Right temporal lobe avm post surgery - 28 years old

Hello my name is Danielle Collins and I am 28 years old. I was an extremely active girl and was in a Pilates class when I felt a sharp pain in my head that caused me to leave class and spend the next 2 days in bed. I was terrified of medicine (as I have been sober now for 7 years) and didn’t listen to the advice from others to take Excedrin or Asprin to ease what everyone thought was my first migraine. The headache started Monday and by Wednesday around 8:30am my husband and I decided to go to the ER because we were scheduled to fly out of town the next day and I was worried about the pressure in my head on the plane. At the ER my first CAT scan of my entire life revealed a 2.9cm bleed in my right temporal lobe, superficial in nature. We were immediately transferred to the icu at GW hospital in DC where an angiogram and MRI put the plan in motion to embolize the feeders and undergo a craniotomy on June 12, 2017. I found peace in 2 Timothy 1:7 that says "For God has not given us a spirit of fear, but peace (love), power, and a sound mind. On June 12, 2017 I received the last part of that promise: a sound mind! I was released from the hospital on June 12, 2017 and have been home recovering ever since. I am not currently taking any pain medications and have been on Keppra ever since I was admitted on June 7, 2017. I take 500mg twice a day and seem to be doing well. I have had a few days where I was able to walk almost 4 miles outside throughout the day, go to the nail salon, and drive around the block. I’m not a little shy of a month post op and have been experiencing days where I am just tired and feeling like I’m backsliding a bit. Maybe I’m overdoing it? I’m curious about the following

  1. experiences with Keppra as I have never had a seizure pre or post surgery
  2. what the first few months of recovery looked like for you all with regards to exercise, amount of sleep, muscle aches, etc.
  3. how long before you were able to fly on a plane?
  4. how often are you scheduled for checkups with your neurologist?
  5. what foods/diet have you found work the best? Any to avoid?

I am grateful each day for a new day and feel so blessed to be a part of this community that now has the opportunity to really appreciate all the small moments of life that I took for granted for so long. God has blessed us with a trial that I’m choosing to see as His marvelous blessing in disguise.


Welcome Danielle!.. Wow, you’ve packed a lot of AVM stuff in a short period of time and sound like your recovery is going really well. I can’t relay any post craniotomy experience as I was a gamma knife patient 6 months post bleed. I found that I had to be really careful and manage my rest well when released from the hospital after the bleed. Its a little weird now, it seems like I have no transition period to being tired. I seem to go from fine to wiped with nothing in between. Sorry I couldn’t relay more. Happy you’re on the site. Take Care, John

My experiences with Keppra go way back. I have been taking Keppra since 2000. 1600 mg is how much I take morning and night. The side effect that I had for a while was it just made me very tired. Funny story with the pill taking it right before I would go to school would fall asleep in class. Teacher new the family well so didn’t get in trouble she would just hand me a soda to try and stay awake.

My recovery was a heck of a ride My AVM ruptured. After having emergence surgery to stop the bleed was in coma for two weeks woke up blind and paralyzed on my right side. I’m no longer blind or paralyzed but 3 months of every type of therapy. As for sleep slept to much because my pills side effects was sleepiness

As for flying on a plane I was air lifted to the hospital and when done with my first surgery didn’t fly for 2 years not because I couldn’t just most of the time family just drove long distance. The next time I flew was in 2002 to a family wedding

My Neurologist checkups were twice a year every winter and summer. In 2006 they decided once every year ben that way ever since.

Food whys never rely been on a diet. I work hard labor do a lot of activities such as Bike trail water skiing rock climbing and other hobbies to stay active.

If you have any questions just ask god bless.

Wow, you are a true warrior! Your story is so inspiring and gives me hope that I will one day feel comfortable running, biking, flying, and all the other things I loved to do so much before surgery. Now, I’m sure they are even more enjoyable for you and they will be for me given our new perspective! I appreciate you sharing your experience about Keppra and post op neurochecks. I hope you’re having a wonderful Sunday and I’m grateful for you sharing your story. God bless you and keep you.

It has been quite a ride, but I’ve never been more thankful for life than I am now. I’m grateful to have found support on this website from others like you who have known this struggle and know God has great things planned for all of us. Thank you for welcoming me to the group.

Welcome to the group Danielle:

So glad you found us. We are here to support and encourage you on your AVM journey. My AVM journey is different from yours, but a journey none-the-less. Mine was 4 cm in my Cerebellum which controls walking, and coordination. It was found after it ruptured in 2014. My journey included:

  1. No Keppra - only Tylenol for pain. Had no seizures.
  2. First 6-8 mos., had no energy. Tired all the time. Really bad short term memory.
  3. Have not flown yet. Still scared. Doc says flying may result in severe headaches for up to 3 days after flight. Or, may not be a problem at all. When the right trip presents itself, I’ll decide then.
  4. Was seeing Neuro about every 6 months. Had Gamma Knife Procedure in April 2015 and AVM appears to be gone, so visits will now be as-needed. Need one more Angiogram w/contrast to certify that the Monster is gone.
  5. I found no magic food, but now have a real affinity for sweets.
  6. My special recipe for handling AVM’s is, Prayer and Patience! Good luck to you. Keep us updated. We’re here for you.

Hi Danielle, From the start of your post you seem to be doing great after having a brain haemorrhage !, No matter what the size etc, its still a major thing :slight_smile: , and sounds like your making great progress. I’ve answered your questions below with my own experiences as I to take 2 x 500mg Keppra each day since my bleed 31st Dec 2013. My docs said it was only a precaution that I was taking it and if I wanted to then I could come off them with doctors supervision, But this would mean that I could not drive at all in case I had a seizure. I figured that better to take 2 pills each day and have the freedom and peace of mind being seizure free, than have a seizure which are horrible.

Hope this helps a little. Take care


Hello Sharon,

Thank you for responding and sharing your experience. I’m glad to hear all seems to be going well for you! I pray you will continue to recover quickly and feel stronger each day - mentally, emotionally and spiritually.

Hi Martin,

Thank you for being so candid and providing so much helpful information! I completely agree - the two pills a day and peace of mind sounds much better to me than a seizure! This whole experience has given me reason for pause and a chance to reeevaluate pretty much my entire life :slight_smile: I feel stronger each day and I’m learning to trust again. I hope things continue to go well for you and really appreciate all the insight you provided. God bless you. - Danielle

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Thanks Danielle, someone much wiser than me said to me once you either live in fear or faith, that is in no way religious , it means if faith that you are just sure everything will be fine :slight_smile: you have faith that you will be ok , or fear you are afraid of the unknown and think of the what ifs , what if I have another bleed ?, what if it’s worse , etc … I choose to live with faith and have moved on from my avm I no longer give it a second thought :slight_smile:

Please keep us all updated on how your doing , take care


It’s been an adventure so far huh? My hemorrhages happened in my Right remporal lobe as well. Being tired is to be expected and it sounds like you’re also over exterting it a bit. Have you been cleared to drive?
Sleep is important for everyone’s brain but in someone with TBI it’s especially important in helping to preserve the remaing neurons.
I waited 3 mos before I flew but my surgeon & neuororadiologist cleared me to fly as soon as I felt ready to. No memorable headache after the first flight.
As for food, you just survived a hemorrhage, carbs and sugar all the way!

*The best piece of advice I can give is, be kind to yourself.

Be well Danielle and best wishes for a thorough recovery, Jaime

Hi Danielle,

My AVM was asymptomatic and did not bleed. You can read my profile for the back story if you’re bored.

I had a crainiotomy on June 17, 1993, age 32, as the surgeons went prospecting in my posterior medial right parietal lobe. I had just qualified for the Ironman in Hawaii in 1991 so, like you, I was in peak physical condition.

The docs advised to take it easy for a while. Screw that, I’m not the take it easy type, I too was very frustrated for the first 4-5 months as even the simplest of tasks-like walking-rendered me very tired. So for the first couple of months I forced myself to take it, my version, of easy.

Be patient. I wasn’t fully recovered for about 18 months.

I was not able to resume racing at the pre-AVM surgery level, largely due to the neck injury sustained in the head-on collision that led to the discovery of the AVM just by a stroke of luck. I have however remained very active: hiking, mountain biking, skiing, and other outdoor fun.

Recovery is agonizingly slow. Patience and persistence are the keys. Exercise those two disciplines, and you will get there.
Thousands of us out here who have endured precisely what you are enduring right now. We’re here to help. Reach out.

Hope this helps.


Hi Danielle,

I felt compelled to respond to your post as your story resonates with my experience in October 2015. I too spent a few days slowly feeling worse and being diagnosed with a potential migraine before I found myself in an ER. I was diagnosed with the same AVM as you and had similar treatment. I remained in hospital for a week post Craniotomy. I understand everyone has different experiences and have answered your questions as best I can based on my personal experience.

  1. I took Phenytoin but was removed when I left hospital. I was told I was not able to drive for 3 months due to concerns about seizures. I don’t recall any side effects from the medication. But then again I doubt I would have been able to pick them up as who knows when you have such a big experience what is a side effect from a drug, operation or neuro repair. As yet I have not experienced any seizures.
  2. The first few months for me are now a bit of a blur. I recall starting to feel a bit “normal” again around the 6th or 7th month mark. I made myself exercise, even though I was quickly worn out, as I felt it really helped my regain clarity or mind. I remember the day I chose to run from my house to work (about 4km’s). My work colleagues were somewhat concerned. I had done some rehab work with a physiotherapist who was happy for me to exercise as normal as long as I understood for a while I would not be able to do what I was use to. For my age I was quite active before the AVM ruptured and I still am. Just a bit slower.
  3. My operation was in late October, I flew interstate to visit my brother in early January. I cant recall being told I couldn’t fly. I specifically asked my Neuro Surgeon a question about my ability in the future to hike at high altitudes. He didn’t have concerns. 12 months on my wife and I celebrated my recovery by spending 4 weeks with our 2 children enjoying the sites if the eastern states of the USA. We flew 24 hours from Sydney to Orlando and back from New York. No problems with flying.
  4. My check up was scheduled for 12 months. I had another MRI scan and the results were positive. My specialist says I am AVM free.
  5. I can’t remember thinking any food made me feel better than others. When I first came home from hospital I remember not enjoying sugary foods and caffeine. I stuck to a healthy diet. I lost quite a bit of weight when I was in hospital but my appetite returned.

I too am grateful to be alive and healthy. I try to enjoy each day. I have certainly focused on the “little things as one day you may realize they are the big things” (Robert Brault). This most rung true with me the day, after 3 months, I was able to drive a car. My 8 year old daughter looked at me, patted my head gently and said “Your better now Daddy. Its like nothing ever happened. If you can drive you are still normal”. I could see the impact the experience had on her.

I hope I have helped in some way. Stay well and strong Danielle and learn all you can from “His marvelous blessing in disguise”.