Is there anyone else that has became super forgetful, crying on and off all day, self isolating, getting lost where I’ve lived 50 years? Is this normal? I’ve been tested by a neuropsychologist who said no dementia. I’m lost
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Hey Teresa,
My name is Merl from the Modsupport Team and Yes, I’ve been there too.
My memory, which used to be one of my better assets, up and vanished. Conversations I had yesterday I forget, then I repeat, repeat and repeat myself again. Other’s find it frustrating, but that’s nowhere near as frustrating as I find it all. I’ve found it’s easier to self isolate at times, I can’t offend if I keep my mouth shut. I’ve often sarcastically joked with my wife “There’s nothing wrong with my memory… …but who are you again?” and although it is said as a joke, it’s also very real. I now have to write myself lists of tasks to remind myself. If someone asks me to do something, the minute I turn away, poof, and it’s gone. This is all very foreign to me. I want the old me back.
Emotionally, ohh boy, what a mess, I’m all over the place. Some days I can get on with life, but some days I want to fall in a heap. I can have times of such clarity, it’s amazing. But then have times I’m lucky to remember my own name. I’ve tried to explain this to others, and I get these blank looks, they have no idea. This all adds to my stress and ‘my cup, it overfloweth’.
Only yesterday I had a rather emotional upheaval (family) and the person involved received the WHOLE contents of my cup, Ohh very messy, with every expletive known to man and this morning I awoke with a headache from hell. My fault, I did it to myself and I should have known the outcome. I know I can offend without even trying. I ‘try’ to choose my words VERY carefully so as not to offend, but yesterday my filter, it vanished. It had to be said, but now I feel guilty for being so direct. It’s easier if I just keep my mouth shut, I can’t offend if I don’t say anything. So, I’ll crawl back under my rock and stay there. It’s safer for everybody that way (me included).
I too have had the medicos point at ‘early on-set dementia’, but the psych disagrees, suggesting it might just be stress related. I can’t think why I’m stressed 
.
Is this normal? you ask. And my theory (and it is only MY theory, not a medicos) is that they have altered our brain’s, they have altered the flow of fluid and disturbed the microfine neurocircuitries within our skull. There simply must be flow on effects from this. I’ve often compared neurosurgery to opening your computer box and throwing in a handful of aluminium foil flakes. If you did that, your computer would have short circuits all over the place and that’s if it ever worked properly again. Because every one of us is individual and wired in our own unique way, they cannot say ‘exactly’ the outcome, despite them professing otherwise. We have to learn to manage the best way we can for ourselves. And if ANYBODY ever tells you that is easy, they have never been in this position themselves.
But I can assure you, you are not the only one. In other words ‘Me too’.
Merl from the Modsupport Team.
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I have memory issues as well. I was a bit of an emotional wreck for quite a while but not so much crying. I would get depressed for no reason, which is totally out of character for me. The moodiness is finally levelling off but my memory issues persist. After every angiogram I feel the effects, but the endovascular surgeries (I’ve had 3) seem to be the worst. I saw a youtube presentation that indicated it can be around a year for it to clear. I’m sure that can be variable. All I know is so far I haven’t gone a year without surgery so i can’t attest to it. I’ll try to find the link and post it later. Meanwhile I can say with positivity that my brain does not respond well to anesthesia, or to people fishing around in it and disturbing the statis quo. I’ve begun to accept it as my new normal and have just found ways to cope as well as possible.
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Found it:
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Oh my yes! Each and every angiogram set me back, the more I had the farther set back I’d go and would take me longer to get back to where I was. It was so bad that my Neurosurgeon said she needed to give me a longer break. For me, the stent she installed didn’t do that and I was in the OR almost as long as when I ruptured or a bit longer. I had no affect (emotions) for several years after I ruptured, all I could say is “brain black”. Until I met up with a woman who used to be part of the ModSupport team and her husband understood and gave me the words - I had no awareness of processing thoughts. Finally, someone was able to give me the words! I became so excited, I jumped up from the table and went and hugged him! When my brain finally allowed me to cry, I’d say I’m a cry baby. Like @Judi mentions, I don’t respond well to anesthesia, I don’t respond well at all to the dye and these both couple up and I get issues.
Like Merl, I believe that with any brain procedure it rattles our blood flow thus effecting the neurotransmitters and they don’t know which way to go especially with ruptures that do an incredible bit of damage. With a craniotomy the doc is literally slicing through a bit of brain tissue to get to where they need to go after removing a bit of skull for access I do believe as I’ve never had one. My Neurosurgeon mentions the belief that she once held thinking that she’s done her repair, everything’s good. She has since changed and is more patient focused on what we may need post surgery.
Another thing that can throw a wrench in for us females is going through menopause as it also rattles the brain as our estrogen levels change. Males experience the same thing though I think society doesn’t acknowledge it as much, but I’ve known a few and thought boy you need some medication for that. You know the ones, they drive a sensible car then all of a sudden go get a sports car that won’t fit the family, sometimes they start arguing or other personality changes because of the testosterone changes.
Some medications can upset the apple cart with side effects. Antidepressants can sometimes make someone more depressed for instance. If you take any medication, learn their side effects by going to the manufacturer’s website where it has to be posted. I once had a wonderful PCP who thought I was depressed even though I said no. She asked me to try a mild one and had me come back in a week or two. It made me depressed and she took me off that immediately, did some more tests and I actually was having a reaction to the poison ivy I had gotten into. I don’t break out in rashes with poison ivy, it gets into my blood stream and makes me feel like you know what.
If you’re feeling depressed, I’ll give you the same advice I gave clients. Clean your home. I know it sound an odd, but sometimes when folks are depressed, they let their house and themselves go. Start by cleaning one area of one room at a time and keep at it. You will see improvements pretty fast. Also make your bed every day as soon as you get up. Exercise every day, get out of your home and take a walk about the neighborhood or park or join a gym. There might be a place in your town or city that has a service for people over 50. My small town does and they offer things of interest from yoga, tai chi, hobbies and Bible study. The cost is free or just a wee small amount, I think the most I saw was $15 which covered supplies. It’s there for people to help them not self isolate.
Remember, we all get it, we’ve been through this and we are here to help.
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Cgranny, I believe what your feeling is very normal! How many people do you know of get hit with the kind of news we did? It’s so easy to say just relax and get on with it! But how? I guess I have taken a fatalist attitude! Nothing scares me anymore because what do I have to loose? I take my time, their is no fire! If I don’t want to do it I don’t! I learned people are very interesting! I can be choose who to be social with or not! I surround myself with uplifting people and have let those negative people free of my life! Only our maker knows how long we have, and it’s up to each of to decide how we are going to spend our time! I hope your day is filled with kindness and light! Be strong for yourself! Soar! Goldmountain
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Thank you for responding. My dr acts like I’m imagining it and neuropsych actually said I’ve made myself this way, convincing myself therefore developing it. No one but my husband and son whom live with me, know how real it is. My other children not so much. So I’m staying home for the most part, and I’m more comfortable that way. I go where I need to and with someone, but rarely alone. I’m dealing with Alexa and Google home and voice notes. I pray you continue getting better and agree anesthesia is NOT my friend. Prayers and blessings and thank you
Teresa
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Thank you for reassuring me. Not a lot doing that. It’s like most either think I’m fabricating or attention seeking or looking for a reason to isolate. I’m sorry that you and everyone here are having problems but I have to admit you’ve all made me feel ‘sane’, ha if that’s appropriate.
Thank you God bless
Teresa
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Alexa is a lifesaver for me too. I started with 1 and now have 4 around the house. Between timers, reminders, and lists (shopping and otherwise), she keeps me as organized as I can be nowadays!
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Hey Teresa,
‘Sane’?? Well, not many people would accuse me of being sane 
I think it’s easy for people on the outside to ‘think I’m fabricating or attention seeking or looking for a reason to isolate’. For many years I was told there was nothing wrong and it was all in my head, little did I know just how real that actually was. Then they operated and OMG, the medicos came out with the line “ohh, it can’t be THAT bad…” It wasn’t ‘THAT bad’, it was worse than THAT. But others couldn’t comprehend it, well, nor could I. Then they came out with 'Well, others have recovered OK. It must just be YOU!!" Like I chose to be symptomatic.
It wasn’t until I found Ben’s Friends that I found that actually these oddball symptoms were much more common than any of the medicos would admit. I cannot tell you how much of a ‘PHEW, so I’m not the only one…’ moment that was for me, because prior I was questioning myself. Just in having others saying ‘Yea, Me too’ was such a relief.
Merl from the Modsupport Team
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Hi yes its right my first leaking aneurysium was 30 yrs ago i was 5 mths pregnant we both survived but yes i was a mess on my own with my son i also had stroke 30 yrs ago here in Australia not much was known about ops for anuerysiums so only one surgeon would do it especially since i was pregnant i still have bad days emotionally and forgetting thibgs ive had another aneurysium the other side so that makes it worse so pls dont be hard on yourself yry some magnesium that really helps me sending my caring thoughts im here if u ever want to talk:green_heart:
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Hi Judy
Yes I very much agree with you. I had a craniotomy May 11, 2022. Unruptured but very sick and was about to erupt the day of surgery.
Inaudible many symptoms before surgery for five months prior to surgery. The neurologists did not believe me that I had any symptoms with the aneurysm. I had many. Slurring my words, headaches with a few types of migraines, I could not remember things, I had Bell’s palsy. No I’m took me seriously. Until I went to Johns Hopkins.
They did the angio and found the aneurysm to be 4.8 instead of the 2 they told me I had here in florida. I suffered until the day of surgery. I was happy to have the surgery. But I was so worried about the afterwards effects. I was not told of all the problems i was in for after the operation. Other than being elated the aneurysm was clipped and I survived I was not aware of the aftermath. I suffered a lot of pain, I lost my eyesight in one eye due to the fact they had to cut the aneurysm away from the optic nerve. I woke up with ear problems right after. I did get my eyesight back but it’s not perfect yet.
I now have a large dent in my skull along with a few others. I have headaches that pierce the one side of my head where the operation was. I have cognitive problems but doing better. However I do have problems remembering things since the surgery. I work on this everyday doing cognitive games etc. I wish there was more follow up with after these surgeries are done. I find it hard to find a good neurologist who cares to work with me. I have yet to find one. What I’ve seen on this last webcast where he’s telling about cognition I was impressed that they are following data from people like us who have been through a lot. I wished JH followed up better then they do. I have so much to tel my surgeon but she Doesn’t want to hear any of it. It’s like they do the operation and then it’s time to move on. NO that doesn’t work for me so I’m trying to find help. A great neurologist who can help me through these strange anomalies that occur and I like reading this feed as no I don’t feel alone. We suffer and I don’t know why. Thanks for opening up a whole new chapter that we can get help and there is care and studies going on. I am not the same person I was. But I’m happy and blessed to be here. Thanks y’all and bless you for going through a tough time. I pray and hoo you are all getting the best help you can. . We all have a lot in common. Suzanne
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It’s good to hear from you again! It’s really hard for surgeons to know where to send us when we live in another county much less another State, yikes! You may want to start a new topic asking about a good neurologist in your area of Florida. We’ve many members from there. You may also want to look into a Cognitive Behavioral Therapist, they help those of us that have brains that don’t quite work like they used to. Think stroke or TBIs. We didn’t have any for adults in my neck of the woods, but my Medicare works with a company called “AbleTo” and I did get some much needed help, twice. The first time I worked on holding images in my brain, I still have to do that work. The second time was getting over apprehension of doing something I love to do and getting out and away from the house.
I’ve had a couple of neurologists that were doozies when it came to me and I’ve had three that have been good for me. The latest is a NP, he did the mistake of thinking one time I didn’t have many issues and had a difficult time believing I did need to see him. I pushed, he relented and said he would never make that mistake again. It’s not his fault as I had just met him before my fourth procedure and I was doing pretty well that day until I wasn’t. I failed most of my neurological exams when I saw him. It was so bad, he ordered an EEG, MRI/As and gave me a prescription for as needed basis. I got my fourth procedure soon after that.
I’ve learned here in our group that we often have to really advocate for ourselves. I’ve also learned that if your surgeon doesn’t have good staff, our messages get thrown to the curb, mine did once, she’s moved on and was replaced with one my doctor was allowed to hire. Keep sending messages to your surgeon, if you need to, call their triage nurse and tell her. Triage RNs are where I got my help when the not good for me NP was my Neurosurgeon’s assistant, talk to your PCP, find out if your health insurance covers CBT. Remember, the squeaky wheel is the one that gets greased.
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Wow you’ve been thru it. I’m sorry your dr, just as. Mine, acts like he’s never heard of after effects. Ughhh. I’m praying for us all!!
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I’m sorry you’re having issues. I’m sorry I drs are so afraid of lawsuits they shoo shoo us away I don’t want money. I want to remember what I did 5 minutes ago. We’re going to make it!!! Oh another subject…SLEEP!!! Does anyone have sleep issues. I did before my surgery now it’s terrible. Just wonder what that’s about? Ha. Have a great day and God bless
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Yes on sleep issues. Talk to your surgeon or PCP. Sometimes we need our PCP to pick up the ball the surgeon dropped.
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Yes sleep has been a a tough one as I wake up with these migraines. Ijust contacted my Neuro
ENT. He is amazing and I’m hoping he can help. He’s the one who worked with me before the aneurysm. He told him I had something going on and need to see a major Neuro group. That’s when I contacted Johns Hopkins during the time I got the aneurysm.
I’m ready to start a pod cast on these subjects as I have done a lot of research and I am finding many people have the same problems I do with Neuros. Especially Neurologists. Many absolutely can’t deal with people with complex issues. Unless it’s a fixed diagnosis like MS etc. They pass it on to psychotherapy issues. Did that and it was like I was teaching the psychologist. They were clueless. That’s when I had the aneurysm. They told me it was all in my head. It was. They told me people have no symptoms with an aneurysm but they are not finding out yes there are.
I have no trust in neurology other than when I hear some of these great drs on these pod casts talking about the research they are doing and how it is imperative to seek help with a good neurologist. Hard to find as you said.
I was a premed major. Went a different direction and learned one thing and that is to be our own advocates. I constantly help people find help in the right direction. But for me it’s tough with my complex issues.
Anyway, it’s good to have you to talk to. Tells me I’m not the only one. :)
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My pcp is my Godsend he’s amazing. I thank God for him each day -well when I remember🙃
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Bless you. The sad thing here is ALL drs are part of same medical system so they ‘cover’ each others rear and agree with each other. I don’t think my blneuro did anything wrong. I think the anesthesia got me. It did my mom. But regardless we’ll plod on and do the best we can. Wish I had gone to John’s Hopkins although my surgeon was taught at John’s Hopkins. Think I was a dud before this. Just made it worse ha!
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Oh my, don’t even get me started on sleep issues! I’ve been a mess since my first surgery (endovascular). I’ve had a total of 8 angiograms with different levels of anesthesia in 26 months. I’ve given up on a good night’s sleep. I’ve had various sleep meds but they make me lightheaded the next day. I can use some over the counter products but I’m lethargic the next day. Both prescription and nonprescription make my cognitive issues worse. I used to be able take a 30 minute nap after a bad night’s sleep before all this, but now I can’t sleep during the day either. My neurologist thinks I need therapy, but I know that isn’t it. It’s not stress, or racing thoughts. I lay there too exhausted to move but can’t sleep either. It’s frustrating because I can tell when stress or anxiety are involved (and I’m not too proud to admit to it) but 9 times out of 10, that’s not the cause. It’s some strange new dysfunction.
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