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AVM Survivors Network

Brainstem AVM


#1

Hi all,

I’m new to this site. I have been reading through discussions for months. I was born with an AVM on my brainstem. It hasn’t cause me any pain until 7 months ago and since then I have had pain on the back right side of my head everyday. I’m nervous because the neurosurgeon I saw said that many things could be going on and wants me to take an angiogram test to rule things out. I’m so nervous and depressed because of all this. I don’t know how to deal with all this and I’m afraid something bad is going on. Any advice? What can be done with a brainstem AVM?


Infoneed
#2

Hello,

I was diagnosed with an AVM also 8 months ago and I was scared, until than I didn’t even heard about such thing. But after doing some research and consulting several neurosurgeons (even from foreign countries) I understood what does it mean and what are the possible treatment methods. Every case is unique but there are possibilities, do not panic, it is very important to do all the investigations that are necessary to establish the most appropriate treatment way for your case. I would advise you to ask for several opinions, find the best neurosurgeons, interventional radiologists, they will give you solutions, do not hesitate to ask, stay strong and positive :slight_smile:


#3

Welcome to the site! It is a really good place for questions like yours, people have been through a lot. It’s great you’ve joined in, hopefully some of the discussions you’ve been reading have helped. My AVM is in the left temporal, and had gamma knife just over a year ago. I have had two angios, one I have no recollection of s I was in the hospital post bleed. The second I have full recollection of. I will have one more at least when my neurosurgeon believes it may be obliterated. I didn’t find the angio bad at all, some small risk, but its explained to me that in resect to these it is the diagnostic test. I have mine on a disc, I can see every vessel and the complete snarl. I’ve had three MRIs and four CT scans and they show little in comparison to what the angio shows.

I’m one of those people who ask lots of questions, but did have complete faith in my neuro team. I would personally want to do everything possible to see what is going on. Once this is established I would seek a variety if opinions on what, if anything, to do.

Again, it’s great you’re here with us. Take Care, John


#4

Thank you Bea and John for the reply. I try and ask questions but sometimes freeze up and forget what to ask when the doctor is talking. I try and have faith in my neurosurgeon but I’m confused constantly being told that there is nothing that could be done. The only way they would treat it is if something happened and they had no choice. It’s scary to think the only way I’ll get help is if I bleed.


#5

Sal,

The reasons for this are that by doing surgery, the risks are so high, that you stand a good chance of coming off worse by the surgery. However, the impact of a bleed can vary. If you are actually having a bleed, then the risks of doing nothing become worse than doing something, so that’s what persuades the doctors to act.

Unfortunately, it sounds like your best option is to leave well alone. But if you can get diverse opinions on what intervention (with low enough risk) can be done, then it may be that there is an option for you.

Look up the Dr I found in your other thread and see if there is any difference in opinion.

You can also search for “brainstem” using the grey magnifying glass icon, top right.

Hope this helps,

Richard


#6

Definitely, thank you for the suggestions. It’s hard to think that I should just leave it alone until something potentially happens. I have read through many discussions on this website and have seen people with similar situations to mine have a procedure done. I don’t know I’m just really nervous. I have a newborn and my biggest concern is not watching her grow up.


#7

Well, if you’ve already found examples of other people having treatment, that is definitely encouraging.

I think you definitely need a further opinion or two, not to limit yourself to the doctor you have, if their only advice is to leave it. I can see no harm in others’ opinions.

Some institutions will given a second opinion by email, too, if that is of value. Mayo and Barrows, I think.

Richard


#8

I also had a brain stem AVM mine actually ruptured and I had a stroke.

Generally the brainstem ones are in operable due to the deep and eloquent area of the brain that they are in however they can do treatment via radiation using gamma knife or cyber knife.

angiogram is a good idea to get a better read on what the size and scope of the AVM truly is as depending on size that level of detail is harder to gain via MRI or MRA .


#9

Hello Sal613,

My AVM is on my brain stem also. I had electrical shocks from the top of my head across my right eye, and headaches. I also had it since birth according to the doctors, but I didn’t have issues until my late 40s. My issues were caused because my AVM wraps around my 5th nerve near the brain stem / cerebellum.

After meeting with about 8 various physicians, we decided Gamma Knife surgery would be best for me. I had that done December 2016. I just met with my neuro interventional radiologist yesterday for a 1 year MRI follow up. He stated that the vessels are shrinking, which is good news and recommended I wait one year for the next MRI.

I would recommend an angiogram. An MRI is not enough. Once you have more information, you’ll be able to decide what is the right approach for you moving forward.

I wish you well, Michael.


#10

I also had an AVM on my brainstem that ruptured an I had a stroke. I think they are right you should have an angiogram to see what’s going on and you shoud not wait to see what happens. I know it’s scary but it needs to be taken care of.


#11

Hi I had an AVM they said I was born with. I was lifting weights at a gym when I got a severe headache. My blood pressure was fine , I thought I was coming down with something. My Dr prescribed muscle relaxants. I couldn’t sleep my headache was so bad. After 4 or 5 days my Dr said to go to the ER. That’s when it was found. They took me by ambulance to a hospital where they had a brain surgeon. He stopped the bleed, then I had formed a clot from the bleed and I had a stroke. The blood clot went to the cerebellum. Part of the cerebellum died. I lost my hearing in my right ear, part of my esophagus is paralyzed so I can’t swallow or eat, I have trouble walking due to balance. I can’t write with my dominate hand. My right hand. I can drive. I write the best I can with the left hand. I have a permanent prism in the right eye.


#12

Yes, I think I’m definitely going to have an angiogram. i have an appointment with my neurosurgeon this Tuesday. I hope you are recovering well after your rupture. Thank you so much for replying to my question.


#13

I used to lift weight but when I started to experience head pain I stopped. My head pain hasn’t been too sever but it’s a constant pain. Thank you for sharing your experience.


#14

Yes I definitely don’t think I should wait. My doctor in the beginning told me to wait if the pain was manageable, which I think isn’t a great idea. Thats what led me to get a second opinion.


#15

I’m glad you will go ahead with the angiogram. We had no idea my daughter had her AVM until her rupture. It was on her cerebellum but the massive bleed compressed her brain stem and within minutes she was unconscious and couldn’t breathe. We’re so lucky we were in the city and help could come fast. Her neurosurgeon said the angiogram (which she had 6 weeks post surgery) is the “gold standard” when it comes to seeing what’s happening with blood vessels. Hopefully after yours they’ll have a good treatment plan to recommend. A rupture can be really devastating as I’m sure you know. Miraculously my daughter is recovering. It’s been a year and 3 days since the hellish day of her bleed. Her recovery has been incredibly slow. She had to get a tracheostomy to help her breathe for 3 months. She didn’t speak for 4.5 months. Had a feeding tube for over 7 months. I don’t want to scare you more but try to look at your experience as glass half full. You have the chance to treat the bomb in your head before it blows. No less scary than our situation, but different. Good luck!


#16

With all due respect, it is horrible to walk around thinking you have a bomb inside your head just waiting to explode. Read about the ARUBA study. Some AVM’s are best left untreated. Not all AVM’s rupture. No two are the same. Doctors are not the same either. Some do good surgery. Unfortunately some make matters worse. Search for a neurosurgeon who has done many AVM surgeries. Most are in teaching hospitals. In the meantime don’t lose sight on enjoying your days. Don’t live in fear. No one is immortal. No one really has the assurance of another day. Keep calm and carry on.


#17

Thanks Lea. I completely agree. Its impossible to compare one AVM with another because they are all so different. I have an AVM of the Cerebellum and have known about it for over 20 years. I have always been advised against treatment though as there is a huge risk of deficit. I think treatment, although right for some people, isn’t right for all by any means. My AVM has caused very few problems over the years so I have accepted that I’m best off living with it.