Surgety Consult Result,

Hello Everyone,

An update on the surgery consult. We met with a neurosurgen on Friday. She had a lot of knowledge about avm and the various treatments. She spent a lot of time with us answering questions and explaining the MRI. She is confident that given the location and size of the avm she can remove the avm completely with minimal side effects if any. If we go ahead with surgery it would take place in August.
So now we need to make a decision. I tend to lean toward the surgery just because I want the avm removed and done with. My husband feels that radiation is safer just because it is not invasive. But we both agree that the 3 years wait is too long.
According to both consult my husband is a good candidate for either procedure. But neither will commit to confirm which is the best treatment. They leave the final decision with the patient.
The radiation treatment would take place at Stanford Medical Facility in California and the surgery would be done at Kaiser in Redwood City, California. I would love to hear from anyone who has had a craniotomy and what their status is now.
Any comment would be appreciated. Thank you for sharing your experiences and wisdom.
Silvia

I’m just curious, does your insurance cover both?

YES

I viewed the decision as a risk-reward trade-off. The crainiotomy is higher risk (human error, infection), but the reward (immediate obliteration) is higher. Radiation is lower reward (2-3 year wait), but the risk is lower (non-invasive).

I decided that the wait was tolerable, so I opted for radiation and my wait is nearly over. Time went by quickly. I hope this nerdy answer helps.

Haha. Good stuff. Do you mind if I borrow that one?

How did radiation cause Epilepsy, Liam? For some reason, I thought you had surgery as well as the radiation. Man, my memory is getting worse and worse…

Being over does it include off medications.

The first year I was on no medication at all. The location of my AVM (cerebellum) is supposed to be pretty resilient so side effects are minimal.

At 12 months, I had nausea and slight numbness caused by radiation damage to surrounding tissue. The neurologist put me on steroids for 3 months to reduce swelling. Nausea went away, numbness is 90% gone. Side effects of my steroids (bad skin, weight gain) are purely cosmetic and temporary. Hope this helps.

At 15 months, my AVM is months away from being completely gone.

Your neurosurgeon can probably give you more guidance based on the location of the AVM if you ask.

Ask your neurosurgeon what would be the possible side effects of radiation? What would he/she expect to happen if your husband had significant radiation necrosis? Would he have seizures, nausea, etc?

What are the side effects of a potential rebleed? I was told the side effects would be my sense of balance and may not be permanent. His might be different and serious enough to warrant getting it removed more quickly.

I was of the same mind as Ben (no pun intended). The surgery seemed like a quick solution, but the risks of them being in there outweighed my issue with waiting for obliteration. Mine was way inside on the brainstem, so they would’ve had to really ‘dig’ for it. I was fortunate- I had little issue after the radiation. I think it worsened the double vision I had from the original bleed and fatigue was a prolonged issue. However, I still think it was preferable to the risks of infection. The wait has been tough, but the love of your family and the joy of life can make you forget the impatience that comes with the radiation option.

Ultimately, its your personal decision. Sounds like the AVM is in a good spot (if there is such a thing) that they can get to it easily. I know you’ll make the right decision for you.

Hi Silvia,
I had a craniotomy…and it was invasive however the doc. said that it was ready to break! And it did durning surgery. I’m happy that it is over and out! It is a long journey so, I’m sure whatever you decide will be right for you! Best of luck
Sending Angel light and love…d

Well, we are going for the second craniotomy anyway. Im my son´s case doctor don´t advise radiosurgery because of his age. I know some kids do radiation but I think it is just when they cannot remove by surgery. I think you have to balance the risk of a bleeding agsinst the risk of infections, etc. I will all depends on the location of your avm, the flux, etc… I still believe surgery is the best option.