Hey everyone! I’ve just joined this group and am looking forward to connecting with other AVM people. I’m a 36 year-old woman living in the Bay Area. I have a 4.5 yo little girl and a wonderfully supportive partner and family. While reading a book midday on Dec 15 of 2020 I suffered a hemorrhagic stroke (parenchymal hemorrhage) from a ruptured AVM. I had no idea what was happening and for a couple hours just assumed I was experiencing a migraine (I have never had one so I didn’t know what to think). As things progressed it was obvious I needed emergency care. My local hospital was not equipped to handle my situation so I was transferred to Stanford the evening of the 15th. At first, it was difficult for the Stanford team to identify the cause of the hemorrhage but thankfully after a couple days in the ICU and many images later the AVM was identified. They found a complex, micro AVM posterior to my large hematoma in the parieto-occipital region of my brain. On Dec 23rd I had a craniotomy to evacuate the hematoma and obliterate the AVM. I did it all by myself because this occurred during California’s big old COVID surge. It’s really hitting me know how truly wild it was to be alone the entire time. I am now just 4+ weeks post-op and have not yet had my follow-up angio to confirm that the surgery was 100% successful, but my surgeon was pretty confident that they obliterated the AVM fully. I was discharged on Christmas day (what a gift!) and have been working through my rehabilitation ever since. I’m really just beginning this journey and am starting to realize, as of this week, that this will be a long road. The lasting effects I’m experiencing are a lower right visual field cut (basically no right side peripheral vision) and some vestibular-occular integration issues along with sensory integration challenges. Then of course there’s just the cognitive fatigue and reduced cognitive endurance. I’m interested to hear others’ experiences who are similar to mine and what I can expect moving ahead in the recovery process. This is a life changer for sure and I feel so much gratitude each day to feel the sun on my face, play with my kid (when I can) and take in the little moments that I might have previously taken for granted. Thanks to everyone who makes this community possible! Looking forward to getting to know y’all.
Welcome to our wonderful but quirky group. I can honestly say that if I didn’t have this group, there were times I’m not sure I would have made it.
Can I inquire where in the Bay Area you are? My brother spent 12 years in Sacramento and we’d head down to the bay pretty much every time we were there. There’s a saying in Michigan, “Don’t like the weather, wait 10 minutes, it will change.” In Sacremento, my brother said it was, "If you don’t like the weather, wait 6 months, it will change…
I’m afraid I don’t have an answers for you. The only thing I can offer is what my Dr. at Mayo Clinic told us - if anyone tells you their AVM is gone, the odds of them being right are very very slim. I am a case for that (42 years already).
I do have a question for you -
Do you or anyone else here have any solid and very credible sources where I could find out more about them. From the little that I’ve been able to find most of it either is not reliable or so confusing that I would have better luck speaking, oh one of the tribal languages back in the rainforest in South America,
Thanks in advance and keep in touch,
Since you started with “Hi, I’m new here!” I think I’m going to end with "Hi, I’m old here!
Welcome! Sounds like you’re doing really well this soon after your bleed and craniotomy. Recovery os often slow going for sure, and often difficult to remember that forward is forward! I had an AVM in my left temporal that I learned I had in 2016 when it bleed. I had gamma knife and got the obliteration result in February 2019. Just had a two year MRI and awaiting results. I can only imagine how difficult with the COVID situation and being alone, it just adds another dimension to fear and unknown. Great you’re here with us, and lucky to be in the Bay area! I’m looking out at snow falling and a forecast tonight of -25 Celsius before the windchill. Take Care, John.
Good to have you here with us
This definitely is a life changer for all of us & I think that’s an understatement.
I don’t have much to add, but like mentioned above - after being diagnosed with an AVM & having brain surgery nothing certain. . . It’s a lot to live with at times, yet it gives life a whole new meaning - has to me at least
I was very fortunate to have “just” an embolization - but, I would say there are some similarities - it will get better with time. The first month for me was a very rough time to say the least. But, now I would consider my current condition normal - I just passed six months post my brain bleed/hemorrhage
This community has been an amazing asset to my recovery - also, like merl mentioned - I don’t know if I would have made it or where I would have made it to without it
Nothing but prayers and GL from me to you
Welcome @savanna I am also in the Bayarea and also being treated at Stanford. If you need any help navigating let me. I am thinking you had Dr Gary Steinberg for your surgery he is the best. Then for your angiogram ask for Dr Michael Marks he is the founder and head of neuro radiology.
if you are doing out patient pt at the redwood city Stanford ask for Gretchen Leff and tell her I said hello she is awesome and used to dealing sensory and cognitive issues she also has a phd. She put up with my swearing ( which has been proven helps with the pain) and would rethink when certain exercises were an issue and actually figured out I had another serious issue ( Thoratic Outlet Syndrome ) I cant say enough good things about her
Prior to my AVM which is a rare one called a DAVF I had a rare stroke due to five blood clots in my brain and ended up in a coma and had to relearn to walk talk etc.
I am happy to meet for coffee tea etc or chat on the phone zoom etc I know this is very scary and no matter what no one can really understand unless they have been through it. @DickD thanks for the ping
Hi @TJ127 , thanks for the welcome! I am in the East Bay, on an island called Alameda which is basically Oakland. Your brother is pretty right about the weather, although where we’re at is really even milder than Sacto! RE: the vestibular-occular issues. I don’t have a further source for you but I’ll give you the best explanation here I can. Basically I’m having some motion sickness when I spin around/change directions with my body too quickly. It often presents like I’m on a boat and is amplified when I am physically more tired (after a longer walk, etc). My PT said it’s essentially an issue with my brain getting a bit mixed up when trying to integrate what I take in visually with my proprioception (understanding of my body in space). Similarly, I was having (these have mostly resolved) issues with over stimulation because my brain was struggling to integrate all the sensory inputs. Hope that helps! Again, thanks for welcoming me to this community. So happy to have found y’all.
Jeez you’ve been through the mill! I had a similar bleed and outcome to you (occipital-parietal), except my AVM is high risk for surgery so I’ve had gamma knife and am 18 months in to a 3-5 year wait. I can’t imagine having no one at the hospital, that must have been tough. I remember needing a lot of reassurance from visitors that ‘I was still me’. I’ve also lost some peripheral (left) but a modest amount, I can still drive. I did find that I was bumping into stuff frequently at first but that seems to be improving, I guess I turn my head more. In terms of rehab for visual loss I was told by my neurosurgeon that the lost vision won’t return as it’s caused by cell death. What I’ve read validates that, and there’s been no change since the bleed. I was also told to expect some subtle changes which I doubted at the time as I felt pretty good, but have noticed some very minor and sometimes bizarre little ‘quirks / deficits’ mainly related to visual memory (where I tested poorly in neurology VS ‘exceptional’ verbal memory) and some patterns seem to mess with my head. An example is that I seem to have become far worse at using Google maps. As soon as I look away I can’t remember the map clearly. I’ve also become momentarily disoriented driving close to my home a few times, all on the same road within 1k of where I’ve lived for 40 years! Very odd and I know it’s related to the bleed but it’s so minor in relation to what many here have had. Listen, take it easy on yourself…and your brain! Your brain has had two major insults, the bleed and the surgery. It absolutely takes a year or more just to let things settle down. In retrospect I was not quite myself for a year or so, but can honestly say I’m fine now. Avoid stress. I share your ‘thankfullness’ that we are lucky to be alive. Lucky lucky lucky!!! Take your time to acclimatise to the new reality and use this place for support and shared experiences. I’ve found it scary, but also inspirational and very helpful.
All the best
@Indalo thank you so much for this encouraging message. This was the wildest experience I have ever had and certainly could ever imagine having! I actually think I know exactly what you’re talking about re: visual memory. I definitely will get turned around in my own city, just like you, a place I know extremely well. So many of these various deficits are just unveiling themselves over these past few weeks so I’m so curious to see if I have the same experience as you’ve had. Thanks for sharing and I appreciate your affirmation about giving myself time. I have really come to accept that fact and it’s so valuable to hear others in this community reiterating the patience and time healing takes.
My AVM was in the occipital lobe area and was pumping into my transverse sinus. It was making a whooshing sound past my ears (which is how I discovered it) but it was also sufficiently high flow to effectively pump blood the “wrong way” along some of what would otherwise be tributary veins connected to the transverse sinus, perhaps the sagittal sinus, perhaps the straight sinus. Anyway, one of my symptoms was the weirdness when moving my head. I used to say that walking or driving/being driven was mildly unpleasant.
Post op, the weirdness carried on for quite some time but it faded eventually. My doc did do a bit of a check-up about a year post op but concluded that I really needed to just get used to the new pressures in both the arteries and the veins in the affected area.
You’re still early days, honestly.
Very best wishes,
Hey Savanna! I’m glad you got your AVM obliterated, although I am sorry you had your bleed. I’m a 21 year old psychology student from the Bay Area too, San Francisco to be exactly. They discovered my AVM by accident but instead of transferring me to Stanford when they found it, they transferred me to UCSF. I got 2 gamma knife radiations in 2019 so I’m just waiting 2-3 years for my results to come back. The brain has plasticity and it’s awesome what it can accomplish. Although perhaps you won’t be 100% back to normal after your surgery, over time you usually get pretty close to it (90-95%). I’m wishing you a speedy recovery as well!
I am a SF Bay Area resident, too. My journey with a ruptured posterior fossa (cerebellar) AMV started 27 years ago. Congratulations on finding this site. It is a valuable resource.
First, it sounds like you are recovering at an optimum pace. Your intellect and written expression are clearly intact! (Are you in the medical field?) You have a plan of action, too.
A few items in your statement stood out to me. 1) cognitive fatigue and endurance, 2) “motion sickness” with turning or change of body direction, and 3) “overstimulation”. The motion sickness to which you refer did not result in vomiting, but I had to stop whatever I was doing to allow my head to settle. It also occurred at bedtime. I learned to turn slowly and support my neck/head in a slightly flexed position.
Overstimulation was more of what I refer to as “overload”. It is if my brain cannot handle multiple sensory stimuli at one time. Very uncomfortable feeling. I also had to turn the volume of music or television down.
I indeed appreciate the everyday things, as I would guess the great majority of us do. As I say often, concentrate on what you CAN do and you’ll notice tiny changes that build over time.
Hi @savanna I’m sorry to hear about your situation but at the same time happy you are doing so well… kudos to you for the bravery going through this alone during Covid as I had also had surgery after a bleed & without the support of my wife & family not sure how I would of coped… keep up the positive attitude & get that angio done to get that last 100% tick they got it all… it’s such a scary experience but once you start to recovery you definitely have a different outlook on life… God bless!
Welcome to the site! I had a right Occipital/ Parietal avm rupture… it’s a long slow road but there is light at the end of the tunnel.