Hi I’m just looking for some support and advice, I have been diagnosed with a left cerebellar AVM on my brain which has been growing for many years 17 at least without being noticed, I have been suffering with extremely bad migraines where I lose my right side, vision and speech. I was sent for a CT scan where it was noticed, my AVM has grown half the size of my brain which means it’s too large to get rid of, I have been told that the surgeon can shrink it with glue but it will continue to grow also he said it will take me to lose my mobility before he can do this procedure again, I am receiving my procedure of glue in October, this is causing major anxiety and fatigue, also I am at risk of a bleed at any time has anyone been in a similar situation?
I am so sorry you are in this situation. I have AVMs in my foot and eyes, so I can’t really get what you are going through, or offer advice.
I just wanted to pop on, send a virtual hug, and reassure you that we have an amazing community here, many who have cerebral ABMs. Hopefully they will be able to offer more.
Hi Rossee, welcome to our group. You will see we have a wide range of people here with a lot if different AVMs, and many you have a variety of treatment options, some with advice to not treat in any way die to risk. I hope collectively we are able to provide you experiences that may help. I had gamma knife on a fairly small AVM in my left temporal which I discovered due to a bleed, so quite different than our circumstances. I can tell you I was very scared and anxious about another bleed, then the treatment and the period after of waiting. I think most of us share this part.
Have you seen the surgeon as of yet or is your information so far from another doc? Reducing the risk is always a good thing, providing the risk reduction treatment is in itself not going to generate greater risk or deficits. One thing about our brains is that there is always some uncertainty, while we are advancing greatly it seems to me certainties don’t exist. I always say that the right or wrong answer of only known after the fact, the secret is to be at peace with your decision made based on all the available information. This is so important to have medical folks you are comfortable with and trust.
I would anticipate some of our other members pass along their thoughts and experiences and hope it all helps. Take Care, John.
Hi John, thank you I have met with the surgeon I went into a&e with a migraine as I had lost the feeling on the right side of my lips and my right hand for 5 days which was worrying I had a CT scan done which showed as the AVM then I was transferred to The Royal in Belfast where I then had cerebral arteriogram, I was sent to Liverpool for MRI scans for a clearer picture for the surgeon, I met with my surgeon again recently and he said the only surgery he can do is shrink the AVM with glue it’s too large to do any other treatments as it will affect my mobility, I was also told it will keep growing in the future but they won’t be checking up on it when I start feeling my mobility weakening again I have to get in contact, also I am at risk of it bleeding,
I really just don’t feel there is enough support and advice out their for people in this situation.
I had an avm rupture and lost movement on my left side. I was a healthy and completely normal guy and it came out of nowhere. I’m happy that you caught your avm before it bled, anyways. I wrote a book about my story and the strategies I used to cope with my anxiety and worries. I’m sharing this with you genuinely hoping that it helps you in your journey. Here is the Amazon link to the book https://www.amazon.com/gp/aw/d/0228827450/ref=tmm_hrd_swatch_0?ie=UTF8&qid=1692488560&sr=8-1
Good luck with your treatment. I hope everything gets taken care of in time and in the best ways as possible and that you’re able to continue living a full life without having to face any negative impacts of the avm. You’re stronger than you think. Never give up. Thanks?
Hi Rosseee, I offer support but no advice. Keep doing whatever you’re doing in terms of self-soothing… You are amazing. Best wishes, Greg
Welcome to the family @Rosseee & sorry to hear about your diagnosis.
It is difficult to take this all in but I would like to offer some words that may help a little!
You have the option to seek second or even third medical opinions in such cases, however if it is as large as what you’ve been told you may be provided the same advice.
As hard as it is just know the likelihood you were born this way & so many ppl live with AVM’s all their life without knowing it even existed as it caused them no issues whatsoever… being aware of what you have will keep you one step ahead in knowing how to live with it & the warning signs to look out for if it were to bleed.
I suffered a bleed one month after finding out about my AVM but if I didn’t know what I had & didn’t take the precautions & measures I took that day I may not be here to tell my story today… so it sucks but it also is a blessing to know.
The final thing I’ll say is that technology advances so much over the years, especially in the medical area… At some point what can’t be treated today may change in the future!
Sending prayers your way & please keep us posted on your journey or if you ever need to vent or need support… God bless!