My daughter spent the last 9 months in Asia on her own, teaching English. She has only been back for a month this week. She was diagnosed a week ago today with AVM in her back left part of her brain. We went to family doctor for her migraines that were really bad in Vietnam. We contributed it to the pollution over there. He gave her an MRI and then made us go to St Luke’s in Milwaukee for a check up. Sent us to the ER there. Yesterday she told me that she knew that she was going to die soon. She said this in the car on our way home from a 2 hour eye doctor appointment the neurologist recommended she have. It was so hard not to start bawling. I told her that she is being silly and should not worry or say things like that.
We meet with the neurologist on Tuesday for the first time. I’m having a rough time not crying in front of her and have been riddled with higher anxiety than Normal. My husband doesn’t seem to understand how serious this is and it’s frustrating. All I have been doing is praying.
It’s so odd, while she was away, I was worried that something would happen to me with my health. I have attacks of arrhythmia once in awhile. Stress sets them off. But it’s all fallen on her health now. I’ve never been more afraid for her and wish it wasn’t true. Her friends are so worried she is going to die. She is worried that she will die and I’m so worried also. I hope I can learn from this group. And I would like to learn fast so we ask the right questions on Tuesday. I don’t want to be a deer in the headlights and do nothing. Prayers to all in this group!! I’m going to need your knowledge and prayers. Thanks for the add!
Bottleblonde
I know exactly how she feels. To get a diagnosis like this and not to know whether it’s a little tiny thing in one corner of your brain or some great sea monster that’s taken over most of the space is what worried me (by the way, they don’t get to sea monster size, so don’t think about that… but it’s absolutely natural to worry about that sort of thing).
The honest answer is that the docs need to have a look at it and can then tell you all what it means. And it varies widely from “just keep an eye on it for now” to literally injecting a bit of glue in the right spot to zapping it with radiation from the outside or that more scary thing of taking the lid off and rummaging around.
So… I think the best thing to do is not to worry about it until you know if it’s worth worrying about. If either of you can put off the worry, do. Definitely easier said than done but worth keeping busy and focussing on something else.
What I can also tell you is that there are a whole bunch of people here who’ve had each of the treatments, including a craniotomy, and are doing just fine. It definitely doesn’t just mean the d word. The great thing is that we live in an age when you can do something about these things and the outcomes can be very very good. Sometimes an AVM is in a more dangerous place and is best left alone but again, you need the docs to have a look and see what is the case here.
Sensible things to do are:
- Keep the blood pressure in a normal range. i.e. no shifting heavy weights or straining of any kind. Cut out coffee, cigarettes/smoking, chocolate, alcohol. If there is a real risk of a bleed (and the actual likelihood varies completely from case to case) then taking the pressure off is a good defence.
- If she has any sudden or severe symptoms, treat them as ER indicators. However, some people have AVMs and associated symptoms for years before anything untoward happens, so don’t be surprised if the hospital are quite cool about it all.
- Ask us anything you want. That’s what we are here for.
OK? It’s great to have you here. We’re all in this together and we’ve been through the things you’re going through. We can stand together.
Very best wishes
Richard
Thanks Richard. Her only vice to stop would be the alcohol. But she has stopped drinking completely as of Saturday. Sunday she started taking some pills that are anti seizure twice a day. I have her schedule now and looks like an MRI this Thursday, a consultation appointment with an eye specialist that is part of her neurologist team next week. Pre surgery exam with the family Dr. following week. Embolization (mapping of the brain) and surgery the day after that, the 29th. Surgery will include them removing part of her skull and placing titanium where they took out the skull bone. They were talking about coils and possible burning things off. I’m not sure if that is called a cranial Something or not. I don’t know much more as the consultation alone was a lot to absorb.
Hello,
I am also an AVM survivor, I was diagnosed last year with an AVM in the left frontal part of my brain, I had similar age to your daughter, 26 years old. I can advice you to stay strong, and take it serious, I know it is scary to hear a diagnose like this, I have not even heard about this until I was diagnosed, now I know there are lots of people in this world who have AVMs. It can be treated and once you know about it and it produces symptoms it is very important to treat it. You need to do some research and learn about it in order to be able to choose the best tratment option. Basically there are 3 treatment possibilities or the combination of them:
- Microsurgical resection: means opening the skull and practically cutting off the arterio-venous malformation. It is indicated in case of very small AVMs, located in the surface (it is important to know that AVMs are measured by the Spetzler Martin scale), Spetzler Martin Grade I or II. It is a very invasive and dangerous procedure. In my country the neurosurgeon wanted to do microsurgical resection in my case (because the health system is very poor and they were not able to offer me proper treatment) but I asked second and third opinions from more developed countries in Europe and I received the same opinion, neither of these surgeons was recommending this procedure, they said that it is very invasive and dangerous, once they start to cut they cannot be sure if they will be able to control the bleeding or not. There will be a huge risk of neurological deficits.
- Gamma Knife: this treatment is based on radiation, which aims to shrink the arteries of the malformation. You can ask around on this site, there are many people who have experience in this treatment. Those neurosurgeons I have asked told me that I am too young to be exposed to that kind of radiation, it is not sure that it will work, it will take 6 months to produce its effect and once is applied the result will be irreversible, if the patient will start to experience side effects, deficits that cannot be stopped.
- Endovascular embolization: is a minimally invasive surgical technique, the radiosurgeon will reach the brain through the femoral artery by inserting a catheter, then he will close the arteries of the AVM with a special glue. This treatment method was recommended for me, because it is less invasive, it has the lowest risk of hemorrhage, it is a final solution, it lasts for a lifetime once the malformation is totally closed. I just finished with my treatment, I had 3 interventions, each of them went very good, there were no complications, nor bleeding at all
In conclusion I can tell you that every case is different, I strongly suggest you to ask for several opinions, there are lots of people on this site who can give you the names of the best neurosurgeons from your country. Take your time to do some research, make your notes, write down your questions about anything you want to know and ask them from each neurosurgeon you will talk to. Do not hurry and do not take a decision based on a single opinion, you need to find the best surgeon for your daughter, someone who can trust. It is a very important decision having effect for a lifetime.
I hope this was helpful if you have further questions you can ask me about anything
Hi
It sounds like she is having a combination of embolization and craniotomy. The angiogram is to map out the vessels (so might be what you mean) the embolization is with glue or coils to block off parts of the AVM as a precursor in this case to the craniotomy. As Bea says an embolization can be a full & final solution but it is also often used as a way of reducing any blood loss during a craniotomy. In your daughter’s case I’m reading that the doc wants to do a craniotomy and is using the embolization and some cauterisation (burning off) to control bleeding.
Following the operation, they’ll do a cranioplasty which is to replace the removed bone with a plate. If the gap created by the craniotomy is big or in a place where it would be dangerous to leave it unprotected, a cranioplasty is done. I also anticipate that she’ll be on an anti-convulsant like keppra post operation to make sure she doesn’t have any seizures. The craniotomy is obviously a major operation and the keppra will kinda calm things down (is how I understand it).
It also sounds like you’re on quite a schedule! I’m sure it’s all going to happen pretty quickly for you now, which is a good thing, I guess. It stops the agony of waiting but reduces the time to get your head round it!
Big, big stuff but important; and you’re among friends with the same experience here. Let us know how you get on at each stage and we’ll be with you all the way.
Very best wishes
Richard