Quantcast

AVM Survivors Network

New here, one of the lucky ones (knock on wood)

Hey everyone, I’m Keith and wanted to say “hi”. I feel bad posting my story because mine is short and there are so many people here going through long and tough journeys but maybe my story can give hope to someone.

My AVM was diagnosed in November after having a seizure. At least that’s what everyone thinks happened, no one witnessed it. I was visiting friends in Barcelona and on the morning I was to go home for Thanksgiving I woke up in massive pain with a posterior shoulder dislocation. After returning home to CA and reading and thinking more and looking at the bite marks on my tongue, I self diagnosed my seizure and went to my doc. From there it went from CT scan to MRI to the first neurologist and then was referred to Dr Steinberg at Stanford in about three days. I am very lucky to be in the backyard of some great treatment options, I live about 20 mins away.

Mine was small at 1cm but high blood flow in the temporal lobe but in a “safe” spot. They recommended 1, maybe 2 embolizations and then the craniotomy to remove it. The doctors mentioned there were some people and papers that stated it could be left but recommended removing it. Had 2 embolizations the first two weeks of December and then the crani on the 3rd week. Recovery went fairly well but was painful and scary at times, only very small side affects at this point. I’ve been able to return to some of my favorite hobbies including snowboarding and playing ice hockey. I know I am very lucky and try to appreciate it daily.

Fortune Mag was doing a piece on virtual reality and my doctor’s use of it as a both a teaching and surgery tool. My doc volunteered me to be a part of the accompanying video, figured some might be interested to see technology mixed with AVMs.

The seizure part fascinates me.

I think I had been having “absentee” seizures for up to a decade and they had increased in intensity and frequency. Some really weird stuff and it fascinates me and I want to learn more about it here and hear about other peoples experiences. I had been starting to discuss it more with people but I ranged from thinking it was something like runners high, to psychedelic flashbacks, to self-taught and unintentional transcendental meditation. It all sounds stupid when I see it written. Ironically, I told the friends I was staying with in Barcelona about it days before what I think was my first and only tonic clonic seizure. If there are any threads or topics discussing it here, pointers are welcome, I haven’t yet found any.

1 Like

Welcome Keith, and thanks for sharing that. It is awesome, I enjoyed it immensely. Great to hear of your positive outcome! Never feel bad about telling us a positive outcome, everyone here will be happy for you. I personally love hearing of success! Great to hear about your hockey playing! My son is winding up a hockey camp today and I still lace 'em up for a couple fun tourneys a year. Again welcome and Thanks! Take Care, John

Keith,

Welcome to the site! Never feel the need to apologise for your story seeming “less” than others’. We all worry about what we’ve got and the options for treatment, so in some ways I think we all go through the same mill.

Very best wishes

Richard

Keith,

This is a great share!

VR prep for surgery looks great! To see something in 3D rather than it have to be only 2D must be a fantastic tool for a neurosurgeon! And you got to look into your own brain!! That’s a bit of a rare thing, too!

I wont tell you the level of imagery or information sharing I got pre or post surgery! I’m quite jealous!

Great share. Thanks,

Richard

@holleman Hello Glad you made it back home !
I am also a Stanford patient but I see Dr Michael Marks.
I also was having seizures I would say I don’t feel good I am going home at work and next thing I know 2 hrs has gone by…
I first had a rare stroke due to 5 blood clots in my brain and went into a coma and had a massive stroke.
Then about six months later they found my AVM .
I see the head of stroke at Stanford at first he said I could not have 2 rare brain things but now they know that DAVF are common with CVST.
I still have mine they can’t do anything more without possibly causing paralysis so we are just watching it.
I have always wanted to ice skate and play hockey but it really makes my family nervous.
Dr. Steinberg is heading the clinical trials for stems in the brain for stroke and TBI for paralysis. Hopefully it gets fast tracked by the FDA.
Angela

Hi , interested how your craniotomy went,I had two lots of embolization,and now due a craniotomy to prevent a bleed,it’s at the back of my head ,a davf, have to lay on my front which can cause more problems apparently,how long were you in hospital for,and the pain after op,you can be honest!! Wishing you well xx

@Angela4 - Small world, you are so close! I can understand your family’s nervousness about ice skating, it can be a tricky thing to pick up later than life. And it’s super slippery and super hard and painful when ya come down.

1 Like

hi @Castle - sounds like we have had a similar path. I also had two embolizations and then the craniotomy. However I had to read up on DAVFs to understand them. After the two embolizations I went home the next day after both of those, about a 24 hour stay in total. The craniotomy was a two day stay.

I’d say it was uncomfortable but pain-wise not really too much worse than the embolizations. The wound healed quickly and I never really even felt anything else. Sleeping was hard because I had dislocated shoulder on one side and a big head wound on the other side. I was scared about people cutting into my melon though, it made me real uneasy.

The really difficult part for me was that they went through above my ear, cut through the temporalis muscle, and the surgery affected the trigeminal nerve. Had problems eating and chewing, nerve damage in the face, but the worst was really bad double vision. Had to wear an eye patch for almost a month until my sight returned. It was scary, I wasn’t really prepared for that before surgery. The nerve damage is still there but much less. Hot and cold liquids in my mouth I can still feel on the top of my head. I have been told it might heal by the end of the year but it might not. Likely what you have 9 months out is what you will be stuck with.

Sleeping on your front sounds tricky, hopefully you can get by on your side some. Good luck, when is surgery?

2 Likes

Hi @holleman it’s nice to read your story and so happy all turned out well for you. My story is very similar as I had a grand mal seizure that lead to finding my AVM in my left frontal lobe. I as well went through one pre op embolization and a craniotomy to remove it since it was my best option because of it’s high risk of rupture. I’ve never heard of absentee seizures but I’ll have to look into it because I’ve lived alone for so long there’s a chance I was having ones prior in my sleep I wasn’t aware of. Thankfully I wasn’t alone when I had the seizure that started my journey. I’m now 1 year post op and doing really well. My recovery has been pretty smooth, no major deficits either. Of course it’s been challenging but I feel good. I wanted to ask you…does you doc have you on seizure meds and did they tell you how long post op you’ll have to stay on? I’ve been on Keppra now for 14 months (500mg twice a day) and I was told I have to be on for 2 years post op to be safe. I’m hoping to wean off sooner because I hate the way it makes my thoughts and moods change sometimes, among other things. I have an excellent team at USC and my neurosurgeon was impeccable. But Id love to hear what Dr. Steinberg has gone over with you about your recovery and meds (if any) since our stories and recovery are so similar. Happy healing.

Hi thankyou for getting back so quick,it’s due in two weeks time, they did say they wouldn’t be cutting into the muscle that affects my eating,it is nearer the back ,I’m dreading it,and also not been able to drive for 6 months they said x

@shannonm - Glad to hear you are doing well and yes, our story is kind of similar. Funny timing for asking this. I was also on 500mg of Keppra twice daily for 6 months post-op. I did a 6-week taper off of it starting June and finished mid July. Was really excited to get off of it. About a week or two after being done and off of it, I had 5 small focal seizures within a one week period towards the end of July. I sat on it for a while until people close to me convinced me it was best to at least reach out. When I reached out to the nursing staff, they talked to Dr Steinberg and I was immediately put back on the Keppra and referred to a neurologist at Stanford that specializes in epilepsy. No surprise, his diagnosis 10 days ago was that those were focal aware seizures and that I do have a mild-form of epilepsy caused by the AVM. I have a planned backpacking trip coming up in November in Patagonia that I really want to make. His recommendation was to stay on the meds for the next 4 months to get past the trip, have a year post-surgery, and then maybe try another taper or switch meds. But do this with the expectation that having to be on meds for the rest of my life is the most likely outcome. There were other things to test and tweak like vitamin B and D.

It’s interesting, it seems some docs say 2 years, some say 1 year, and Dr Steinberg let me try 6 months but as soon as something happened I got put back on. I’m sure some is a case-by-case basis or it might be personal perference and legal/liability. I like and respect the aggressiveness to try to get off. I’m sure for his liability, the instant I mentioned something putting me back on is easiest.

I was anxious to get off because I’m generally adverse to medications (for a number of reasons) and was having anger, frustration, depression which is on the long list of side effects of the Keppra. But I also have a bunch of other things going in my personal life contributing to that including a family member dealing with health issues and addiction and a failing marriage. The month off of Keppra for me convinced me that the feelings I have are not due to the meds but general life drama and situations that I’m dealing with.

Sorry, a little long winded. Hopefully that helps!

1 Like

Thank you for responding! I’m sorry to hear about the focal seizures once they tapered you off, I can imagine that was a little scary. When is your 1 year post op? At the same time, your story with the Keppra made my negative emotions towards having to stay on longer a little bit better. I started seeing an epileptoligist (spelling) right after surgery in the same neuro clinic as my surgeon at USC. I’ve had 3 EEG’s to continue monitoring my brain activity and they’ve all been normal. I think the reason they decided on the 2 year post op for me is because I drive constantly all day for my job and it’s riskier to taper off sooner in the event I do have another seizure. Personally, I don’t think I will, but my 1 year post op MRI showed the brain scarring from the crani which that itself can cause seizures from what I was told. Thankfully, my AVM is still gone and all my tests went well for my 1 year! My groins aren’t happy with the 4 angiograms I’ve had this past year but we have to see the brighter side that were still alive, right? :relieved: Sometimes I get the same emotions with feeling down and like I can cry at any moment and I’m thinking it’s Keppra related? But possibly just from the surgery itself too. My only issue thus far (besides the mood swings ugh) was a few debilitating migraines that are stress induced I’ve dealt with since the surgery(had none before).

To circle back to the Keppra and seizures…it’s affirming for me that I should stay on as suggested by my doc even though my soon to be husband and I would like to try to get pregnant next year. I was told it’s safer to stay on the drug during pregnancy than taper off before since another seizure could do serious damage. I’m still trying to wrap my head around that and I’ve been devastated at the thought of taking this drug while pregnant. I plan to speak to more specialists that work with women on Keppra but I just hope I can find a way around it.

Your video was awesome by the way, I’m a little jealous you were able to experience the VR with your AVM. I’m in medical sales and love being in the OR and would have loved to see my AVM up close and personal.

I truly hope things continue to get better for you on the health and personal front. My thoughts are with you there!