Hello all I’m new here and i really liked this forum and I’ve read many posts here the past few months and I’ve decided that i wanted to share my story and know your opinions about it.
Actually I dont know where do i start from my son Ali did had his small avm raptured on the first week of June 2019 long story short the craniotomy was done on the 24 of June and a follow up CT angio was done 3 days after the surgery and everything was normal thank god and we were released after 5 days from the surgery and he was perfect … After that on November we did an MRI/MRA angio as a follow-up and everything was normal and then i did look up the internet and discover that the recurrence thing is may possible ( god forbid ) and that it has a higher chance in childrens than adults and exactly in that moment i went crazy and talked to the doctor like a million times and he keeps telling me that its nothing and since he works on this field the past 20 years doing surgeries at least 3 patients a year he has never faced one and the chances are extremely low because my son’s avm is a localized one and he removed it all …
Anyway my doubts started when my boy started having headaches since the starting of this year ( he had them 5 times the past 40 days … Every week or two once ) i know its not that often but it got me worried since he didn’t had any headaches before and the good thing that it wont last longer than 2 to 3 hours and we dont use any medicine because he acts ok and moves and eat normal just saying that his head hurts ( mostly at the top of the head but sometimes on the place of the surgery ) even tho the surgery was at the back of the head ) and when i talked to his doctor he told me that its normal and its not related to the surgery … But im still worried because he never had headaches the first 6 months after surgery so is it really normal ? And have anyone had a similar situation ?
Btw the doctor did asked for an angiogram (DSA) on the next june ( after 1 year of the surgery ) but he claims that its because of me worrying … But he is 100% sure that its no need.
P.S : sorry for my horrible English cuz im not a native speaker.
So to sum up the whole story my question is … Is it normal to have headaches after 6 months of headache free since the op or its may be cuz of a new recurrence ?? I know it may sound crazy but please tell me what do you think?
Hey! Welcome to AVM survivors! It’s great that you’ve been reading for some time but have decided to join and ask your own questions.
I am sure that it is ten times more difficult to be the parent of an AVM patient than to be the patient themselves, even more difficult when your son is so young that it is hard to quantify how uncomfortable he is.
I’m assuming the surgery you are describing was a craniotomy (open surgery of the head) rather than an embolisation (injection of glue or coils to block the AVM intravenously) or radiotherapy. I’ve had an embolisation, so my experience is of that only. My experience, even with a seemingly less disturbing operation such as embolisation is that I had a sudden dizzy spell at about six months and that worried me enough to do much the same as you are doing. It took me a further 6-12 months to get seen by my neurosurgeon and for some MRIs and an angiogram to be done, during which time sometimes I felt poorly and sometimes I felt pretty ok. My doctor’s conclusion was that there was nothing apparent in my scans and I was just needing to get used to the way my head feels post-operation.
So… I think it is a good thing that your surgeon says he will have another look a year after the surgery. But I also think that recovery from this sort of thing is very lengthy and not in a straight line. I think it is possible that Ali is still recovering.
It is good to get that further look in some months time.
If Ali has any significant event meanwhile, obviously you should treat it with the suspicion and urgency that such a thing would demand.
By the way, I think your English is pretty perfect!
Yes i meant craniotomy i will edit the post so it would be easier for others to know.
I just hope that everything is normal but the thing is whenever he tells me that he has headache i go coco and start panicking i will try my best keep calm next time.
I’d say it’s normal after having surgery. I seemed fine at first but I would have some headaches around where my surgeries were done. They wouldn’t last long and I think some of the reason was because of me growing at the time to. I was just 11 years old when I had my last surgery.
Hello brother… Yeah i think that too but still since he is a small child it makes me worried every time it happens and remembering the whole what we did been through before and makes me worried about if there is a recurrence of the avm going on ;/.
Any thanks alot for comforting words
AVM regrowth is most likely in the teenage years when there are hormonal changes. That being said it is very rare. Just wanted to address that as you are so concerned.
It is sensible that he is going to be re-examined but as he has had surgery his brain is most likely still healing. It takes time and it is not uncommon for a side-effect to appear around the six month mark. Should the headaches worsen or the situation change in any way then contact his specialist or if extremely worried, take him to emergency.
It’s impossible not to worry but do your best to calm down as the stress will take it’s toll on you and your son will pick up on it too. Take some deep breathes and hang in there. You’ve got this.
Thanks dear but the thing is that there was no headache at all until 2/1/2020 when it happened all of sudden (( hes surgery was on the 6/24/2019 )) so thats what got me worried and the headache are not very strong and it happends once in 1 or 2 weeks so is it some part or the healing process ?? Thats what i want to know
If the headaches were severe I would be pushing for further investigation now, however mild headaches six months after surgery can certainly be part of the healing process, the body adjusting to changes in the brain or even just stress. A scan in a few months is certainly sensible as the brain does need time to heal before an angiogram should be done so as to limit any risk to your son.
Just to reiterate though, if at any point the headaches worsen or you see other symptoms that are concerning to you then please consult your specialist or take your son to the hospital. You wouldn’t be wasting anyone’s time.
You have been through an extremely frightening and difficult experience and are naturally nervous. It’s going to take time for you to recover as well.
You are right:) But tell this to my brain … I keep revisiting the same nightmare ( the day when it happens) so i cant help overreacting when anything unusual happens.
Thankfully few understand the fear, anxiety and stress of dealing with an AVM and it hits you pretty hard!
It will be ok and you will too Omairi It’s all so recent at this point. You will both heal though it will always be a part of you and you will both get back on with your lives.
Actually I’m not that strong … Because since my baby was diagnosed with the AVM all my life was on hold until now … I do feel depressed every once in a while … Im having a really horrible time dealing with the whole situation … My wife is way wayy wayyy stronger than me. But i will try to be stronger
Your life HAD to go on hold while you dealt with this and some depression is natural but it will ease. If it doesn’t then seek help. It isn’t just your daughter who suffered but all of you. And I know that for men it can be hard in a different way. Men often feel that it is their responsibility to be able to solve the problems of their family and to protect them. This wasn’t something you yourself could solve. As to protect, you were there for and with your family through this time and will be there for them in the future. You did what you could and I hope you know that.
Well it’s a long story but I’ll try to make it quick and easy. My AVM ruptured when I was 10 years old. Luckily was at home with the family when it happened. Was air lifted to the hospital and had emergency surgery to stop the bleeding. After they stopped the bleeding they told me and my family they would need to wait for the swelling to go down before the next surgery to remove the blood clot. So after 2 months of therapy and a lot of MRI scans I then had my 2nd surgery. After that was sent home but kept having small seizures so was then taken to St. Louis children’s hospital and had more tests done. They found 3 very small blood clots in different spots from the first burst. Doctors said it was like a bomb went of in my head from the first rupture. So ended up with 3 more surgeries. After that was sent home and went a year without a seizure so they then tried to take me of my meds. But I ended up having a big seizure. Doctors figured it’s because I have some of the brain gone that the brain cells need the medication to calm a direct the cells. Have been on the same pills ever since have gone over 10 years without having a seizure and I do drive a car to work.
Wow it looks like you’ve been in a lot … Great that everything went great at the last god bless you my friend… But my question is how come they didn’t find the 3 blood clots and only found them after the 2 surgery ? Do they appeared after ?
Well it was the difference in hospitals. St.Louis had a lot more advanced equipment. The way they found the issue with my seizures was by doing an EEG scan. But this wasn’t the standard scan. They drilled through my head and attached the wires to the brain. Then took some medication away and forced me to have a big seizure. It wasn’t fun but it found the problem and location of where the damage was.
It’s all so recent at this point. You will both heal though it will always be a part of you and you will both get back on with your lives.