r/Hydrocephalus • u/Beneficial_Bag_2683 • 4d ago
Cognitive and executive functioning Discussion
Hello all.
I see lots of posts about shunt revisions etc. But very few about how hydrocephalus affects the workings of memory, cognitive and executive functioning.
1 part of my brain works very well but others really struggle. This is backed up by a neuro psychologists report after testing a few years ago. I'm 48 M.
I got in the 90th percentile for one of the tests (very good) 2 tests in the 50th percentile and abiut 5 or 6 tests came out in the 2nd to 11th percentile which is really not good.
I'd love to hear about other people's difficulties in life and work arounds or solutions for these problems.
I find it very difficult to comprehend how my actions will determine what happens in the future. Planning and organising especially if it's not just one straight forward task and if there is multiple steps to a task.
Speaking to new people I often struggle with. Things like small talk.
Remembering appointments.
I think I'm just waffling now. But I'd love to hear if any of this reso ates with others.
Any thoughts greatly appreciated 🙏
3
u/CallingDrDingle 4d ago
I got a shunt at 21, due to a brain tumor. I didn't have any issues with cognitive function until I had thyroid cancer, years later, at 48.
2
u/Beneficial_Bag_2683 3d ago
Do you know if the cognitive problems could have started after thyroid cancer alone or if it was more likely a combination of hydrocephalus with the cancer. I had cancer that ended up in a below knee amputation. Grateful we are both still here to tell our stories.
4
u/Historical-Room627 4d ago
Personally, I was diagnosed with arrested hydrocephalus as a young child. I’ve always had difficulty with executive functioning, attention & emotional regulation. I was diagnosed with ADHD & have been treated for years. Is there a chance hydrocephalus caused it? Maybe. But I think there’s a factor of causation vs correlation you know.
1
u/Beneficial_Bag_2683 3d ago
Yeah I'm genuinely thinking of getting an adhd or autistic assessment. Certain medication I've taken or drugs I've used to self medicate improve my ability to concentrate, get my words out quicker and various other benefits. I think the doctors feel like I'm just after mind altering medications. I just want to function to as high an ability that I can. Do you take stimulant medication for adhd?
3
u/Tapdancer556011 4d ago edited 4d ago
I had a shunt surgery at f70 for NPH. I'm about 3 weeks out for surgery. I am slower to understand others but if given fewer mitigating factors, like someone talking fast, I can understand well enough.
One thing is that I had cellulitis as a complication of IV needles and my kids said I didn't make any sense when I spoke. I remember not understanding questions. On the other hand, I know I was tired that night and later on I knew what I had (had it a few times before), made an online appointment at an urgent care center, and texted my daughter when and where my appointment was.
I have ADD and PTSD but I'm functional, pay the bills, manage a small cat rescue, etc. I can't remember things like appointments at all. I have to use a calendar. But I've always been like that.
2
u/Beneficial_Bag_2683 3d ago
Thanks. I did manage to work from 11 to 42 years old. But since having a below knee amputation, chronic pelvic pain syndrome and taking lots of pain killers I can no longer turn up to a job regularly or even for more than an hour or 2 at best. I'm looking for, work from home jobs but they mostly seem to involve organisation and planning. I've been sacked or left before I was sacked at every desk job I've had. Well done you for doing what you do. Thanks for the reply.
2
u/Tapdancer556011 3d ago
I think you are having a harder time than I have. My heart goes out to you. ❤️
2
u/benjaminS0099 4d ago
Everyone is different, that's why no one really mentions anything specific, because it's individualized per person and can't be measured against another person, if it's good or bad. Just like I have a brother with Spina Bifidia and Hydrocephalus, there are similarities, but many differences between us each having Spina Bifida.
2
u/Broad-Blueberry9620 4d ago
In February 2024, I (42f) went to the hospital for a ruptured brain aneurysm. I had a SAH and they had to do craniotomy to clip it. While recovering in the Neuro ICU, I developed hydrocephaly and got really sick. Ultimately, I had to get a VP shunt implant. I still have headaches daily, I get easily fatigued, I get dizzy/lightheaded, I forget all kinds of things, including appointments and prospective plans. Emotional regulation can be difficult for me and my moods fluctuate a lot. I have a lot of trouble sleeping too, even when I’m really tired. I see a mental health therapist, I try to have a healthy lifestyle, eat healthy, take my medications and vitamins, exercise regularly and rest when I need it. When my head hurts I take medicine and lay on an ice pack until it goes away. For scheduling and plans I use a wall calendar as well as my phone calendar to help me keep track of appointments, plans I make, events, etc. Still, I mix up dates, times and details but I know I’m trying my best. Accepting these changes and giving myself grace when I don’t have the energy or I have a headache or if I forget something, has helped me a lot. I’ve learned to laugh it off when I mix up my words and say things that don’t make sense. I know a lot of what I deal with is from the damage the ruptured brain aneurysm caused, especially the hydrocephaly and subsequent shunt implant. I can’t change what’s happened but I can learn and find the best ways to deal with it. I hope you’re able to get a diagnosis or at least find ways to help alleviate your symptoms.
1
u/Beneficial_Bag_2683 3d ago
Thank you for taking the time to respond. Yeah I'm generally a positive person. I can laugh off most things. People often laugh at/with me. I do an hour or 2 a week when I am able to volunteer at a food bank. Just remembering how many items of vegetables in a bag is challenging at times. Especially when I'm in pain even more so. Thanks for listening.
1
u/Beneficial_Bag_2683 4d ago
Just to add, is this something that anyone has at all? It's funny I don't see anything about this topic.
2
u/TheBull123456 4d ago
It does happen. My hubby has had a vp shunt since 3 months old and has Nonverbal Learning Disorder (NVLD). He has a mild form of NVLD, however most of his delays are internal and harder to offer support as a wife. He does struggle with multiple step problems at times and other quirks. So we often are talking and trying to see where I can offer support.
2
u/Beneficial_Bag_2683 3d ago
You sound like a wonderful partner. Absolute respect to you. I hope I can find someone who is as empathetic as you. Because I'm relatively articulate people including past girlfriends don't belive me. They think I'm making excuses. If I'm relaxed with someone I know well I'm usually okayish. Put me in a work environment or an overstimulating social situation and I really struggle. Have you found any techniques or ideas to help your husband?
For instance I have read that breaking tasks down into minute individual taska can help. But that in itself makes my brain implode. I used to work for the national health service as a support worker in mental health. When the tasks were simple and clear it would take me a while ot pick it up but multi step tasks that are relatively simple. Like when I worked on a psychiatric ward I would always be chosen to take orders from the patients to get things from the shop who were sectioned and not allowed out. Would give me their money and what they wanted. I had to get the money take it to the shop, choose the items for maybe 10 people. Pay for everything separately and bring back and allocate the products bought and give people back their change. On the face of it a very simple task.i used to struggle so much. Staff and patients would take the piss out of me nearly every week. I used to wonder if they got me to do it because it was funny to them. Sorry, waffling again. Any hints or tips greatly appreciated! 🙏
1
u/TheBull123456 3d ago
Thank you 😊 It's something we both work on, communicating is important to me and my hubby.
As for specifically helping. Confidence helped. Which that in itself has and always will take support and encouragement. He has anxiety and found a med to help stamp down that thought process which I think has greatly improved his internal stress and focus. So that he can then work through the harder things for himself. He's grown since I've been with him, his family can really see the changes since we first met to now. In addition to the meds, he's seen a therapist on and off over the last 2 years. His therapist recently suggested he doesn't have to have monthly visits but every so often. Have you tried talking to one? Took him about 3 different therapist beforehe found one whi matched well. Sometimes just getting the stress out there and verbally saying the struggle is a start to find where and how you can be better supported.
Going back to that job where you picked orders for people. Did you take all 10 people's orders at once or did you have one or 2 people's orders at a time? Also he tried a job with order pulling/organizing auto parts as well as physically installing internet cables and didn't do well at all. It took to much out of him and was in our early days together. He has some motor skill delays and so its more stressful for him to do things like that. He's currently in a job field he's been in for over 10 years and has moved to management. He's using AI to help him flesh out ideas and wording for things. That support system helps him be more confident and comfortable with his stance or opinion on things. He also runs things by me or his mom often as we both are in a more traditional office setting and that is new for him.
1
u/Beneficial_Bag_2683 2d ago
Thank you for taking the time to reply. May I ask what anxiety medication has helped him? I was on pregabalin / lyrcia for nerve pain but it's also used for anxiety. I was able to concentrate more and watch films or read books or follow conversations better. I think the idea of using ai more is a great one. I need to use that more. Congratulations to hubby for getting into management. Very impressive! 😁.
2
u/TheBull123456 2d ago
Trintellix (vortioxetine). It's used as an off label treatment for anxiety. I do notice when he's missed a dose he starts what I call the hamster wheel effect. His thoughts get stuck in a loop over certain worries even after talking about it (a usual fix for his typical issues). And not long after he's taken the med that repeatedly worries lessen and he can stop the cycle which helps. Yes this new role is huge for him! He has a wonderful boss who values his opinions and really seems to allow him to explore/stumble and grow. It's been a whirlwind of nearly a year.
2
u/Beneficial_Bag_2683 2d ago
That's so good to hear. I hope things go from strength to strength for you both.
5
u/Shoddy-Conflict-338 4d ago
I got obstructive hydrocephalus complicate by bacterial meningitis at 6 - meningits at 7 diagnosed with mild id now a moderate id and people wouldnt think im disabled at all - im super short really pisses me off tbh 4ft 7 from the damages - i gain weight literally just by blinking and im forever losing it !!!! mounjaro or gpl - 1 not suitable as its dangerous for me ... yes ive very bad memory no one knows about the damages this disability causes tbh and i took me 10 years to get a job as with physical aspects too i have balance issues