I’ve not sat down to write about the events of the past year and a half, and appreciate a forum to do so.
I’m a 58 year old single mom and grandmother of 6 who has always been physically active and for the past 10 years a competitive ballroom dancer. I consider myself to be very healthy, except for being diagnosed with high blood pressure about 5 years ago. Controlled with medication.
In the late summer of 2017 I noticed that I was having some double vision. It was worst when I looked up, something you commonly do when dancing smooth or Standard. I saw an eye doctor in September who noted the double vision and sent me on my way. The double vision became more pronounced when I was tired. In October we were at a dance competition and I was tired after dancing all day. One of my fellow dancers is a doctor. She looked at me briefly and suggested I see my PCP and have a head CT. My PCP agreed and scheduled me for an MRI. On 11/2/17 I was diagnosed with a cerebral aneurysm and sent home to await a call from the specialist.
I went home and packed an over night bag, expecting that I would be heading off to the hospital right away. I had never had any type of surgery and I was afraid what this meant for me. A good friend, another dancer, had experienced a brain bleed a few years earlier and spent 6 weeks in intensive care. She had recovered and was back dancing so I held this close as I awaited my next steps. When the call finally came they said that they had an appointment for me to see the neurosurgeon next Thursday. What? A week away…well apparently I wasn’t going to die.
It was hard to wait a week to learn any more about my fate. I did not search the Internet for information because I didn’t even know what I was facing and I didn’t need to scare myself any further. I reached out to my family and let my close friends know what was happening. I was reluctant to tell many people because I knew that some (my son) would be very afraid and I didn’t have any information to share. It was hard to balance my need for support without wanting to over burden those who cared for me. We didn’t tell my grandchildren about my surgery until just before my scheduled date.
The first neurosurgeon discussed options and after an angiogram they confirmed that open brain surgery was not an option due to the location of the aneurysm. We scheduled another appointment with another surgeon and I was sent off with instructions not to worry and enjoy my life.
I realized that I was going to need to figure out how to deal with the waiting around, something I hate. For years meditation has come up as something I should really try…so it seemed like now was the time. I began to use guided meditation to help keep me focused on the moment and relax. I regularly used a white light healing meditation before going to sleep. It helped immensely to keep me focused and relaxed. I swear that it also is the reason that I did not experience the pain they said I would while the aneurysm was ‘clotting off’.
On Dec. 21, 2017 I had a PED and Coil placed to address an unruptured large cavernous fusiform aneurysm measuring 22.1 mm x
22.3mm x 15.1mm. in my right ophthalmic artery. This was my first surgery and my only stay in a hospital other than to have a baby! My brother was there and my lovely dance friend, who had survived the brain bleed, held my hand while they placed the EEG leads on my head before the procedure. The MRI post procedure showed that I has experienced two small strokes during the procedure but otherwise came through with flying colors! I remember being VERY tired the first day and wanted only to keep the warm cloth over my eyes and sleep. The second day I was up and walking. I spent 2 days in ICU and 1 more in the regular unit before being released home on Christmas Eve.
Three weeks after my surgery I participated in a ballroom dance competition, because they said I could! It was certainly not my best but dang it I was dancing!!!
In the first 6 months I had times where I felt very emotional and am grateful there were days I could work from home when I returned to work. Sometimes I would cry and had no reason why, but I just let myself do so. I took advantage of the employee assistance plan through my employer and several times found a sympathetic counselor at the end of the line who would listen to me cry and help me understand what was going on. My emotional bouts have calmed down, but I do find that I prefer to be alone a bit more than before. I’m a knitter as well and this was something I would often do before surgery because looking down seemed to take the pressure off my eye. This is something I still do after a long day or a day full of visual stimulation.
It’s been over a year now. I still have visual issues and double vision, my right pupil is less responsive than the left and my ability to focus quickly is compromised. I occasionally have optic migraines (but thankfully no pain) that last about 10 minutes. I’ve seen a vascular ophthalmologist and have a follow up visit in a month. I do find that I still tire fairly easily with more strenuous activity (yard work) and I need to sleep more than I did before. I try not to focus too much on these limitations because I can see, knit and dance!
I’m not exactly the same person I was before the surgery - - not sure I can explain it any better than that. My dance family has been with me the whole way and my instructor helps me when I’m struggling to learn something…I’m not impaired, just different.
I think the thing that I struggle with the most post procedure is that I look normal, like nothing happened or is different. However, it has been difficult when the people around me expect me to be at the same performance level I was pre-procedure (and I expect me to be the same), but I’m not. I have a pretty demanding job and when it’s busy…there’s no getting around it… the work needs to get done.
I continue the use my meditation, though not as frequently, and work to focus on the positive things around me. I try to cut myself plenty of slack and give myself permission to take a nap when I’m tired and realize that I can do much of what I used to but sometimes I have to approach it in a different way or take a little more time. I appreciate this forum to allow me the reminder that while I have no outward scars for visible impairment, this was a big deal! I’m likely still healing and adjusting to the stuff they put inside my head. The aneurysm is gone as of my 6 month follow up.
So I’m going with my neurosurgeon’s initial directive to go out and enjoy my life!
Thank you for letting me share my story.