My son had 2 emobo's and then a cranio to have his avm removed in May.. He got out of the hospital on June 2nd. We went back to the hospital for an mri on July 5th. We got the mri that morning and then went to the dr. They told us the mri looked good and to come back in 6 months for follow up angiogram. Well...today I get a call from the hospital saying they need to schedule an angiogram for this Monday! I asked them why, that it wasnt suppose to be until December. So a dr from the neurosurgery team called me and told me that they had to leave a small vein in when they did the surgery because if they messed with it, it would have caused neurological deficits. The mri showed there is residual.
I just cant understand why we were told the mri was fine, then a month later, they call wanting to do an angiogram asap because of this vein. The dr. said he thinks it is fine, but wants this test to get a better look.
If there is residual, doesnt that mean it can grow back? And would I even want them to mess with it, since it can cause more deficits.
I thought this was all behind us, I am so devastated right now!
Thank you.
Stephy
I'm so sorry, Stephy -- such conflicting news is very difficult to take. I am sure you will be very anxious until the next angiogram is behind you. Write down all of your questions and concerns so when you next speak to your son's doctor, you will be sure not to miss anything. We'll be praying for your son and sending good thought your way!
I'm so sorry for your frustration and pain. I know exactly how you feel. We have also been given one set of news only to have it be changed shortly after by another doctor. With those few words, the squeezing knot in my chest returned.
I'm sorry the neurosurgeon didn't tell you what they had to leave. Try to take a deep breath and focus on the next step. If you're family is like ours you're probably just looking for the end and a return to some kind of normal. Hoping for it to come quickly, but knowing that patience and taking it one step at a time is the only choice we have.
Keep us posted. Jacque
He does have a small residual avm left. The neurosurgeon suggested doing Cyberknife radiosurgery. We spoke to the oncologist last monday and he told us about the risks. Lane is only 15, so it would raise his risk of getting cancer and he told us while the radiation is working it doubles the risk of a bleed.
I just do not know what to do at this point. The surgeon told us that another surgery or embo would be too risky and our best option would be the radiation. I am waiting for a phone call back from him, to find out why he thinks radiation in a 15 year old would be the right treatment. I am just so heartbroken that my poor Lane has to go through more of this.
Hope all is well with everyone.
I'm so sorry Stephy. I'm sure you're beyond frustrated right now. With residual AVM there is the potential that it can grow back. What do the doctors think would be the neurological effects if it were to be removed? Perhaps you could seek other opinions?
They haven’t told us. He just said it would be too risky. I am waiting for a phone call to ask him. He lost partial vision in the first surgery and I think that is a concern.
I am very sorry you have to go through this, Stephy. Don't rush into anything -- take plenty of time to gather information and get more opinions. I hope the way will become clearer for you soon.
Anyone here who had a residual avm?My brother had craniectomy and embolization about a month ago. Then we found out that the interventional radiologist leave a small tuft to save his vision. We are worried if the residual avm will re bleed.