Has anyone had experience dealing with this.
My AVM was in the brain stem/cerebellum area. When it ruptured, I had imbalance/vertigo/nausea. My neurologist said that although brain stem controls core functions, it is very resilient and recovers very well from injury. What’s your situation?
Hello Ben,
My initial symptoms seemed very similar too yours.
In short, over a year ago I experienced what I now know to be a micro AVM in the brain stem. Thankfully(?), this occurred in my sleep. Now, one year later, following a couple of MRIs and an angiogram, it was diagnosed in Oct/Nov 2008. Apparently this AVM is very small and deep. The tried to embolize it and found it much too small and too hard to get at to inject anything with confidence (during the embolization). They did not want to inject anything, as they have little control once the ‘glue’ is injected and based on the nature of my AVM, it was felt to be much too ricky.
The other option is to use radiation(!?), which I believe is not as immediate, but also very effective over time.
I am still learning about all this. But I am no less terrified about the whole process of dealing with an AVM.
Thanks for inquiring. I hope all is well with you.
Jim
I did gamma knife. It took 18 months total, but my AVM is gone. There were no real side effects for me, just a lot of waiting/anxiety about a re-bleed. I have a lot of updates on my blog about these last two years.
Gamma-knife was pretty painless. I did it on Friday and was back to school on Monday.
Thanks for the response Ben.
I feel very fortunate in that I live a relatively normal life. I have slight double vision in the left eye and a little numbness in the right arm, but I can live with all that. It’s the anxiety and the unknown which is what I struggle with the most.
How did you deal with your anxieties?
I saw a therapist, but she was (honestly) useless.
In the end, I turned to family, friends, my journal, and prayer that this time bomb wouldn’t go off. It didn’t. I was fine. But those were tough times.
Ben, did you change the way you live to increase the chances that the AVM would not bleed again, or is it true that there is little you can do about whether or not it will bleed again.
I just assumed that everything would be okay, but always knew where the nearest emergency room was. I lived as a student in China for three months, but had my medical information on a card in Chinese characters with me at all times.
So I took precautions (exercise less, be prepared), but didn’t stop doing things I enjoyed.
Hi, Jim. My AVM is in a different location of the brain - right parietal lobe. I do wan to give you some advice that is general to all of us AVMers. Do not do any heavy lifting, don’t take any aspirin or antihistamines because they can thin your blood and cause a bleed. Feel free to ask any questions or make any observations…someone else here will have definitely been where you are!
Hi,
I don’t have a Micro-Avm, but a piece of my AVM wraps around my brainstem. Be very careful with this.My surgeon did an embolization up to the point where the AVM went to the brainstem and stoped. I am relatively independent at this point and want to stay this way. There are so many functions that the brainstem commands that could be lost if the surgery doesn’t go 100% error free.
Get as many opinions as you can, it will give you options and then you can decide. If you need any info. please ask.
Hey Mike,
Thanks for the response. I have seen/met with a lot of great doctors regarding my AVM. My options were embolization or radiation. Surgery is not an option because of the location of the AVM.
Recently they made an attempt at embolizing my AVM. However because it is so small and so deep, they could not get close enough to it to embolize it without taking unnecessary risks that would compromise my health as it is.
In March I will be going for a consultation regarding the radiation option. I hope something can be done via this method.
I appreciate any advice you may have.
Thanks.
Hi Jim,
I hope everything is going well for you and you’ve been able to get the info. you need about your AVM.
Have you been able to continue on your job? I’m limited with my AVM being in the brainstem, but I found that I have been able to work in the classroom, as long as I don’t lift too much.
Just wanted to say hi.
Hey Mike,
How are you? I feel very lucky in that I have continued to live a relatively normal life. I do still work, and many of the other things I used to do, however, because of the damage done by the initial bleed, everyday life can be frustrating at times. I now have some double vision on the right eye, which has been slightly corrected with prism lenses. (They cannot correct the double vision completely). Also, the right side of my torso is not as sensitive as the left side. (I don’t feel hot and cold very well thru my right hand). I also appear much more prone to anxiety, although I am not sure if that’s just psychological, or not, I get very frustrated at times. I look, and appear, very normal, but I have these issues to deal with that very few people know about!
In fact, I appear so normal, that the doctors weren’t sure what they were going to find prior to the MRIs and Angiograms. My AVM is so tiny, which is both good and bad I guess. The doctors have told me to carry on living, except maybe stay away from lifting extremely heavy weight.
Because they could not embolize the AVM with complete confidence, they have opted to consider radiation (because it is so small and so deep).
I hope you have been keeping well and good luck with everything.
Jim
All I know is that I have 2 very small avms at the base of my brain stem. I’m scheduled soon to have an angiogram to have a look at them.
Hi,
Our baby boy had a AVM bleed in his brainstem when he was 2 weeks old in augustb 2008. They did an embolization using platnum coils. They built a nest of them as such to block off the AVM. Myles is now 7 months old and progressing in leaps and bounds. He has had a shunt put in last november and has had to have a cerebral angiogram since to check that everything is doing what it should - and it is. His eyes are turned in (crosseyed) but hopefully will return with time. If you want any more info just ask - happy to share.
Hope all is well
Hello Christie,
I was curious if you are going to be receiving any treatment for your AVM. I also have double vision in my downward gaze - kinda frustrating. I've had it since I first suffered my AVM. They said nerves were damaged as a result of the AVM and my double vision may not get much better - at least things aren't worse! I received radio surgery to treat the AVM (two years ago) I should be scheduled for an MRI soon to see whats going on. Hoping for the best.
Good luck with everything.
Hi Jim!
I also have an AVM in my brainstem (specifically in the pons, on the right side). I am not sure what the definition of micro AVM is in terms of size- mine is small also though. I was specifically told by my neurologist that at this point there are no options for treatment because of its location. He said the risk of stroke to the area with embolization was too high and then said radiation might be an option in a few years when precision is better, but that even the gamma knife right now could either kill me or render me completely disabled and he didnt believe the risk was worth it (at this time)...I am getting other opinions as it seems that different doctors have different opinions. Mine is also at the trigeminal nerve nucleus so I have trigeminal neuralgia and he said that the only cure for that would be surgery (or gamma knife)- so I guess I am stuck with it for now?
Thanks for sharing you experience- I have had a rough 9 months- mine was discovered last August and I still feel I dont have answers about what possible treatments are...(if they are possible).
Take Care,
Patti
I am just wondering if you are a teacher? My 22 year old son had a hemorrhage in his brainstem 2 months ago, and is recovering really well (in spite of loosing the ability to swallow). This happened while he was in Teacher's College. We are planning on Gamma Knife and possible embolization. He wants to return to Teacher's College next September and based on his recovery I think it will be possible. Just wondering what your experience has been and if you have any thoughts?
Hello Susan, I am not a teacher but I can relate to what you are going though. I had GK about 5 years ago. It was my only option based on my situation. I suffered nerve damage down the right side of my body and i have slight double vision as a result of the AVM.
The technology is amazing so I am sure everything will be ok. I was only in the hospital for 1 day with the GK procedure - it was a very long day - but everything seemed to go well. Finger crossed, that was almost 5 years ago.
The double vision frustrates me the most, but I am obviously grateful for where I am at. I hope this helps. Feel free to reply if you have any questions.