Hi @mikenj ! Sure all my son’s procedures including Embolization, Failed Craniotomy and Gamma Knife were done at Houston Methodist Hospital under the direction of Dr Britz, Neurosurgeon . Excellent doctor. The failed craniotomy was due to the Neurosurgeon not feeling comfortable with how close my son’s AVM was to motor cortex so he stopped. The angiograms for Gamma were non invasive. Hope this helps. Hope things work out for you!
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Thank you, yes all this information helps. We are all learning.
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Just checking in with some good news, the Angiogram went well, The full prep and procedure took 1 hour, and then 2 hours of observation. The Dr are leaning toward operating to remove the AVM but I am pretty sure we will go with the GK option. I saw 1 presentation that indicated GK was 98% successful with the Grade 1 AVM of this kind.
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Hi Shpat,
Question, did they ever give you any anti seizure meds?
My daughter had that numbness on the face and arm 2 years ago and discovered the AVM. She is working to get the Gama scheduled. Just the other day she had another numbness incident. They put her on Kepra now for Seizures, which seems a bit drastic with 2 mild episodes in 2 years. Side effects are not great, she is exhausted and has a headache feels like a zombie (even though the dr told her there are minimal side effects.)
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Hi Mike, I never received seizure meds, no. I still get the numbness and tingling in my face from time-to-time, but I wouldn’t call it a major hindrance. I agree that anti-seizure meds seems a bit extreme for your daughters case… Personally, unless I had a seizure in the past, I would not be taking this seizure medication.
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My two cents. Hi! My son was getting these numbness and tinglings on his right side about one time per month. General practitioner told him it was his AVM acting up and giving his nerves in his brain some reaction. Now his Neurologist that we just met is calling them seizures. Not strong enough to spread but indeed seizures. Therefore my son is seizure med Keppra was increased to 1000mg up from 500mg. Since the increase he has not had numbness or tinglings. Not even minor events. I do believe now that they are seizures. Just sharing with you our experience. Blessings
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Thank you Shpat, and hope you find positive results this month. Outcome for us was, we reached the Dr that prescribed the Keppra, and he said it was ok that she discontinue it having only taken it for a day or 2. She quickly returned to normal. Follow up with a Seizure Dr, he indicated Seizures are short, maybe a few minutes, and as this was an hour long, probably not a seizure. Plus she had a 12 hour EEG that showed no issues.
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Thank you for sharing. Hope for the best for your son. A follow up Dr said that the adverse affects of Keppra on my daughter occur in about 20% of people and that there were other meds she could take if needed. but for now she is off the keppra.
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Glad she’s back to feeling normal! I had my 6 month check this past Monday on 6/10 and as expected, no notable changes just yet.
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Hello I was about to ask about your MRI cause I remembered we had the radation treatment very close.
It’s too soon I think to show anything,they said mine is lightly smaller now.
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Hi Shpat,
I hope this note finds you well. I was hoping to hear some good news from you on your treatment, maybe to give me hope for my daughters.
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Hi Mike, so far I’m about 13 months post treatment. I went in for a scan on 12/23/2023 for my 1 year check up and got some positive news. Per my Neurosurgeon, it looks like all three AVMs have sealed earlier than expected, which is a big relief. They do not see any blood moving through them is what I was told.
My scans are showing that the target areas are seeing ‘significant’ swelling, however I am asymptomatic. I’m experiencing no deficits and have lived my life normally. I have been prescribed Trental and Vitamin E to take for 3 months to try and combat the swelling.
I’m going back for an MRI in March to monitor the swelling in my midbrain area. My neuro advised me that a CTA can better confirm the obliteration of my AVMs, so I will likely take that later this year to confirm his suspicions.
I’m extremely grateful for a smooth journey thus far. Sending positive vibes to you and your daughter. You guys got this!
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That sounds like such good news. I am truly happy for you, and this gives me some help in calming my nerves as we get closer to the treatment, which is finally scheduled for February.
I know the swelling is a concern, so my best wishes to you to get past that. You are an inspiration. Thank you!
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I appreciate your kind words. It’s a long journey, but it sounds like you guys will getting good care. Trust the process, and do your best to stay positive. You’re a good dad!
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