I wanted to ask the forum about resources and perspectives they have used to cope with long-term post-surgical cognitive changes. I would like to learn what has helped others remain positive and hopeful. I thought I would also share things that have helped me over the last two years; I have already been asked for this information by multiple people, so I thought I should post it. This should probably be a new topic but I am not authorized.
The 'What you can expect after surgery' pamphlet stated that the patient might experience short-term memory loss, which as it turns out does not mean ‘short-term/temporary loss of memory’ but ‘possible permanent damage to short-term memory’. I was told my cognitive problems would dissipate with time, but later was told, maybe not. Newman showed that after five years long-term cognitive decline was experienced by 42% of cardiac patients
http://www.ncbi.nlm.nih.gov/pubmed/11172175.
An article by Wang is a good jumping off point for people to discuss risks and preventive steps with their surgeon or cardiologist, Postoperative Cognitive Dysfunction: Current Developments in Mechanism and Prevention
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4206478
There are at least three things going on at the same time, which make it difficult to deconstruct and understand cognitive change:
1. The brain injury
2. The surgical insult, manipulation of the heart in particular
3. Adaptation to a 'new' heart, specifically cerebral blood pressure regulation
Several cognitive issues were immediately obvious to me post-surgery. The crippling anxiety was gone, leaving me with eerie silence in my head. I had a strange abundance of oxygen. And I could neither feel nor hear my heart beating. It turns out that people who hear their hearts are different from those that do not. It turns out there is a not too often mentioned role of the heart in cognition.
http://www.bbc.com/future/story/20141205-the-man-with-two-hearts
The post-surgical referral process takes persistence:
One month after surgery I asked my primary medical provider for a neuropsychological test (4 hrs); she performed a Mini-mental status exam (MMSE) (10 min). Cardiac rehab started at almost two months, where I realized I could not remember any instructions. I went back to work two months post-surgery. My cognitive/emotional stress became more of a problem as I recovered from the surgery, and my provider recommended antidepressants. I serially tried four of the standard medications, the side-effects to each being intolerable. I was referred to a psychiatrist who suggested that a brain injury may be the issue. She ordered the neuropsychological test and referred me to a neurologic physiatrist (9 months post-surgery). He ordered a CAT scan to ensure I had not had a major stroke. He recommended exercise, Tai Chi, light social interaction, dietary supplements and probiotics, acupuncture, afternoon naps, and meditation. He referred me to an ophthalmologist because I was having difficulty processing visual information. He referred me to a speech therapist who usually works with people who have had strokes (12 months post-surgery), and the speech therapist helped me distinguish what cognitive abilities I had lost. She helped me to stop comparing myself to who I had been before, and helped me let go of that person. Physical therapy stressed tests showed that my blood pressure increased to 250/157 with light elliptical machine exercise; seated bicycling was ok. It took me about a year to get the referrals I needed.
What is short-term memory loss mean?
I strain to compile information in a way that helps make sense of the world. Short-term or working memory is the compiler, and if the compiler is too small, context is easily lost. My most vivid post-surgery memory was looking at a tree, which looked to me almost two-dimensional, as if it were a drawing by a child on a white background.
Reading is difficult. When I look at text, I see only letters. I have lost whole word recognition and struggle with acronyms. I have trouble following speech when proper nouns are not repeatedly used; pronouns are hard.
I carry ear-plugs and sunglasses because of sensitivity to light and noise. I try to avoid busy highway driving. I become exhausted by mental strain. I find I can loosen that knot with humor, naps and meditation. Dopamine triggers vasodilation and reduces vascular inflammation.
Diet:
Although they appear to help with the stress and fatigue, the foods to avoid (alcohol, caffeine, salty foods, sweets/refined sugars) accelerate neurological decline. The link below has reasonable dietary advice for people with TBIs but does not replace a dietician.
http://www.brainline.org/content/20...brain-nutritional-tips-to-speed-recovery.html
Dietary supplements are not all good or equivalent, but I have found the following helps manage stress and inflammation:
Probiotics
Tinctures of hawthorne and lemon balm
Curcumin/Tumeric
Unsweetened electrolyte drinks
Brain injury resources:
Brain injuries are all different but the best literature I can find in terms of treatment relates to post-concussion syndrome (PCS). Where rest and cognitive adaptation used to be advised, it is recognized that deconditioning may lead to symptoms of depression. The second link below (Leddy et al) "Concussion is associated with metabolic and physiological changes in the brain and in other organ systems (for example, autonomic function of the heart and altered cerebral autoregulation, sleep, and circadian rhythms). We propose that PCS results from ongoing central and systemic physiologic regulatory dysfunction after traumatic brain injury (TBI) and we further propose that this physiologic dysfunction may be reduced or alleviated by individualized controlled sub-symptom threshold aerobic exercise rehabilitation"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3784364/
http://www.ncbi.nlm.nih.gov/pubmed/17917170
Michael Ellis wrote a good summary article in Brain Injury "Physiological, vesticulo-ocular and cervicogenic post-concussion disorders: An evidence-based classification system with directions for treatment" 2015. It emphasizes the importance of sub-threshold aerobic exercise treatment to improve cerebral blood flow. The article discusses associated vision problems, but Brainline has an easier to read article:
http://www.brainline.org/content/2011/03/vision-and-rehabilitation-after-brain-trauma-part-1-.html
or at the Neuro-Optometric Rehabilitation Assoc (NORA):
https://nora.cc/
(under Patients)
Support of brain injured:
TBI Consumer Report: Coping with Post-TBI Emotional Distress
http://www.brainline.org/content/20...ping-post-tbi-emotional-distress_pageall.html
Cognitive rehabilitation article at the Brain Injury Resource Center
http://www.headinjury.com/rehabcognitive.html
Traumatic Brain Injury Survival Guide
http://www.tbiguide.com/
Mild cognitive impairment: Tips for living well with memory/cognitive impairment
http://alzonline.phhp.ufl.edu/en/reading/mciarticle.pdf
Spiritual Care handbook on PTSD/TBI, US Navy. The stages through which patients move as they heal are articulated in the handbook
http://www.militaryconnection.com/assets/pdf/Spiritual Care PTSD Handbook.pdf