!

Bless you and your family!


#35

Thank you mario I’ve just read your blog wow what a journey you’ve been on I am so happy for you and your family that you are doing so well after such a traumatic event. Sophia’s avm is 5cm with two venous pouches so it’s big she has been very luck as it’s not ruptured and we have a embolization booked for 16th September which may result in a craniotomy depending on whether they can reduce blood flow it’s a very worrying uncertain time however I know she needs to get it done as a bleed would be a lot worse I just hope they can remove it without deficits or a stroke I pray every day and try to remain strong thank you for your kind words all xx


#36

Hi Nicola, Im so sorry to hear about your daughter but please rest assured that there are so many success stories from AVM survivors right here alone… When i was told I had an AVM in Christmas 2010 I didnt expect to have a bleed 4 weeks later… but thats what happened and i think having the family support, faith in God and trying to be positive before my surgery was the key for me.

Your daughter needs to see no fear and reminded how things will be just fine on those days she gets worried… I know its easier said than done but positive feedback does help more than what many ppl think… Please keep us posted and know this is a hard time in your life and in hers but there is light at the end of the tunnel and you will look back at this stage of your life and be happy what was achieved… God bless!


#37

Just checking in to see if the surgery happened and how y’all are doing?
Lisa


#38

Hi Lisa thank you for asking! Sophia has her embolization on the 17th September now they changed it she goes in on the 16th September they are going to try and stop the blood flow as much as possibly however if they can’t stop blood flow they said they will resect it under the same anaesthetic so either 3 hours or 12 hours absolutely terrified to be honest as she has a 5cm avm with 2 venous pouches which scares me as it may bleed please keep her in your thoughts I am trying to be strong and a good mum but it’s so difficult I don’t know how I am gonna get through it xxx


#39

I will be thinking of you both on the 17th, although it is scary - it will be a relief once your girl is finally able to move on to recovery stage and life AVM free. I cant imagine what it must be like as a parent (or carer) waiting whilst the surgery is taking place. Your girl is young and strong and she will get through this :muscle: :heart:

Lots of love,

Corrine


#40

Thank you Corinne you are such a lovely young lady and your words are always wise and encouraging no matter what happens I will always be here for her I will stand as strong as I can and hope for the best possible outcome I hope you are doing well your amazing :kissing_heart::two_hearts: by the way Sophia turned 18th today so we had a fab time xx