My husband is 30 days post crainomty additional 3 embolization prior . He has a grade 4 - 4 cm avm in occipital right area. While I’m so happy that he made it of his 8 hour surgery alive and well with minimal side effects at that time . I am some what distraught as how he is no longer who he was behaviorally before the surgery . He has zero of his personality left half the time it’s as if he is zoned out completely. He is quickly agitated with our five children to where they actual prefer not to be around him as he will be quick to tell them to shut up or just yell at them (he was nothing like that prior to surgery ) . He does not make eye contact when speaking to people and he has no opinion at all . Every so often we catch him dancing to absolutely nothing which is just odd. I don’t want to sound ungrateful because again I am forever garetful to god for blessing us . However I’ve only been married one year and it’s hard to no longer have the person you were once with . It’s like having to fall in love all over with a new person . I mentioned the behavior to his neurosurgeon they said give it time but I’m concerned because as time progresses he seems to be getting worse rather than improving .I should also mention he know has short term memory and has no recolllection of what occurs the days prior so talking with him about his behavior leads no where and he doesn’t remember doing these things. Hoping someone willl tell me it will get better.
Hey Sochoa,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends. And I too have had a few neurosurgeries, including a craniotomy.
I must say here 30 days post op is still early on in his recovery. A craniotomy is not only an assault on the brain, it’s an assault on the whole person. Sure, the external wound may seem all healed, but internally the brain itself can take longer, much longer, to settle. Some medicos have given me the standard ‘6-8 week’ timeline and for a muscular/skeletal procedure that timeline is about right. But we’re not talking muscular/skeletal, we’re talking about the brain and the physical healing of the brain can take much longer. Then we have to deal with the psychological impacts and that’s another HUGE load to manage.
For me, it was not a straight line of progression. Far from it. I had good days, bad days and days you wouldn’t wish on your worst enemy (OK, so maybe you would wish it on them, but they never seem to have THOSE days.) Just when I thought ‘HA, I’ve got this thing beat…’ It would up and bash me into submission again. I was annoyed, I was VERY annoyed that I wasn’t meeting my own ‘self imposed’ progression mile stones. The medicos had given me that ‘6-8 weeks’ but here I was at 10 weeks and there was still very little improvement and I was annoyed, primarily with myself, but it was everybody around me that wore my wrath. Somebody could do something that under normal circumstances would be insignificant, but add that little thing to my load and I’d explode in rage. It wasn’t the person, it wasn’t what they’d done. It was me, but I had nowhere to put that angst and the smallest things could tip me over the edge and BOOM everybody wore it. Afterwards, ohh, I felt SO VERY guilty for exploding and I learnt to internalise it all, but that turned out to be self destructive. I needed help.
I saw my PCP and got a referral to a psychologist. This was one of the best things I could have done, only wish I’d done so earlier. They helped me to identify my triggers and modify my behaviour, to not be so self destructive, to identify within myself when my tolerance levels had reached their peak and I needed ‘timeout’. They assisted me in accepting this new reality, well, to ‘somewhat’ accept it anyway. I wasn’t happy about it all, not at all. But beating myself up (and everybody around me) wasn’t going to help. It just pushed people away, but my frustration was HUGE. I put steps in place to identify, in myself, when my limits had been reached because every day was different. It wasn’t that I could say ‘At 3pm I will be symptomatic’ if that was the case I could work around it all. Some days I could feel my limits slowly building, but then some days it was like someone kicked me in the back of the head and God help anyone in the vicinity. I could rip a carcase apart, just with my tongue. NASTY.
Now, I also want to say here you need to make sure you look after yourself in all of this too. I’m often saying to members ‘If anybody ever tells you this is easy or a simple thing to deal with, they have NEVER been in this situation themselves’ and that’s for both the patient and their family. So, I’ll be the one to tell you ‘…it will get better…’ but it will take time. And nobody can say ‘How long’, not even the doctors. I say this because I’m 10yrs on since my last surgery, but still today, it can be a battle at times. Nowhere near the initial post surgery battle, but not the pre-surgery ‘Me’ either.
We know this because we’ve lived it too, so come talk to us.
Merl from the Modsupport Team
Hi @Sochoa17
Welcome to avmsurvivors! It’s really good you found us and I hope we can help you along the way.
When Merl and the neuro say “it will take some time”, I honestly think you’ll need to think in terms of multiple months rather than days or weeks. That feels like a long slog, I know, but that’s how long it can take. Clearly his stroke or the operation has done some damage and it will take time to recover. 30 days is seriously very short a time. I would expect (from reading the stories of others in this community) that you should think he has only just started his recovery.
Does he have a rehabilitation plan? Do you have any review dates in the calendar with the neuro? I think these are what you need to ask about and he may need some help, as Merl described, to aid with getting better and understanding how to be more “positive” (I’m not sure what word to use here!)
I can tell you that I had just one embolisation and while I got through that very well (and I don’t have any deficits) it took me about 6 months to feel “ok” but a lot longer to feel back to “normal” ish. I’d say it took me 18 months to two years to get back to basically “normal” and I didn’t have as adventurous a time as your husband. So I hope this helps a little in terms of really how long some of this can take. It’s important that you understand that and can work out your own strategies for how to get through that time, just as much as he needs to get through that time.
I completely agree with Merl on this point. I think it is like when you travel on an airplane: they tell you that it is important, if the air supply fails, that you put your own mask on before attending to others. This is exactly the same in this situation: you need to make sure that you pace yourself for how long this journey could be, make sure to keep yourself towards the top of the priority list and make sure you are properly looked after so that you have the strength to look after him. Being a carer is probably one of the hardest jobs in the world. Hopefully, he will get out the other side much better than he is today but it is going to take “quite some time”.
I hope some of these thoughts help. (We are here just as much for you as we are for someone like him).
Very best wishes!
Richard
Hi @Sochoa17
I hope things get better soon too but give your husband a break.
He’s having to suffer the surgery and deal with all these things that none of us wanted. Some people die from this so it’s not surprising that he feels different now. His recovery will take time so talk to him about how to get the kids to help him and you deal with this. Each case is unique.
Good luck
Tim
I will say as well, 30 days is a short time. I did not have a craniotomy but did have a bleed that took some time to recover from for sure. I am curious if he is on any medications post surgery? There is sometimes a delay to adjust to the meds, which may compound some post surgery recovery? If so, another discussion point with his Drs. Take Care, John.
Hi S, I can relate to what Merl says because I’ve lived it. I don’t know how it is from your side of the street. Probably you’ll be severely tested and your two most important tools will be your big heart and your big mouth. (teasing) I mean your ability to communicate. (Just wanted to get your attention in a way you’d remember.)
Of course you didn’t sign on for this so the unfairness just adds insult to injury (literally). Try to be kind to yourself. Best wishes, Greg
I will add the seizure med they put me on, Kepra, gave me “keprage” and impulse control issues. Maybe one of his meds is a contributing factor. Greg
Hi everyone wanted to give a quick update . We are now 100 day post op. So a little over 3 months . Nothing has changed my husband continues not to be my husband instead his therapist have put him on combination of psych meds (citalopram and abilify) to try and help with his odd behavior. Personality is still completely gone, he’s unable to maintain focus on any one thing particular & short term memory is still a goner. I am thankful for your replies as I know this willl be a long road to recovery if we should ever get there, while I do understand three embolization and a full craniotomy in less than 30 days together is a lot I am hopeful he will one day be close to who he was .
Sorry to hear,
This brain surgery/damage stuff changes the thinking process A LOT! - and, we’re all different
Can’t imagine seeing it from the other end
After my hemorrhage, then embolization, a tad over 3 years ago - I notice that I changed a lot. But, I try my best to keep myself in “check”. It’s a lot harder than it sounds - I’m still on a heavy dose of antipsychotics. Now, my PCP wants me to go into a psychiatrist & get on antidepressants.
I’m not depressed - but, it’s difficult for me to keep leveled.
And, “only” had an embolization - a resection has to be so so much more difficult.
Try your best - wish u all the best!
Thank you mike !
Wish you best of luck . My hubby visits the psych every week & therapist. He actually left today with yet another medication . I guess it’s a play around with medications till they reach the right cocktail for him. Thank you again for your kind words I am trying to not be a selfish wife & understand him he just shows no emotions so hard to read.
Very hard to say on what’s exactly going with him - brain damage makes us feel(mentally & physically) & act quite differently previous to it happening
I’d hang back & give him space - but, be there. . . My wife is quite the opposite of yourself. She makes it seem like I should be just fine & carry on as I did prior to this.
It is what it is - I wish “us” all luck at this point. We definitely need it.
Hello again.
It sounds like you’re having a heck of a time and I understand you are quite newly wed. Three months is still very early (thanks for that, Richard!) and I don’t know enough about what functions of the brain are where to understand whether the kind of deficits you’re describing in your husband seem likely to be ones directly related to his surgery etc. I guess depending on how directly they relate may indicate how much he will improve from how he is today or how much could relate to “collateral” damage done and may not improve as well.
How is he in himself?
I’m following the reports of the writer, Hanif Kureshi, who had a fall while on holiday in Italy perhaps last Christmas, through Twitter. Hanif has a spinal injury and is going through a painfully slow progress to recover his motor skills after the accident. I can see that he has been able to stand briefly, supported, recently but what is anguishing him most is the glacial pace of change that he is living through. Hanif is clearly quite depressed but as more detached observers we can at least see some progress through his motor therapies.
In terms of trying to encouraging you about how long these things can take (and how patient you may need to be) I rather like the following film that I saw on TV a few years ago. My Amazing Brain - BBC Horizon - #2 by DickD It charts the progress of an older gentleman after a massive stroke that affected a number of areas of capability: his strength and motor skills, his information processing and his language skills. What we can see in the film is an example of a recovery from stroke (note, not from an AVM surgery) and the subject’s progress over 3 or 4 years.
You have an incredibly difficult situation with your husband and I hope you’ll get more of him back over time.
Lots of love,
Richard