I have been somewhat vague about the outcome of my assessment in the rehabilitation ward in hospital. Now that we are home and I have a better idea of what I am dealing with, I feel able to write about it.
The surgery itself appears successful and was without incident, for which I am incredibly grateful. I have dissolvable stitches rather than staples and Dr. Harding managed to save most of my fringe (which is great given I had no idea the incision would go all the way to my forehead!).
I have not suffered any injury related to a bleed or incident during surgery but the effect of having surgery on my brain has left me with a significant escalation of my prior stroke deficits. These deficits can recur at times when I am unwell or have been overdoing things and it is easy to understand why they would reappear now. Admittedly, going in, I wasn’t thinking of this as a potential consequence because there were so many other scarier ones to ponder. I have however been disappointed to see just how poorly the left side of my body is working. Some of the tests for hand movement produced results similar to the function I had in the first year after the stroke.
It was due to this increase in deficits that I was transferred to the rehabilitation ward.
Once the physiotherapists started getting me up for walks and testing my balance, I quickly became aware that all was not quite as it had been prior to the operation. After further assessment by the Speech Pathologists and Occupational Therapist, I knew what I was facing.
The entire left side is affected including my face and mouth, affecting speech, chewing and swallowing food. My hand is weaker and the fingers are curling and over-gripping items and when used for a continuous period, they curl up and become useless. My arm needs to be consciously moved first thing in the morning or it just hangs there doing nothing. My leg fatigues easily and I need to concentrate to stop my knee from snapping back in an uncontrolled manner with each step, while the foot turns inward and the toes curl up whenever I attempt something ‘strenuous’. I am also very sensitive to noise and simply cannot concentrate if a TV is on or there is some other persistent noise.
One deciding factor for Dr. Harding as to which side to approach the aneurysm, was that I already had a stroke affected side thus if any brain damage were to occurred during the op, it would be preferable for it to affect my already affected side; thus the right-sided approach. This was a sound decision to my mind prior and remains so now. No damage occurred during surgery but my brain has experienced a trauma and as a result, I have an escalation in the severity of the previous stroke related problems.
Once the physios begin working with me, they also identify a significant issue with balance (umm, actually, I probably did that myself when I realised I couldn’t stand up without nearly falling over!). My brain’s vestibular* system is not working properly (another stroke legacy, as are my proprioception deficits. I had a brainstem stroke which causes more ‘global’ impacts upon the brain.). This makes me unsteady on my feet, incredibly dizzy and frequently nauseous. The physios soon work out that they need to be holding a spew bag whenever they have me doing head moving exercises. I will concede it has been amusing to see how fast they can move once I start retching! I tease them thusly, “Ah, Physios, they talk big and like to push people’s limits but hate being vomited on.”
Lastly, I am sent to the Ophthalmologist (eye doctor) to check my vision, as it hasn’t improved as everyone said it would. Initially my surgeon said the double vision I am experiencing was likely due to bruising to the eye muscles from when they drilled through the skull close by. At the two-week mark there has been no improvement and I still have to wear a patch over my eye to enable me to see normally. Without the patch, I quickly become disoriented and dizzy whenever I move or look around too much.
The Rehabilitation Physician decides as a precaution to have my eyes looked at because my limited vision is impacting my ability to walk and exercise freely. One lunch time I am escorted out of the hospital and walk over to the Specialists Centre next door. I sit in the waiting room in a posh building, feeling somewhat self-conscious about the bright pink slippers adorning my feet, but soon forget the slippers as a man near me attempts to whisper to his female companion, “Look, she’s got a big scar on her head.” Awesome. I silently urge the eye doc to call me in.
Soon enough I am in the doctor’s office having been taken through some preliminary vision checks and she is now covering and uncovering one eye and studying the movements of my eyes. Without pretense, she tells me I have “What we call, fourth nerve palsy.” She then proceeds to explain in detail what she suspects may have happened and the recovery process.
The fourth nerve is a very thin cranial nerve and it could have been stretched or affected in some way inadvertently during surgery. If this is the case, it could take 4 to 6 month to recover. If it doesn’t recover in that time, they can give me special ‘prism’ glasses to help with the double vision and if at the 12 month mark it is still a problem, they will recommend surgery to fix it. A bit stunned, I ask her to please write the name of it down for me.
The doctor then schedules a follow-up appointment in 2 days time to fully assess my visual field. These tests show I have lost some of the peripheral vision in the right eye. I will not be allowed to drive until all symptoms have resolved. The Ophthalmologist also now thinks the third and sixth nerves are somewhat compromised and she hopes it is from swelling post-op and that my vision will improve as the swelling resolves.
In the meantime, I have to wear the patch and I can leave it on the right eye as this is the weak eye and trying to force it work too much is counterproductive. She also tells me that it won’t weaken the eye. Lastly, she tells me I probably will not be able to read for longer than 10 minutes at a time and may want to give it up for a little while, as it may become a source of frustration. She’s right!
I also then have an assessment with people from the Guide Dog Association arranged by the OT at rehab. They go through elaborate testing that mostly replicates the results of the Ophthalmologist but with less skill and accuracy. I found the entire thing to be mostly a waste of time. I had been expecting some assistance in mobility and how to navigate the world with half my usual vision but did not receive anything other than, “Have someone with you when you go walking.” Only later do I learn that the second person present during the assessment was a mobility officer. This person said nothing the entire time they were with me. I’m still a bit cranky about it! They did however give me exercises to strengthen the eye with the warning they would be challenging and are likely to bring on migraines.
So I came away from all the testing and assessment feeling somewhat deflated. The eye thing took me completely by surprise and when I finally told Jase about it, I burst into tears. I felt overwhelmed again as the list of deficits kept growing but the loss (even temporarily) of my vision was hugely distressing. Jason for his part was rock solid and told me without hesitation that it would be the swelling and once that went away my eye would be back to normal. I clung to his words as though they were a life raft in the sea of my fears. I have since come to believe this for myself as my vision has begun incremental improvements.
I eventually decide whilst still in hospital that I’m not going to worry too much about it all because: a) I am recovering from brain surgery and have been really unwell; b) I need to put my energy into recovery; c) I have the opportunity for rehab support; and lastly, d) I have recovered from most of these things before and if I have to, will again.
The extent of my ‘deficits’ may surprise anyone who has seen me in the last few weeks and it reminds me that when I had the stroke, I worked hard to remedy those aspects that were most noticeable and developed the habit of ‘hiding’ my deficits. I became experienced at adapting around them to the point that even health professionals couldn’t tell how greatly impacted I was without undertaking an assessment. This helped me in my recovery to a point and has apparently become an ingrained habit. Hiding however, hasn’t helped me get the support I need and I have been overlooked in the past for rehab because I appeared to be managing so well. I know I am a perfectionist and an A-type personality and those things give me the drive and determination to succeed but they sometimes also prevent me from acknowledging how much of a load I am carrying. Thus I share this with you now. The surgery went fine but it has left me with some work to do.
*The body maintains balance with sensory information from three systems: vision, proprioception (touch sensors in the feet, trunk, and spine) and vestibular system (inner ear). Sensory input from these three systems is integrated and processed by the brainstem. In response, feedback messages are sent to the eyes to help maintain steady vision and to the muscles to help maintain posture and balance.
See more at: http://vestibular.org/node/2#sthash.Swf7v1lF.dpuf