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AVM Survivors Network

Treatment options

Yesterday I had my first appointment with a neuro radiologist after being diagnosed via letter with my avm.

As I’m sure you will have all experienced it was a pretty stressful and confusing conversation.

In short I have a avm which is just over 3cm on the top of my brain on the right hand side (sorry can’t remember the medical terms). I’m told the location is a positive but it was a lot bigger than I was expecting.

To save people reading my background page, the reason for the Mri which found the avm was that I suffered some form of seizure on 15th September during the night. This was the first and last issue I have had.

Having had an eeg the doctor can find no link between the avm and my seizure and have therefore classed this as an incidental finding. He can provide no reason for the seizure which seems odd considering I am pretty fit and healthy and have no other medical issues.

The doctor has suggested that based on a recent study into avm’s by a French consultant (again apologies I have forgotten the name of the study) that it is deemed that the risk is significantly higher to perform any procedure to remove / reduce the avm than the risk that it hemorages. He stated the risk of a bleed was 1% but the risk from radiotherapy and surgery was significantly higher.

He has therefore suggested the best option in his opinion for me is to do nothing. He stated I should just accept I have this and move on, which as you may imagine is very difficult to do.

His next “preferred” option would be radiotherapy which would be done in Sheffield.

Just to confirm I am not critising the doctor as this may be the consensus of other professionals in his field but it was not the outcome I was expecting.

I am awaiting a letter with a summary of his advice but am left with so many new questions, for example, how will I have to adjust my life if I choose to leave the avm untreated?

I intend to seek a second opinion form another consultant but am left with the decision of what do I choose to do?

I’m not sure I am able to leave it and do nothing as I will always be left wondering when or if things may go wrong.

Has anyone else had a similar situation?

I am very new to this world and would appreciate any advice available.

I can provide my doctors details / hospital details if needed.

Thanks

Gary

Gary, most definitely get several opinions. Studies are not always what they appear, and sometimes medical news will declare a study a "game-changer" even when that study tells us nothing that we didn't know before. Most people here elect to treat their avms, though in some cases, not treating is the best option.

hi gary, treating or not treating? thats a tricky decision for us all. I have been told that mine is not in good position so inoperable but they are putting me foward for gammaknife BUT only because my avm has recently started causing a secondary condition. If it wasnt , like you they would suggest to leave it alone. Doing nothing for some people, me included, would be hard and I’m not sure if I could live with that. if gamma knife turns out to not be suitable for me im not sure what I will do, my neurosurgeon wont do embolisation either as he thinks that its too risky. its hard to know if thats his general opinion or just in my case, he never said. If your unsure on the advice go for a 2nd opinion, I struggled with getting one as a referral has to be done and my gp wouldnt so I went private in the end. I got an appt with another neurosurgeon within a week and it cost £250, best money I have ever spent because the second opinion was the same as the first so if nothing else it
gave me piece of mind. I have read that any form of treatment can increase the risk of rupture 3 fold so you have to have confidence in your doctor and what they suggest. one tip I can pass on, I was really worried that at these meetings I wouldnt remember questions to ask or retain info given so I took a pre planned list of questions to ask and politely made him answer them, they dont give you long and I recorded the meetings on my phone to listen back to later, its amazing what you forget when your there!!
hooe you fing the right answers soon

hi again, the advice I was given was to try and keep on an even keel with blood pressure. avoid contact sports, avoid caffeine, limit alcohol, no smoking (if you do) basically avoid anything which might raise blood pressure including heavy lifting. Unfortunately telling someone that they have an avm probably massively increases bp!! having had a seizure how does that affect you as a poice officer? I’m assuming you can no longer drive having had a seizure?

Hi Gary -
I'm sure you're feeling a little overwhelmed. I know I did for the first six weeks or so after my daughter was first diagnosed. Hers is four times the size of yours (no, that's not a typo). We have been told it's inoperable and embolization isn't an option. We have had one doctor say he can treat it with radiation over many years. We're still not sure what we're going to do but not only are we going to a consolation with this doctor, who performs cyber knife radiation (Dr. Chang at Stanford), we're going to see Dr. Lawton at UCSF, who uses Gamma Knife and we're going to Mass General to discuss Proton Beam Therapy. In the end, we may opt to do nothing, but at least we can make that decision knowing we've looked under every rock and explored all the options with all the best AVM doctors. Dr. Spetzler at the Barrow Institute in Phoenix and Dr. Rosenwasser at Jefferson in Philadelphia have also reviewed her images. I truly believe you can't make a decision you feel 100% sure about until you have talked to every doctor under each category. If someone says radio surgery for you, explore which options you feel most comfortable with. This is new to us, as it is to you, so I know the fear and uncertainty you're going through. This site has a lot to offer in the way of support and not feeling like you're alone. You can also learn a lot just by reading the experiences of others. Hope that helps.
Leslie

Before trying to decide what to do, get a second opinion, even a third. There are a list of questions on the site here under AVM information that are helpful to take in and ask when you speak with a neurosurgeon. It's important to ask how many AVMs a vascular neurosurgeon has treated, what the complications are of a particular treatment and what the chances of those complications would be.

Every case is different, so it may be that your AVM is better left alone for now.

There's at least one member on this site who was told by one doctor that her AVM was inoperable and would need to be monitored rather than treated by surgery or radiation or embolization, but when she saw a second surgeon because the symptoms she was experiencing were becoming intolerable to her, he said he could remove it via craniotomy and did so successfully.

With something this critical to your health, you definitely want a second opinion, and maybe even a third.