Hello and thank you for adding me to this site. My 16 year old son started having seizures 7 years ago and MRI showed a deep seeded lesion in his left insula. He has seizures every day some days many. Nobody seems to know what the lesion is, but we have not heard AVM mentioned till now. What is sad is that originally we were referred to Dr. Spetzler not because anybody thought it AVM but because of the location and he looked at the MRI and called us and said he will take whatever it is out and needs no further tests, but we got scared and decided to first try meds/diet… Feeling stupid now that he has retired. Anyways, we failed everything and now our son is having word finding issues and clear deficits on his right side not to mention daily generalized seizures. He said he wants surgery, we found a great surgeon who specialises in his area of the brain, but now he is concerned it could be AVM. The CTA report from radiologist suggests cavernoma, all of the many MRIs he has had these years list all kinds of things but nothing about cavernoma or AVM, we did know there was calcification. We have surgery scheduled next tuesday, already took him out of school and last night get a call that he wants to have cerebral angiogram on Friday 4 days before surgery to check for AVM as we would need to get someone else if it is one.
We are waiting for him to call us, meanwhile I feel like I am going to lose my mind. My question is, is cerebral angiogram the only way to know and is it for sure? He has had 7-8 MRI with/without contrast, MRA, FMRI,VMRI, CT/CTA and SPECT. We are worried about short term risk, especially right before surgery, but even more so long term risk all this radiation for a child, he just had the CTA last Monday. He has been a trooper, but still so much to deal with. Thank you in advance for your help.
From what I understand, cerebral angiogram is the definitive test for avm, and it shows things pretty clearly. They will need that to plan and strategize surgery if it is an AVM anyway. I understand your hesitation. I just had mine done a few days ago.
Welcome to the site. It sounds like your son has had quite a pile of scans. I’ve had quite few sine my rupture in May 2016. Included is two angiograms, the first when I went in by ambulance and have no recollection of. The second was two months later and was fully awake and aware. The angio is “the” examination for these. I have a copy of my second one and it shows every vessel involved. I had gamma knife in November of 2016, and they debated the need for another angio but were satisfied and only did a CT and MRI pre treatment. I’ve had a one year MRI follow up and am awaiting year two. If they are satisfied it may be gone they will do an angio to be sure. A long way to say the angio is I believe, a great thing in your sons case. Once again welcome, John.
That test will tell them what they need to know. I hate what y’all have gone through and it seems like there’s not a concrete diagnosis, but after this angiogram, I’m sure you will all know the next step.
Prayers for comfort and answers.
Lisa
Thank you everybody for your responses. This is a very supportive and positive group. We had the test yesterday, it came back negative for avm. I did feel better about doing the test because of this group. We were in hospital all day 8-9 they do not plug kids so 6 hours in bed after. Also have to say the price was impressive. Feeling very anxious.
A ketogenic style diet and THC/ CBD combo is the only thing that has helped my seizures. I use to have three a day and I can tell you that you’re not really living when you’re like that, I had almost no short term memory and completely exhausted. All my symptoms were at a high. Since November I’ve had four seizures that’s about less than one a month and it’s given me my life back. I don’t know if this information is helpful for you, but when I go on the Epilepsy forum people hardly talk about it because they are to busy switching up and combining seizure meds. I wish the best for your son!
I am so glad it is helping you. Unfortunately we have tried both. We did keto, mad, and lgit for almost 4 years with very limited results. We tried CBD as well, not sure if we could have given more time but the seizures are clearly taking a serious toll on my son and he said he is tired of trying things. Keto for sure works for some.
It only works for me with the THC too, it’s a very fine balance of the three keto/THC/CBD… and the truth is after a couple months is really hard (keto) but the alternative is really bad. Every person is different, I’m guessing my issue is basically inflammatory and that’s why it works for me.
Welcome to the group! I also have an AVM in my Cerebellum. The definitive test is an Angiogram! This scan will show the doctors exactly where to focus the Radiation. My doctor’s kept saying “they didn’t see it” with the MRA’s or MRI’s. With the Angiogram, they saw it and used Gamma Knife Radiation to treat. I wish your son the best of luck. P&P (Prayer & Patience) also works. God Bless you both.
We did the test but then the MRI a few days later showed subclinical strokes and the surgery was canceled, they are telling us it is common, but I am not seeing it anywhere.
Hi John, thank you for your response. I posted a question in general group but am not getting any feedback. I am trying to find out any info on Dr. Lawtons replacement and UCSF Dr. Abla. Was wondering if you have heard anything. Thank you.
I haven’t heard and did a quick search using the magnifying glass in the top right corner and only found your posts. I’m not that tech savvy so you might want to try a coupe searches and see if you can come up wth anything. John.