My son is 15 years old. He had his first rupture on 4/10/2020 which is how we discovered the Spetzler-Martin grade 4 AVM in his parietal / occipital lobe. He is very lucky because he bled into a ventricle and has since recovered in full. The problem we are facing is what to do now. All of the doctors agree doing nothing is a very bad idea. Unfortunately, that is where their agreement ends. The 3 main options we have been told:
Remove-- Risk blindness, speech and motor function issues which are a real possibility. We have been quoted up to 50% chance. (I hate to put my “normal” child to sleep for surgery knowing that he may have so many problems when he wakes up.)
Gamma Knife in 3 sections wait and then likely remove. We have been quoted as low as 25% chance this will work and as high as a 75% chance this will work. I have been told the risk of side effects are 1% but then other doctors have told us that there is a high chance of necrosis of the surrounding tissue which can lead to the same problems as above. We have also been told brain tumors may develop in the future as a result from this treatment because the AVM is so large and will require a lot of radiation to successfully shrink. I would VERY much like to know about others who have tried GK and how it has gone…particularly where you went for treatment, size of AVM, and side effects experienced. Are you happy with your GK?
Embolization then Radiation then removal – This super confuses me as some doctors say you can’t do Embolization then GK where as others have said because he has such a large AVM you really need to do Embolization first.
I have photos of the angiogram, MRI, CT-A, etc, and all the doctors we have talked to on his group FB site “A Cure For Kyler” if this helps.
My husband and I are just trying to get as much information as possible to make the best decision. We know our son has this ticking time bomb in his brain and we want to do our best to try to keep him healthy.
Advice and Personal Experiences appreciated.
Hi. I had an AVM ruptured when I was 16. My doctor suggested a craniotomy because he was concerned that it may rupture again (as I believe that if an AVM has already ruptured the chance of it bleeding again sooner is greater). Although, I did have my AVM return after it was removed, which from my understanding tends to be a rare issue with younger patients. I am now faced with the GK or craniotomy decision as well.
I hope this helps in some way. I wish your son all the best.
I have a grade 3 avm. It is still there although smaller. I have had 3 embolizations and 3 radiation treatments. The first 2 embolizations were done a month apart. Followed by 2 radiation treatments 6 months apart. Waited 2 years and it had recruited 2 more feeders. My doctor said that were the the 2 radiation treatments failed to get one area of the avm, therefore letting it recruit more feeders. So the next go around they did radiation before embolization. That didn’t help either. I am sure it may have shrunk a little, far from gone. I was fortunate to have a seizure as my first warning sign. However, that has also yet to be successfully treated. I will have a Vagal Nerve Stimulator on June 9th. It will take awhile to see if it is successful.
When my daughter was born and all the options were put in front of us, it was such an overwhelming and terrifying time. How could we take responsibility for such a huge decision when the drs themselves couldn’t agree on a form of treatment. But ultimately that’s what it came down to. We opted for a craniotomy and thankfully she came out alive and well.
It’s now 12 years later. She has proliferative angiopathy and this time the drs all agree that it’s too complicated to treat so we continue to monitor her with annual MRI and pray for the best.
Hello!
At age 15, my son also was diagnosed with a very large grade 4 AVM at the basal ganglion. He had several bleeds, doctors did said it couldn’t be treated. He had a trial of stereotactic radiation at 2 large medical centers with no effect. At age 30, was in NYC and had a bleed. Ended up by the grace of God at NYP-Cornell hospital and met Dr. Patsalides, the most caring neurosurgeon I had ever met (I am also a nurse). He took an interest in John and was willing to try to help him. After 4 very difficult embolizations, he had 60% obliterated and my son then had 2 stereotactic radiation treatments also at NYP Cornell. He was pronounced cured 3 years later. He does have weakness on left side, but has adapted and lives a full life. He was already getting considerable weakness from the bleeds.
If you have not already decided what to do or if you have and want a second opinion, I highly recommend Dr Patsalides. Just google him at NYP Cornell Neurosurgery. Prayers for you all!
Dianne
@TiggerLily I am so sorry about your son.
The best place in the USA is not too far from you and they do remote consultations I thinks it’s around $150
Dr Michael Lawton is at Barrow in Arizona and is considered the best. They usually work on cases where people have been told no. I have seen his work and he is friends with my ent and would of been my dr when he was in San Francisco but I was already a patient at Stanford.
If I were to have a craniotomy I would be flying or driving there.
Hugs Angela
I’m very sorry to hear about your son and would advise if you havent already please try and get some more opinions where you can from other doctors… it is such a delicate option that only you as the family can make with him no matter what anyone here has experienced good/bad as we are all different.
I can only say that they are always going to tell you the risks to consider everytime and then you have to weigh up the options, which may be wrong or right.
I guess you need to weigh up how urgent the AVM needs to be dealt with and how this will affect his quality of life moving forward… this is why getting medical opinions from other health professionals is beneficial… I will keep him in my prayers and wish you guys all the best for the future and please keep us posted here… God bless!
