Hello, new member here. Just wanted to share my story. On 21 July 2022 my beautiful 9 year old daughter complained of a bad headache. We gave her calpol but within minutes she was vomitting prefusely. As a first aider in my work place i knew this was not just a stomach bug or sickness caused by migrain. I ran to grab my phone to call for an ambulance and upon return, she had collapsed and was having a seizure. The ambulance service said an ambulance would be with us in over 1 hour. As she had become unresponsive and her breathing was shallow, we got in my husband’s car and got her to our nearest A&E within 20 minutes. She had a CT scan and we were told the devastating news that she had a significant bleed on her brain caused by an AVM rupture in her frontal lobe. The nurses prepared us for the worst. My daughter was placed in an induced coma whilst calls were made to the specialists who within a short period of time turned up in jeans and teashirts from home. They transferred my daughter by ambulance with a trauma team to a childrens hospital a 40 minute drive away. Here they took her straight to surgery to install a drain to release the pressure in her brain and also drain the blood. We were again told, she was critically ill and may not make it. Given the determined girl she is, she made it through the first surgery and was taken to ICU. The following day her pressure was still sat around 22, when it should ideally be 15. They took her back down to theatre and performed an angiogram to release glue to slow down the flow of blood in the AVM before then completing a cranotomy to remove the AVM and the Heamatoma that had formed from the bleed. Again we we told she may not make it. She did make it. She was taken back to ICU, where she remained from Thursday to the Monday. They kept her in the induced coma to allow time for things to settle within her brain following the major op she’d had. On the Monday, they began to slowly ease her sedation and within hours she was twitching and responding to us. She opened her eyes within 2 hours. She spoke things that did not make much sense but i was so relieved she had made it. Hours later she became quite alert and with drugs still in her body she started ripping out all sorts of things from her vital leads on her chest, feeding tube in her nose and canula in her foot. It was really distressing to see. After experincing some hallucinations (delirium) for few days, which is quite common after surgery and sedation, she started making more sense. My girl was back. We had been told by the surgeon that the AVM ruptured in part of her brain that would not cause any long development issues. We had nights of her lying awake at night with restless legs and she wasn’t getting the much needed sleep she needed. They did an ecg as her heart rate dipped at times when she was sleeping. Turns out she just was in a deep sleep and beacuse she is of athlete build and physically fit, it was normal readings for her. After days of being pricked for daily blood tests and her refusal to take keppra medicine, we were finally discharged after 13 days with keppra tablets. We have been home 2 weeks now. I was anxious being at home without having medical care on standby but she has became stronger by the day and i do not recognise any defecit in her development or behaviour. She is a miracle. We have a follow up appointment on 31 August. One thing i am really worried about is reaccurence. I have read that reoccurrence will not happen if the AVM has been fully removed but then read that it can recurre in pediatrics because they have not stopped growing. I am tormenting myself on a daily basis about it. I never want to go through such a traumatising experience ever again. She is my only biological child after having had a miscarriage in 2007.
Welcome, and thank you so much for sharing, amazing and we all love to hear the positives! You have been through a heck of an ordeal, and clearly your daughter is a fighter! Recurrence is not common with complete removal/obliteration as most cases are congenital. I would anticipate follow ups to check on things. I have an MRI next year which is three years since my last, first was one year, then another in two and now three.
Kids are amazingly resilient and energetic. I was 48 when mine showed so not a good comparison, but it took me a long time to get over the daily fatigue. I slept more than I had in years, she may be experiencing similar. Like I say, I’m not a great comparison! Thanks again for being here, and the best to you and her! John
Awww thank you John for sharing your thoughts with me. I am so sorry to learn this has happened to you too, but its good to know you are being monitored with yearly check ups. Its funny my Dr did a spin on it and she said…its funny if you spin it around your daughter is much safer now than before the AVM rupture… she will have regular check ups unlike before. I do hope you get the three year all clear. Please keep me posted as i would love to hear this.
It took me a while to make myself read your post - it’s very hard for me to hear a kid going through this
My son is right around your daughter’s age
But, thankfully it is me who was born with this & made it all the way to 39 before it ruptured
So so sorry to hear
I have no clue how I made it this far & apparently neither did my neurosurgeons
All of your concern - such as the possibility of it coming back & so on, is something we all live with. Unfortunately, she took the bullet at a young age. Hope for the best, you & everyone here is always in my thoughts.
And, I always had/have the attitude of I’d take two more of these if I have to - before I see my son go through one.
Try your best to be strong. Wish you both the best! It is possible to beat this
Mike, thank you so much for your message and kind words. I hope you are doing ok?
I know my message makes for a tough read with her being 9 when it happened. Its 4 weeks ago today that i was faced with the possibility of losing her. I have been diagnosed with PTSD as a result of it and have been signed off work for a while whilst i try to get my head around it. Not sure i ever will but i will try to be strong for her.
Best wishes to you also.
Shoot, and you ask me how I’m doing?! Thank you!
I’m real well actually, still have some odd days here & there - but, considering I’m doing excellent
I don’t have much to add tho - having your kid go through it - like I said, I’d take 2 more even if I don’t survive past the 1st before I’d let my son go through it - “if” I had a choice
“Try” to stay positive - you still need to b good, to help her ya kno:/
Totally wish you both the best!
Well, you’ve certainly been through the wringer, both of you! It’s fair to say that all of us who are patients struggle to think of how we would cope if it was our child, so know this: PTSD or no PTSD, you’re doing amazing. Honestly.
I’m going to say that I think the one thing I can offer you to help is that recovery is not set along a straight line (unfortunately). So if / when she has some difficult days – things feeling weird, dizziness or other things – don’t assume the worst: there’s a good chance it won’t be anything other than everything settling down. ALWAYS get anything that seems worrisome checked out but the reality is that we’ve all had some very odd, very disturbing sensations post op and it seems normal, not something to get overly panicked by.
It’s absolutely fantastic that you recognised what was going on and also for just getting in the car and beating the ambulance: exactly the right things to do. Well done.
I’m also encouraged to understand how the hospital dealt with her: teams on call etc. I live in a city that doesn’t have a neurosurgery practice, so it is interesting and helpful to understand how that working between hospitals goes on. Thank you.
It’s great to have you on board. We would love to know how you get on.
Very best wishes,
Awww thank you for your message Richard and your very kind words too. You are defo right about the challenges. My wee girl didn’t take very kindly to the keppra medicine and would have a 40 minute distressed period about taking it. Before we were discharged they tried her with keppra in tablet form which she swallowed straight away. She has been taking Keppra tablets for just over 2 weeks. 1 cut in half every 12 hours. Normally fine in doing so but tonight we went back to the distressed state like when she was taking the medicine. 1 hour later she swallowed the remaining half tablet. Its so hard seeing her so distressed about it. I wish i could take her place and for this to not have happened to her. Its honestly breaking my heart and i have tears streaming down my face as i write this. She has only mentioned about itchiness where her incision was made which is a good sign of healing and numbness on the top of the head. She also developed a little rash, which the pharmacy suggested could be caused by the keppra. I had this checked out by the doctors and they do not believe it to be caused by Keppra and have no concerns about it. When we got discharged i had no info other than the discharge form on what she could or couldnt do. Before this she was an extremely active, fit girl and being that way probably helped her fight through it. Its 4 weeks today since that dreadful day and shes back wanting to do everything she did before and im having to hold her back incase its detrimental to her recovery as she is supposed to take it easy for 4/6 weeks. I may call the neurologist tomorrow and ask them a few questions. We have two weeks left of the school holidays so it would be good to know things she can and cant do.
I’m sorry my message must sound quite depressing.
I hope you are ok Richard and you are in good hands too?
It’d be 20x worse to see my son go through what I have - then some
Your post made me tear up a bit - not gonna lie
Richard definitely has a better way with his words than I.
But, only thing I can add - I suppose is that today’s neuro medicine is at its peak - my dAVF could have not been “cured” the way it has 5 years ago. Neuro microsurgery is at its peak also - After thoroughly reading your posts, to me - it sounds like she’s doing very well.
I lost all hope when I lost all my motor skills. It just got worse from there - but, slightly over two years later I’m doing 1,000x better than I expected at that point.
for u both
I am so pleased Mike that you have come along way with your recovery. Its so good to hear.
I have read alot of the stories on here and i am amazed, especially by the ones that had them back in the earlier days without todays advanced treatments and are stil going strong. Goes to show you should never give up hope.
Sarah (MIllies mum)
I’m so sorry that you’re daughter went through this at such a young age. I see that you’re located in the UK. In the US we have something called a 504 plan, which is put into place by the local school district to spell out a student’s needs as they relate to a medical condition. Whether there is something similar or not, I would work out a plan with the neurologist and her school staff (nurse hopefully) as to warning signs, need for rest, etc.
You may or may not be aware that while Keppra is a very safe and effective medication, it can cause some issues with mood, commonly called “kepprage” in the epilepsy community. There is a supplement that can be taken that can limit this, but I can’t remember off the top of my head what it was.
I’m really glad that you found this community for support, and I’m also so glad to hear that you recognize the trauma that you’ve been through. Dealing with it earlier can only have a positive impact on you.
In case you’re wondering, my experience is NOT with an AVM, but with my then 15 year old daughter being diagnosed with epilepsy. She is still on meds even though she is over 4 years seizure free. We continue the meds because she is in college and full of poor decision making.
Sharon from ModSupport
I’m very well thank you. Like Mike, I had a dural AV fistula (basically a single shunt) of blood that was discharging into the veins in the back of my head. Unlike Mike, I discovered it before it bled (I could actually hear the whoosh, whoosh of the blood pumping into the veins that pass by my ears, like the washing machine on pump-out, 24×7 ) and I was fortunate to get it glued up before it did anything untoward.
What I’d say from my experience is that I felt pretty serviceable two or three weeks post embolisation but overdoing the PE stuff a few weeks later felt like an error. Since mine had been pressurising my veins in all directions pre surgery, the immediate blocking off of the join made my head feel quite weird for a long time. Even though the pressures were all corrected, I still felt quite weird: I assume mine had been developing for quite some time and suddenly switching the pressures round was just odd. A lot safer than it had been but very odd. So she should definitely feel at ease feeling quite strange for a while. Having to do the Keppra won’t help with that at all and she should try to be patient with herself.
I had my embolisation in April 2017. I had a repeat angiogram in late May or early June and given the all clear but I felt anything but all clear. I got gradually better over the ensuing months. I had a couple of days in the October when I suddenly went dizzy again and I returned to the GP. He referred me back to hospital and it took until March 2018 to see the neuro again. He begrudgingly agreed to an MRI and also scheduled a further angiogram. To cut a long story short, all was ok but it took 18 months to get that ok and I’d say that even then, I still struggled to believe it. I would say it took me two years to feel “normal”.
I still have very rare moments when my head feels a bit strange but I take this as just par for the course unless anything properly worrisome happened. So, yes, I’m absolutely fine, thank you.
Recovery from this stuff takes much, much longer than perhaps is fair but there are good outcomes to be had and it is a “good”(?!) exercise in patience.
Lots of love to both of you,
Thank you Sharon for your message. Its very much appreciated.
Our physio therapist has sent an email to my daughters primary school with information to aid her return. I’ve not spoken over the phone to the head teacher, but i will to see what they will have in place for her.
Its very good of the schools in the US having the codes to assist with this.
I hope you dont mind me asking, but how does your daughter take keppra? Is it by medicine form or tablet form?.
My daughter tried the medicine but hated the taste of it so went on to take the tablets instead, but now shes experiencing fear of the tablet getting stuck in her throat so gets quite distressed about tablet time.
I have found she is abit more iritible since taking the keppra, but wasnt sure if side effect of injury rather than the keppra. We have a follow up appointment on 31 August so will hopefully hear abit more then.
Best wishes to you and your daughter.
Richard thank you for your supportive messages. I am so pleased you are doing well.
I spoke with the neurologist today over the phone and i have been told that reaccurence is very rare when the AVM has been surgically removed. She said follow up on 31 August will just be to see how she is doing but we will likely get an appointment for an MRI for a later date.
My Millie wants to run again before she can walk. As she feels good, she wants to get on with doing all the activities she did before but like you say, it could be too much too soon and taking it abit easier is the best option. Although i dont think she would agree. ha ha.
Thanks again for being there with kind words and advice.
I forgot to say that the repeat angiogram was to see whether the embolisation had got the naughty flows 100%. Embolisation is often undertaken in more than one approach and while the consultant was convinced post op that he’d got the lot in the first go, he wanted the second one to see for sure.
Since I was still having weird effects, including the several days of significant dizziness in October, I was concerned that all was not well (and I’d read an unhelpful article online) and so was pressing for the subsequent checks. However, the conclusion was that there was nothing to see and it was simply a matter of getting used to the new pressures in the new places. What amazes me is that it should take so long to feel ok.
welcome to the community. I am so sorry your daughter and family had to go through this ordeal. I am also very glad that your daughter is doing well. I just wanted to reach out and let you know from someone who just recently had a surgical resection, 2 months ago, and I am almost done with my recovery. Mine was located in right posterior Cerebellum, found it in a checkup at 44 years. I have done extensive physical therapy ever since (5 times a week with appointment) given that I had a lot of trouble with my balance and equilibrium. With time and proper therapy your daughter should recover.
If you have any questions regarding surgery or recovery I am at your service.
All the best to your Daughter and Family.
Francisco, thank you so much for your message of support. I am so sorry to learn that you experienced this too.
I am also happy to learn you have come along way with your recovery.
My daugter seems to have come away practically unscathed. I do think someone was looking over her (guadian angel) She had a significant bleed in her right frontal lobe, which started routing down the ventricular.
Its been 4 weeks since she had a complete resection via cranotomy and she is doing amazing. Only defecit seems to be slight weekness in her left foot when going up and down stairs. Other than that she seems like her old self.
My husband is a hospital porter at the initial hospital we rushed her too and he had colleagues saying to him how very sorry they were. They were saying it like she was not going to make it. Me and her dad, got told twice that she may not make it so to be where she is now is a complete miracle and blessing at the same time.
This forum has bought me a lot of comfort over recent days. Its so great to have contact with those that have unfortunately experienced it but ultimately beat it.
Best wishes to you on your continued recovery.
Thank you so much for sharing your amazing story. I am so happy to hear your daughter is doing so well - that is such fantastic, happy news! Our journey was very scary, but not nearly as sudden and traumatic. I hope the scary part is mostly behind you now and you are able to look forward and focus on her recovery (and yours!). Try not to worry about anything else. You have come so far, facing terrible odds. From a near atheist, I would say you have been blessed.
Awww wow thank you so much for your mesaage. I indeed do think we have been extremely blessed and i will be eternally grateful for the rest of my life.
Please if you dont mind telling me your story about your daughter with an AVM?
I haven’t been here in quite some time, but your daughter’s story caught my attention. I am an AVM survivor myself and had a very similar experience when it ruptured. Mine was removed and I have since bounced back with very few deficits. Everyone around me kind of treat me like glass and I understand it completely. I’m a mom as well. Do your due diligence and stay on top of her appointments and care, but do not live in fear. God will be with her. Have faith. There is still an amazing purpose she is meant to fulfill if she came through that experience. It can be easier said than done, but I know my family worried more about me than I did for myself & maybe still do. I have a peace now that I cannot explain, but I know I will be okay because there are more things God wants me to do.
I will be praying for your family and for peace of mind with positive medical follow ups to come!