It has been a while since I posted on here, however, I wanted to share my updated story to hopefully bring encouragement despite everyone’s unique situation. To briefly recap: I was diagnosed with a left occipital lobe AVM January 2018 after my first hemorraghic stroke and 5 days in the hosiptal. I was left with a small blind spot in my right, central field of vision. After much discussion with my neurosurgeon, research, prayer, and thought, I decided to just wait and watch my AVM through annual MRI’s rather than craniotomy which posed 50% risk to becoming legally blind. My neurosurgeon was on board because he assured me that, while another bleed would be worse than the first, it would not be life threatening. I cherished being able to see my children grow into the young adults they have become. The waiting game did give me a measure of anxiety with every bad or weird headache. My husband and I would talk and discuss right away about my symptoms and watch them to see if I needed to go to the ER or not…for five years. My last MRI in July 2023 showed my AVM unchanged and stable.
On October 19, 2023 I happened to be visiting an older friend in the hospital who was recovering from surgery. I was feeling really good that day, hadn’t had a headache in several weeks. I was happy to be helping someone else after being the recipient of help for so long. I wasn’t there 30 minutes when I felt a strong and fast headache come on. Then I got physically ill, needing to use the bathroom and then vomiting. I knew this was it. I managed to excuse myself from my friend without letting on what was happening so as not to worry her. I first called my husband to let him know what was going on, immediately he headed to the hospital I was at. Then I walked to the nurse’s station and said I am here visiting a friend, but I think I am having a hemorraghic stroke from a left occipital lobe AVM. I had 3 nurses immediately surround me and they sat me in a wheelchair and rushed me down to the ER part of the hospital. A CT confirmed I was, indeed, having another hemorraghic stroke. At this point I was starting to loose my right peripheral vision. I remember thinking to myself that’s ok, I can still see, I can still see. Since my neurosurgeon is located in a different hospital I was transported via ambulance with my husband following. Somewhere in this process my vision cleared up. The bleed had leaked from the occipital lobe over into the ventricle system, thus relieving pressure off the occipital lobe and not damaging my vision! However, that put me at risk for encephalitis and was borderline needing a drain. I was watched carefully overnight and fortunately I did not develop encephalitis. The next morning my neurosurgeon performed a successful embolization and watched my AVM disappear! He feels confident that I am no longer at risk for any more bleeds. After day 4 I was released from the hospital. What I was not prepared for was the immense back pain I experienced for 1.5 weeks. The ventricles create the fluid that washes the brain as well as the spinal fluid. Since my bleed leaked over into the ventricles, blood particles were washed down my spine firing all of my spinal nerves. However, I kept telling myself, I will take this temporary back pain verses permanent vision loss! Even though the 2nd bleed was worse than the first, I walked away with no further deficits to my vision or anywhere else and I am experiencing a much faster recovery than the first time. I will have a follow up angiogram in the next few months to confirm that the AVM did not form new branches.
Wow! What a ride! Really glad to know you’ve got through two bleeds and seem to be ok! I know that stories of survival like yours are the light at the end of the tunnel for many people struck by a bleed, so it is always helpful to share your bit of a rollercoaster and the start of the calmer glide back towards normality.
I hope it all proves fixed in that follow-up scan: my doc was similarly convinced he had embolized everything needed first time and confirmed it again in the follow-up.
Very best wishes for 2024!
Richard
Thank you for sharing gives the rest of us some hope
What a coincidence that you were at the hospital the time it happened! Someone’s watching over you❤️
Thank you!
Yes it really was an amazing coincidence, talk about being in the right place at the right time!
Thank you for your sharing! Your story has so many similarities to what I went through, so it gives me hope. I have three bleeds so far thank God they were relatively minor so I got to come out of the hospitals every time. I hope one day my AVM can also completely disappear and I can share the same encouragement as what you have done here.
I hope so, too!! One day at a time.
This is so wonderful to hear! I had a hemorrhagic stroke in 2017 after having had gamma knife surgery in 2014 and encouraging scans after. While my AVM was in the right frontal lobe, the bleeding occurred primarily into the ventricles. The doctors said this was very lucky and I essentially made a full recovery after a monthlong critical care/rehab hospitalization. I had such a backache! No one at the time connected that to ventricular bleeding (as far as I can remember…) so these 6 years later, your experience is validating mine- very impressed by your courage, attitude, and generous sharing of your experience. Continued health to you!
Wow, you have quite the experience as well! I am glad you got validation to what you experienced. I tactfully told my Neurosurgeon PA that there is not enough preparation for the patient on what to expect after being discharged from the hospital. She admitted that is something they need to work on and she did not prepare me on expecting that type of back pain because they usually only see that in patients who had an aneurysm. It boils down to the fact that the brain is so complex and the experience is so individualized that it is hard for the doctors to know what we will experience, they are treating the symptoms as they see it. That is why this forum is so helpful!
Interesting story with a good outcome. I had an AVM, right parietal occipital and in 1993 decided to have it removed at Colombia Presbyterian in NYC after a few scares. After a series of 3 embolizations, the AVM was removed in a 12-hour operation. The surgery went smoothly but in recovery, I fell off the bed as the nurse had neglected to secure the side rail. I developed a subdermal hematoma and flat-lined during the procedure to remove it. Next was a month of rehab, learning how to walk again, and now 25 years later you would never know I had the surgery!
Your story is very interesting as well. Amazing how our diagnosis, effects, and treatment differ and are unique for each person. Very happy to hear of your recovery!!