Prevent hemorrhage until the Gamma Knife takes effect

Hi All,

My Daughter is 7 years old and she was diagnosed with AVM last year when she had the brain hemorrhage. AVM is at the area of the brain which controls the motor skills. When she had the hemorrhage last year, only eye and eye lid movements were impacted which was recovered in few months. As per the doctors, there is no direct surgery can be done because of the area and her young age. The only option that was suggested was Gamma Knife surgery. Gamma Knife surgery was conducted 9 months ago and my daughter didn’t have any issues until last week when the brain hemorrhage happened again. This has happened at the same location as before. After the CT scan, doctors said that there is nothing much can be done now but to wait until another two years for Gamma Knife to take effect. Doctors had previously informed us that within those 3 years window while to GN to take effect, there is always a risk of hemorrhage which unfortunately happened again. This time, the bleeding was much more than the last time so her body is paralyzed on the left side and she is unable to walk. Doctors have asked us to wait until the she regains her abilities naturally since there is no medicines or anything else can be done.

I am reaching out here desperately to check if there are any medicines (Herbal/Ayurveda/ Homeopathy or any traditional) can help her to get back to normal life quickly and also prevent any future attacks. Is there any traditional medication to cure AVMs as well?

Any suggestions would be really helpful.

1 Like

@singking

Welcome to avmsurvivors. It’s really good to meet you, though we are all disappointed to belong to this rather exclusive club. I’m really sorry that she is going through this not once but twice!

As your doctors have indicated, the main treatment is to wait for the gamma knife surgery to do its work and it does take a long time. When it isn’t safe to do other interventions, the only thing is to wait for the gamma knife to work.

Meanwhile, the things that might help are to try to avoid anything that might put her blood pressure up. So, as an adult, I was advised not to smoke or drink alcohol, to avoid coffee, chocolate or caffeine. It is also advised to avoid straining, so lifting heavy loads or anything where you’d be straining. This should help to avoid some future bleeds.

Another thing I’ve read people recommending on here, especially in terms of recovery from a bleed (apart from doing the physiotherapy and other recovery work) is good hydration: the brain struggles to recover so well if poorly oxygenated or poorly hydrated, so doing normal good things to stay nicely hydrated and healthy will help.

I’m sure people will have other recommendations for what they feel help them, over and above the medical interventions.

Lots of love to you all,

Richard

1 Like

Hi @singking! I am so sorry to hear what you and your child are going through. I also know what it can be like to “watch and wait” for the lives of those you love. I offer no medical advice as I’m no doctor but I will say I’m glad you found this site. I’m also glad you are actively and responsibly working toward a resolution for your loved one. I will mention, a number of years ago doctors conducted a study called the ARUBA study that checked for the chances and condition of treating vs not treating an AVM. The doctors had to actually stop the study before it finished because of so many patients AVM rupturing. I tell you this not to worry you but encourage you that actively and persistently urging your treatment team to help your child is the right thing! Patient advocacy is so crucial! Also, as a mama bear as my wife so amazingly could attest, she spoke for me when I couldn’t and was that steadfast anchor when it looked like from my perspective, the ship was sinking! So hopefully just a little bit of encouragement and a whole lot of thoughts and prayers will get your child through this. Our thoughts and prayers are with you. Blessings as you continue!

Hi,

I’m so sorry you and your daughter are going through through this.

I cannot offer any medical advice either, however, I have been a watch and see situation for about 16 years and recently just waiting to see whether this will be the situation going forward - in similar situation to your daughter. My avm is also in the motor cortex and surgery will result in definite complete left sided weakness.

After finding out about the changes, I have been trying out a Mediterranean style diet as I read it reduces chances of strokes and heart attacks. It is mainly based around plant based foods, also reducing salt, refined sugar.

Honestly I am taking a stab in the dark here but I am willing to make any changes to try reduce my risk and thought I would share.

I have noticed a reduction in my migraine attacks since I’ve started this diet but it has only been about 2 months so may be too early to honestly say.

1 Like

Hi, very sorry to hear about your/your daughter’s situation

Children are much different when it comes to this “stuff” - GK being an only option is a total bummer due to the length of time it takes for it to take effect

What can you/her do? Like mentioned, keep her blood pressure in as much control as possible - this is very difficult to even say when it comes to a 7 year old. But, high BP and an active AVM are a bad combo.

Hi SingKing, I’m so sorry to read about hour daughter. It’s bad enough happening to yourself as an adult but it must be horrid to have your child have an AVM.

Like others here I’m not a doctor, but having had one haemorrhage three years ago (occipital/parietal close to motor cortex) and also undergone gamma knife 2.5 years ago I have asked my neurosurgeon many times about lifestyle and how to minimise risk of further bleeding. Here’s what I’ve been told;

  • remain hydrated. Not just for general health benefits but because I was found to be dehydrated when my AVM ruptured and they believe this was contributory in that I probably had a clot which blocked the draining vein causing my bleed. So I make sure I don’t become dehydrated now. Initially I was probably going to the other extreme so avoid that too - just sensible, regular / normal hydration. All neuros I’ve spoken to have said this is a good thing.

  • maintain low blood pressure. Mainly by avoiding stress. All situations are different and I’ve had varying advice on exercise but in general the message for me has been that exercise is fine, and actually in moderation contributes to lower background BP, but to listen to my body and avoid really high intensity stuff or heavy lifting etc. I run, do workouts just like I used to and feel this is ok for me. Having had a second bleed your medical advice may differ so I would talk to your daughter’s doctor about this. My neurosurgeon said that with aneurysms they usually rupture under stress (high BP) but that AVMs can bleed lying on the sofa, so the mechanisms and risks do differ. Mine did rupture while running but as I said I was very dehydrated and I’ve been running for many years with no incidents previously.

  • there are suggestions in studies that gamma knife MAY offer some level of early protection from further bleeding even before the AVM is fully obliterated. I read a very recent ‘study of studies’ that appears to add weight to earlier studies which first observed this phenomenon. If your daughter had a second bleed only soon after her GK, it’s possible that she will start to gain some protection over the coming months/years. I really hope that is the case.

    I hope you don’t mind me asking, but what grade is her AVM, was it a single fraction treatment and did they quote you chances of success? And was she doing anything particular when she experienced her bleeds?

    All the very best to you and your daughter.
    Jonny

I guess you can’t embolize either l?