Brain Aneurysm Survivor, 2 Year Anniversary!

General
1

Today marks the day, 2 years ago, I was diagnosed with a Giant Widemouth Cerebral Aneurysm, measuring 27mm in my Left Internal Carotid Artery (ICA) of the Cavernous Sinus (C4) Segment of my brain. My life was saved by three doctors of whom I will never be able to thank enough, my first cousin, Dr. Robert Storment, an Optomostrist, Wichita, KS, Dr. George, an Opthamolgist at Sakowitz Eye Center, Orange City, FL, and my Neurosurgeon, Dr. Michael Bellew, Orlando, FL, trained in Vascular Neurosurgery and Endovascular Surgical Neuroradiology. I was diagnosed admitted to the hospital, and went into surgery all within 48 hours. The aneurysm was treated with a PED, (Pipeline Embolization Device) which is a non-invasive procedure used to treat Giant Widemouth Brain Aneurysms in this particular part of the brain.

Two years ago, my life changed drastically. Although lucky enough to survive at all, or without major handicaps, the aneurysm caused optic nerve damage (Optic Neuropathy) to my left eye which resulted in permanent vision loss, facial nerve damage, balance problems, sensitivity to light, flooding of the brain, chronic fatigue, etc.

Basically, once your brain has been touched, it's never the same. I started to really begin to recover about one year after the event. I would love to say I almost feel back to normal after two years, but as I sit here I notice my face is numb and am constantly reminded I will never be like I used to be. This really is my new normal and maybe at some point it will become unnoticeable.

I was lucky. I have two young children and a husband and I was saved. I was put off by doctors for years and had become to think I was a hypochondriac. Don't be afraid to fight because you could be very well fighting for your life.

I wanted to share this celebratory day with the BAF support group, as I really depended on you during my darkest days of recovery. Thanks to all of you for sharing your stories and making each one of us feel less alone in our own experiences with the recovery, care for others and loss of loved ones from brain aneurysms.

2

Hi Dasis, congrats on your 2 year anniversary and, welcome to the PED group. That is quite possibly the largest aneurysm from the members of our PED group! I don’t recall, in the four years since I started this group, that any have been larger.

I personally just celebrated my 4 year PED placement "Annie"Versary this past June! My Lord, sometimes when I say it out loud, I cannot believe it’s been that long! My PEDs were placed a mere 5 weeks after the FDA gave the PED approval for use here in the U.S. in April, 2011. My PEDs were placed after an emergency attempt at a coiling in May, 2011 failed, due to the wide neck of my right-sided annie. I was put on a regimen of aspirin and Plavix, sent home for 10 days to get my platelets at the correct levels, and then the PEDs were placed. My left-sided Annie is being watched, and as of my last MRA, still no growth!

We have a few members from across the globe who have had their PEDS a little longer than mine (our own Giovanni, who is in Italy and I believe just celebrated 5 years this past January!), and a few members who received compassionate use approvals from the FDA, prior to their approval. We also have some who had PEDs placed in the MCA and some in the basilar tip. So we’ve got quite an array of PED recipients! I am truly amazed at the ways that the PED, and the new PED Flex, are being used. Especially in an area of the brain outside the ICA, where the PED was originally manufactured for.

I was wondering, as you mentioned you went from diagnosis to surgery in 48 hours, why did you not have the 10-day platelet therapy? I hadn’t read anywhere that the therapy was no longer being used as the norm, but if it is now the case, I like to keep our group informed!

Again, welcome to the group! Please feel free to post anything on our front wall, as well as read some of the great articles and survivor stories we have collected over the years.

Congrats on your 2 year anniversary!
Linda

3

Thank you for the fantastic welcome and sharing your story with me. Yes, it was quite large. I started having severe migraines when I was 9 years old, was treated a prescription and once I discovered ibuprofen, I took my daily dose of 3-4 a day and I could manage so I just kind of forgot about it. My neurosurgeon told me I fell into the 3 percentile for size, location, and age (41 at the time). It's likely I was either born with it or had it since my youth. I really had no idea there was a 10-day platelet therapy. I think the reason the surgery was so soon is because I was losing my vision in my left eye and they were trying to save it. I was misdiagnosed by my first visit to the eye doctor so I went 3 weeks with my vision rapidly declining. They actually scheduled my surgery for a Sunday and we all know how the hospital is staffed on the weekends. They used two PED's, one smaller than the other and slipped the smaller one through the bigger one to make it stronger. Apparently the manufacturer (people that make the PED) came down to observe the procedure because of its nature. I was in the emergency room on a Friday night with my MRI scans, the imaging technician told me which hospitals to go to with the right technology, doctors, and equipment for my situation and called my husband and sent me straight to the hospital after the MRI was completed with my images in hand. The hospital I chose, without really knowing outside of the referral, specialized in this area so I couldn't have picked a better place to be. I was admitted, had an angiogram on Saturday and surgery scheduled for Sunday. I had an incredibly rough recovery. Was put on a very high dose of steroids for several months, blood thinners, narcotics, etc. I had to learn how to walk a straight line, had physical and occupational therapy, and treated for PTSD. I know it's not the worst outcome, obviously, but it was hard. Hardest thing I've ever had to work myself through. And I still am foggy a lot of days, overly tired, not quite balanced, not quite 'there' if you catch my drift. I've been thinking about going to see a neurologist to see if I can get any help. Maybe I should post this question to the group. Thanks so much again for your response and congrats on your 4 years!

Linda Z. said:

Hi Dasis, congrats on your 2 year anniversary and, welcome to the PED group. That is quite possibly the largest aneurysm from the members of our PED group! I don't recall, in the four years since I started this group, that any have been larger.

I personally just celebrated my 4 year PED placement "Annie"Versary this past June! My Lord, sometimes when I say it out loud, I cannot believe it's been that long! My PEDs were placed a mere 5 weeks after the FDA gave the PED approval for use here in the U.S. in April, 2011. My PEDs were placed after an emergency attempt at a coiling in May, 2011 failed, due to the wide neck of my right-sided annie. I was put on a regimen of aspirin and Plavix, sent home for 10 days to get my platelets at the correct levels, and then the PEDs were placed. My left-sided Annie is being watched, and as of my last MRA, still no growth!

We have a few members from across the globe who have had their PEDS a little longer than mine (our own Giovanni, who is in Italy and I believe just celebrated 5 years this past January!), and a few members who received compassionate use approvals from the FDA, prior to their approval. We also have some who had PEDs placed in the MCA and some in the basilar tip. So we've got quite an array of PED recipients! I am truly amazed at the ways that the PED, and the new PED Flex, are being used. Especially in an area of the brain outside the ICA, where the PED was originally manufactured for.

I was wondering, as you mentioned you went from diagnosis to surgery in 48 hours, why did you not have the 10-day platelet therapy? I hadn't read anywhere that the therapy was no longer being used as the norm, but if it is now the case, I like to keep our group informed!

Again, welcome to the group! Please feel free to post anything on our front wall, as well as read some of the great articles and survivor stories we have collected over the years.

Congrats on your 2 year anniversary!
Linda