My seizure occurred right after the surgery. I wasn’t aware of it but my neurosurgeon told me it happened. Haven’t had one since which has been 21 months. I’m on 1000 mg Keppra ER. Hope my neurologist will try to wean me off soon but she is concerned because I was left with encephlamacia in my frontal lobe after the surgery. I’m told this is common after brain surgery but when you have this, there is a 50% chance of recurring seizures. We’ll see. I have no problem staying on the meds if it could possible keep seizures at bay but I’m hoping the dose can be reduced. Fingers crossed.
Hi! Amazing story to read and to hear about all of the success!
I too had an avm in my left temporal lobe. I was given the same options and decided to do the craniotomy as well because i had just turned 25 at the time. I was not willing to live the rest of my life at risk of another bleed. They found it because i had an aneurysm in two openings of the avm. They said the blood spot was the size of a half dollar. I do think finding the right surgeon was the most challenging since the stats of less than 1% of people in the world have it.
8 years later I do have temporal hollowing. I saw a plastic surgeon and he said when I’m ready he can take fat from other parts of my body to fill it in, although he informed me it doesnt always take on the first try. Until it becomes more noticable I am just going to hold off because I really have no desire to be put under again until necessary.
Anyways, thats a little of my story. I always love hearing about other peoples journeys, especially since yours hit home with me.
P.s Just curious about how you are doing with headaches and pain now? Pain is still very present for me and low dose pain narcotics are the only thing that help me live my life as close to normal as I can.
Welcome to the family and thank you for your detailed post.
Like yourself I was the same age upon going through my AVM ordeal, which included craniotomy for removal after a bleed… glad to see you’re doing well and can advise it does get better with time… God bless!
Sorry it took me so long to reply justgrateful. I had the siezure right after my craniotomy while I was in the hospital.
Yes I did hear and read about the embolization method. From what I’ve read online, it is common to first do an embolization a day before the craniotomy for AVM resection.
When I asked my neurosurgeon why he wasn’t going to do an embolization before my AVM resection even though I had a high-flow AVM, he said that embolization only makes the resection surgery easier for the neurosurgeon but could impose a higher overall risk to the patient. This is because when targeted blood vessels are blocked off from embolization, the neurosurgeon would have less blood vessels to obliterate during the resection surgery.
However, embolization itself is a very intricate procedure where the neurosurgeon passes a wire through the main blood vessel to areas where the glue from the wire is released to block off targeted blood vessels. It is easier to mess up an embolization as its error window is small, and often ends up in the patient getting a stroke when the glue is released to the wrong areas. He has seen this happen in dozens of cases globally where the patient end ups with significant neurological deficits.
Therefore, my neurosurgeon only performs embolization if the targeted blood vessels are too deep in brain to get to manually. Thankfully, in my case the AVM was mostly located on the surface of my brain.
In short, he believed that in my case embolization before the AVM resection would transfer more risk to me as a patient, and he did not want that.
Regarding the risk to vision, my neurosurgeon did mention that it could affect my vision (something called ‘Pie in the Sky’), but in my case the effects would be too miniscule to even notice. True enough, my vision feels 100% intact post-surgery. This risk of vision loss would be higher in cases where the temporal AVM is more posterior-lying.
Great to hear that my story resonated with you! So awesome to read that your left temporal AVM was 100% removed too!!!
Regarding headaches and pain (now 3-months post-op), I would say that it’s close to none. The only un-comfortability I face now would be from the tightness in the skin area surrounding incision spot, but that thankfully is very manageable.
However, I am still on 1500mg Keppra/ day and will gradually begin weaning off it soon. Not sure if that will affect my pain levels in any way or make me more prone to headaches. I am only aware that once I wean off Keppra, I could be more prone to seizures.
Btw, regarding temporal hollowing - I believe that the fat transferring method you described is called ‘fat grafting’. That could work, but it will not solve the underlying issue of the atrophied temporalis muscle, that some reconstructive surgeons are capable of resuspending back to original levels. You would be able to achieve the desired result, without having to go through multiple fat grafting sessions!
Also, has the hair surrounding your left temporal incision grown back? The hair around my incision is still sparse. My neurosurgeon said it could take ~6-9 months to grow back. Wondering if you experienced anything like this, and if so, how long did it take for you to see improvement?
Fingers crossed to no seizures to the both of us!
Btw, have you experienced any side effects after consistently being on Keppra for 21 months?
Yes, fingers crossed for both of us. The only side effects I have had were in the very beginning. I got tired after I took the Keppra. I was on a morning dose and an evening dose. The dr. Put me on Keppra ER or XR which I now take around 7 pm. Much better and I am no longer tired during the day. This has been a great med for me. My first neuro overmedicated me by putting me on Dilantin 1000 mg and Keppra 1000 mg. I was sooo overmedicated. Needless to say, I found a new neuro and I love her. Sorry this was so wordy.
It’s so awesome hearing about your recovery and manageable pain level! It’s such a blessing to meet someone who understands going through all of this, not that the AVM is a blessing lol. Did you have any deficits before or after the surgery?
That’s good to know about the fat grafting, hopefully I won’t feel as though I need it that bad but always good to know it can be done!
With my hair growing back, my surgeon only had them shave along the area of the incision, thank goodness it sounds the same with yours, and I did have some that didn’t grow back right away. I don’t feel it took any longer than 9 months to a year until it wasn’t even noticeable and now, besides the scar itself, there isn’t any permanent areas of loss. I can never part my hair on the left unless I’m willing to show my battle wounds but out of sheer luck I always parted on the other side anyways lol.
Thank you so much for your post. I have an AVM that is located in my left temporal lobe. I’m consulting with a surgeon at UCSF on Monday. I am so scared. Mine was discovered when they did a full body scan on me to see if I had cancer that has spread. This was about a year and a half ago. I received three opinions at that time. One said it was no big deal, the second said that I could do the gamma knife and the third said I should do surgery as it was a ticking time bomb. I decided to wait and watch. About a month ago I had a small bleed. I lost my speech and couldn’t comprehend what people were asking me to do.
Since I am consulting with the surgeon on Monday does anybody have any good questions that I should ask? My speech and writing skills are not up to par yet due to the bleed. Thank you in advance.
First off, welcome! Its great you have found us. I had a left temporal bleed bak in 2016, and had gamma knife. My AVM was on the inner portion of my lobe, which made gamma knife the least risky option, it was difficult to access otherwise.
I would make a list of questions, talk about level of risk of each procedure. My discussions were focussed the potential side effects f the procedures. I know there are no certainties but mine would good at giving me an idea. I was able to determine that my least risky option, even with the lag in obliteration, was the gamma.
A month is not long for our brains, you are doing great! Take Care, John.
Here is a good list of questions to ask… Questions for Your Neurosurgeon (brain and spine avms)
And here is another list… Questions To Ask Your Doctor