Where's the Info!

Does anyone else suffer from Google fatigue searching for information? I have this problem with VP shunt life expectations for adults. I found a ton of articles centered around pediatrics and infants, but nothing earth shattering in respect to adults.  As someone who is creeping around 40 with a VP shunt, I have a lot of questions about expectations in the coming months and years. The only information on the web for our age group contained surgery information and recovery and malfunction warnings.  This is great knowledge to know, but what about after? Are there activities to avoid? What about the airport? I’ve seen a couple articles that are mixed about going through the airport security with your device, and I’m not sure who is credible because neither website gives off that reassurance that they have proper knowledge. I know that it’s our responsibility as patients to ask our neurosurgeons what we need to avoid, but it’s hard to gather these thoughts in a single visit when the information continues to snowball my head sporadically.  So, when I travel are there certain activities I need to avoid? I know contact sports, white water rafting or anything that could throw you off causing a potential head injury is a no. That’s basic knowledge. It would be beneficial or a bonus for someone with authority to make a list beyond recovery to guide VP adults on the can and can’t dos.  

My neurosurgeon told me that I will be able to live a normal life by summer. Does that mean I’m free to do anything? Aside from that, that only thing that I’ve been told I can’t do is place my head directly under a shower head. That gives me pause that this can’t be the only thing I avoid. 

Furthermore, how about a detailed malfunction list. It reads off like Dr. Google, where it lists so many items that could correlate with another issue.  It would be nice to see more of a definition of each problem, and the degree of which a patient should worry.  Most articles will state call your neurosurgeon, but we can’t flood their day with each potential ailment that comes up.  If something was more defined, that may help assist someone if they need to contact their neurosurgeon. I understand the problem, however.  These articles don’t want the responsibility of a patient letting their guard down and feel that they have a safety pad. A disclaimer would suffice, stating that if you are experiencing these issues, please contact your physician, however, here are some helpful guidelines. 

Another area of improvement- what to expect after recovery.  I’ve noticed changes that I was not expecting. There is nothing out there that really explains these changes, but journals written by doctors that are filled with data and it’s too much to swift through.  I want to know, is it normal for someone to have bloating near their abdominal incision and how long does that last? Instead I can only come up with pseudocysts, which I doubt I have.  At this point my only resource is Facebook support groups to voice my concern and have assurance from them that this is normal for them too. Is that enough? Do they feel satisfied with this feeling too? 

What about dull headaches? How long do these persist? Is this ongoing or does this come in waves? Is it an indicator that things are steering in the wrong direction or part of the SAH stroke life?  My other concern that I have mentioned repeatedly is sleep. A kind person gave me a link about SAH fatigue from the UK that outlines that yes, I will have fatigue for the rest of my life.  It seems to me that the UK has more things outlined for adults than the United States.  I found this with my POTS disorder as well.  I was able to learn more about my condition from the UK than the lack of resources from the United States. 

If there is nothing out there because life indeed is normal, then I wish reputable clinic would state it. I’m not alone on this issue, and more people need access to life after VP shunt or life after SAH stroke (though there is more information regarding that).  If anyone can find me this information, I would greatly appreciate it. If not, my next visit with my neurosurgeon, I will ask her if the information is out there and post the information. 

The bottom line is that with any crisis, a person wants to understand the outlook of their life. It’s in our nature to prepare for what is uncomfortable or that need for reassurance.  Blogs like myself can’t be the answer tool for people. It can serve as sample, but not each person is alike. 

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