Who isn’t guilty of using Google as their go-to source to solve all their problems from a hangnail to checking if you have cancer? You aren’t alone; I am guilty expending my time googling what afflicts me. Google is helpful especially when you have a clinical diagnosis and want to search for information to comprehend the conventional “what is it?”, “what are the expectations?”, and “what to execute?”. I screamed at my phone several times because there was a deficit of information on my type of stroke-SAH because it’s rare. Furthermore, I was frustrated that Google dispatched me to medical articles and excluded (not 100%) the human response which I was desperately searching for. I will cover the human factor in another post, but I ran a search on my phone of my google history from April to Feb. You can see how many times I frantically wanted to understand what I was going through. At the end of the list I will explain what triggered these searches. Below contains, my actual search and websites I came across (not listed, but you can tell which are professional by the title). Disclaimer: Seek medical advice from a medical professional. This is my journey which required me talking to an expert. I want to normalize concerns, but I can’t solve them.
March and April are more detailed why I googled certain subjects. For February, since it was a blur, I won’t go into detail because it’s self-explanatory.
Top 10 Best Medical Alert systems
Subarachnoid Hemorrhage| Neurology
Patient Care| Columbia University Department of Neurology
Post stroke brain
Trauma and PTS
Psychologist that specialize in stroke near me
The Anxiety Center
Stroke Center| Overland Park Regional Medical Center
Normal post SAH recovery issues
Living Well After Surviving a Subarachnoid Hemorrhage
Consequences and coping strategies after subarachnoid hemorrhage
Subarachnoid hemorrhage recovery stories
Recovery of Cognitive Function after Surgery
Uncovering stroke’s psychological impact
Signs and Symptoms of Psychological Trauma
Mental Changes and Effects of Stroke
Understanding the Mental and Emotional Effects of Stroke
Post-Stroke Rehabilitation Fact Sheet
Life after subarachnoid hemorrhage
Subarachnoid hemorrhage treated with clipping: long-term effect
Physical Changes- Brain Aneurysm Foundation
Aneurysmal Subarachnoid Hemorrhage
Cerebral Vasospasm After Subarachnoid Hemorrhage
Googled- Craniotomy, Craniotomy: What to expect at Home, Craniectomy: Life on Hold, Post Craniotomy Headache, Why Do Healing Wounds Itch, Persistent Low-Grade Fever, Brain and Spine Foundation, When will the numbness of my head after Brain Surgery go away, Numbness and Tingling after surgery, Myoclonus Fact Sheet, Post-Stroke movement disorders
Reason: Post-surgery and lucid, I wanted to investigate the detail of my craniotomy. While looking, I remembered my recovery has challenging, so I googled almost everything known to man. I only have a few snippets on this list. I did this to make sure it was normal, but of course, as I have advised, check with your neurosurgeon. She was able to answer all my concerns.
Googled- Part of the Brain involved in Memory
Reason: My memory is foggy. I can be very sharp and then decrease to nothing. I’ve learned my long-term memory is intact but my short-term is struggling. I was curious if this was permanent or if things would recover. From what I gather it’s a long process. My neurosurgeon assured me this is normal, but I forgot to ask her how long. I will update everyone with my next appointment. At this moment, I apologize to everyone that I’m not spacing conversations, but I’m trying to retrieve the memory.
Googled- Brain Aneurysm Patient Stories| UI Health, Patient Story: Subarachnoid Hemorrhage and Hydrocephalus
Reason: I need to know how other people in a similar position were recovering.
Googled- Cerebrospinal Fluid Leak, Hydrocephalus after stroke, Hydrocephalus and the Benefits and Risks of Shunt Therapy, Brain shunt surgery risks, Brain stent procedure recovery, Ventriculoperitoneal (VP) Shunt Overview, Ventriculoperitoneal Shunt: Procedure, Adult-onset Hydrocephalus, Brain shunt surgery risks, Beaumont Health| Brain Shunt
Reason: After My CT scan and news from my neurosurgeon that I had hydrocephalus that required surgery, I went to town looking this up. This was completely foreign to me. I was going to have a life-long drain placed in my head? It was going to travel all the way down to my abdomen. How was this done? I googled the heck out of this, and it gave me great information, however I felt a panic attack swarming across me. My neurosurgeon on the day of the surgery was so graceful and compassionate explaining the procedure to me and why I needed it. Apparently, she went over this the day before, but my memory was wiped out- hence the need for the shunt. I always recommend hearing from a doctor first or have them write it down if your memory is not good. These surgeries, like mine can be done rather quick, so there isn’t enough pamphlet information to give out in a hurry. To be honest folks, the week after my surgery, my neurosurgeon had to explain it over again to me and how they inserted the shunt. I shiver. Fear not! This all sounds so scary, but this shunt saved me. I can walk, talk and became my old self again.
Googled- VP shunt failure symptoms in adults, Shunt failure symptoms in adults, Signs and Symptoms of complications of shunt, Detecting shunt failure in hydrocephalus, Is my shunt working, I have a VP shunt and it hurts to move, Right Lower Quadrant Abdominal Pain, Shunt revision
Reason: After my surgery, I felt a lot of complications. My abdomen was aching, my head hurt, I was running a low fever. I didn’t know if I was having a malfunction. I googled all these websites and I matched them all. I panicked and called my neurosurgeon (again) and they had me come in. My doctor told me that I was experiencing normal recovery, and my temp was nothing to fret. She took the bandage off my head and said it looked beautiful. She further explained that the swelling in my head went down so much, that’s why I can feel the shunt more. She took the bandage off my abdomen and said it looked perfect. This my friends, is why you reach out to a professional. It’s good to be aware of what to look for and not completely in the closet, but don’t break a sweat until a doctor clears you. It’s normal with our psyche to find reason. When it comes to medical, our psyche can only handle the what-if and not the final answer.
Googled- VP support group, VP Shunt- NeuroTalk Support Groups, 1st time VP shunt- NeuroTalk Support groups
Reason: I thought I would have better luck finding a support group for VP shunt than I did for SAH. I came across an abundant of support groups. I would recommend looking at Facebook too and type in VP shunt. I found the most helpful and caring group. Remember, their journey is not yours. Don’t take too much of what’s said, that will replicate to your own recovery. Also, don’t give medical advice. Give helpful tips that are benign, but most of all give all your love and support. Basically, we all share having a shunt and no one will understand us better than the group. I also stumble across a group dedicated to SAH based in the UK. It’s interesting to contrast the medical care between the two. They are a gracious group that has accepted me with open arms.
Googled- Opioid and Opiate Withdrawal: Symptoms, Opioid withdrawal: Symptoms,
Reason: I finished my painkillers mid-March and felt sick. Sweating, irritable, wanting to throw things around. I was a monster. As I wiped my tears and gathered myself, I began to look at opiate withdrawal. I matched these symptoms. There isn’t much that can be done about this, but I called my neurosurgeon to verify what I found, and they agreed. My only course was to deal with it. That’s right, deal with it! I know it sounds hard, but there isn’t a medication made for everything. I had been pumped full of pain medications since Jan mixed with other opiates. It’s rather hard to switch from that to nothing. I was smart and began weaning myself off slowly as I noticed my prescriptions were running low. I’m happy to say that it only took two days to stabilize. Disclaimer: coming off any opioid can be dangerous. DON’T do this on your own. Consult with your physician first. I had already talked to my doctor weeks prior about weaning off. What I googled, was to assure myself that I was indeed going through what was expected.
Googled- Inspirational quotes
Reason: Quotes give me an extra dose of push that I need
Googled- Sleep Hygiene, Hydrocephalus and Sleep quality
Reason: My sleep has been and continues to decline. I’ve posted on sleep on another section that has helped tremendously.
Googled- Fioricet and Klonopin reactions
Reason: After finishing my pain killers, I resumed Klonopin that I take for my POTS disorder. It helps my overactive autonomic system and essential for daily life. After taking my timed doses a couple hours I did not feel well. I called my pharmacist and explained my medications change and asked their recommendation. I won’t publish what it was because, I don’t want to be responsible for someone else doing the same. We are all different with how long we have been on certain medications, along with other medications that I did not mention, and body weight. Best advice- use your pharmacist.
Googled- Shunt Malfunctions, Hydrocephalus- Complications, Complications of Shunt Systems
Reason: Convinced I was having one, however I took proper action and called my neurosurgeon for assistance. Never self-diagnose yourself.
Overall, my google searches have gone down with panic mode and now filled with joy. Things do take a turn, and the turn is a rebirth of who you are now.