My husband has an avm rupture the end of last September which left him paralyzed on his left side. His leg has woke up and hes walking with a 4 prong cane but this left arm hasn’t had any movement. We go in to put his bone flap back on next Thursday the 28th. So many things are running through my mind . Hes having the hardest time mentally with depression bc he is 29 and life has halted. We have a 1 year old little boy and I knowbit makes him upset bc he can’t play with him. We have heard so many things about the bone flap surgery and how it could boost his muscles to start but when I talk to his neurosurgeon he says it might be a while before it comes back. We are doing everything we can to try and get some kinda normalcy back but it’s def hard. He just wants to drive and work again. The doctor said he doesn’t see why he can’t work with limitations but he can’t get in and out of truck alone yet or even drive. They are worried about his leftside vision. My husband says it’s good but when we do work on paper he skips left side alot… his personality has def changed but I dont blame him from the depression. He’s meaner and noone is right . His doctors, therapist,primary care doctors if they say something he doesn’t agree with he thinks they arnt smart. Right now I think we have platoed. Not sure if that’s spelled right. He is in a rut and if anyone has any advice on anything I’ve mentioned please help.
Sure sounds like a tough few months. It will be nice to get Thursday in the rearview mirror. So 4 months post rupture followed by his craniotomy, is not a long time in recovery for the brain. The time presents a lot of challenges and it is hard to remember that forward is forward, usually slower than we like. I had a bleed but no craniotomy, gamma knife, so am speaking from a different experience. Patience is key. He is fortunate to have you with him, and supporting him. That makes a huge difference as well. Where was his AVM? What area of the brain? Take Care, John.
Thank you and it was front right lobe area. We are definitly ready and super nervous about Thursday. The neurosurgeon said he was able to remove all of the avm in Sept so no need to mess with brain itself but im super nervous about the fliud around brain. Right now it’s just a pocket on the side of his head.
Hey Crystal,
Welcome to Ben’s Friends.
This neuro journey is not easy for anyone involved and I can assure, that’s normal. Post craniotomy I wanted everything to be right and I wanted it right NOW!!! That didn’t happen and I too sunk into a hole. I had a life, I had a profession and POOF, it all vanished. NOW WHAT?? If someone looked at me the wrong way or said the wrong thing at the wrong time I would just explode. It wasn’t that I had a short fuse, there was no fuse. My frustration was MASSIVE (Most of it with self) but if someone questioned me about it all, BOOM.
Personally, I had the medicos questioning my ongoing symptoms, so in return I questioned them, Ohh, they didn’t like that. But as much as they were questioning me, I was questioning myself even more. ‘Why can’t I? I could before, so I can again…’ Only I couldn’t. All of my tolerances had changed, both physically and mentally. I was not at all accepting of these changes, in fact I fought against them, trying to get back to ‘normal’. I returned to work on ‘modified duties’ but even that was too much. The more I pushed myself, the more my body pushed back. I was in denial, I tried to convince myself (and those around me) that “I’m fine”. My body was telling me ‘Lay down or I’ll put you down’ I ignored those signs, convinced myself I was building stamina and it put me down HARD. My wife could see through my mascaraed, she could see what I was doing to myself. Driving myself into the ground to get the task done, but then needing 3 days to recover. She sat me down and gave me ‘The talk’ and in real basic terms she told me ‘STOP IT’. This recovery thing is a slowly, slowly process.
In your husband’s defence, one of the most frustrating things for me was EVERYBODY having an opinion. For example, ‘My friend ‘John’ had one of them and he’s OK…’ and without them saying it directly, it was like ‘So, what’s your problem?..’ as if I choose to be in this situation. Who on earth would choose this? Not I, that’s for damn sure. I also found the medicos an issue, they all had varying opinions, so trying to get consensus or clarity was near on impossible and this only added to my frustrations. All of it only added to my ‘load’ until ‘my cup overfloweth’, Ohhh my poor wife, she put up with SO much. Tsk.
I had to get to a point of ‘Acceptance’ and I fought like hell not to accept, I didn’t want to accept ‘THIS’ (I still don’t want to) But the reality is I had/have no choice, I have to accept the reality of it all. Don’t get me wrong here it’s not a case of giving up, not at all. But it has been a case learning or relearning all of my limits. Before all of this I had 2 speeds, full tilt and stopped. Now, I’m lucky to even get to half my ‘Old normal’ and pacing myself has been so foreign. Tasks that used to take me an hour or two can now take all day and I often need rest periods to get it completed. GGGGggggrrrrrr Not normal at all.
I have found it easier to break the task down into steps rather than looking at the task as a whole. This has helped in that I can see the steps I’ve succeeded in completing rather than the failed whole task.
Those things that may have been considered little goals have become larger monuments and acknowledging them is important because those little ruts that we can get stuck on can build up and our progress can halt. I fell into an awful hole of depression and even the little things became too much. I needed to ask for help, professional help, a counsellor, to get my mindset out of that hole I was in. My only wish is that I’d done it sooner, but I had to be at that point of acknowledging and asking for help myself. Other’s telling me only angered me further ‘I can do this myself, I don’t need help…’ but I did.
I’m many years on from my last neurosurgery and even today I still have great difficulty with the acceptance of it all. My symptoms fluctuate wildly from day to day (and sometimes hour to hour) I simply cannot tell. This ain’t no simple ‘walk in the park’ for anybody involved, including you, and anybody who tells you otherwise has NEVER been ‘Here’. We know this because we live it too, so come talk to us.
Merl from the Modsupport Team
The important thing is that he has you - be there for him, a lot - it helps. . . Recovery for some is not what it is for others.
Especially being 29, I feel very grateful I made it to 39 before my AVM blew & caused a bleed/hemorrhage.
Having support for all of “this” is very important - I know it feels like I’m weak at times, and I sure could use more support - but, I guess things happen for a reason the way that they do.
He’ll have good days & bad(I still do, 6 months post procedure). I was very fortunate to have a embolization that took & did not need a craniotomy, since mine is border line inoperable.
Just be there for him, there is no way to describe what he’s going through - but, it’s rough. Also, try to make sure he follows the directions of the neurosurgeons < this seems to be quite important.
The road to recovery from what he’s gone through isn’t going to be a short one - but, with time he can feel “normal” again.
I wish you both luck - definitely him, in his recovery
Crystal
Hi. I hope that the bone flap could have a worthwhile effect. The following is a documentary of an English couple, husband of whom had a stroke (not AVM-related). He needed a cranioplasty and his recovery really started once the flap was replaced.
I hope you can access this in the US and that it might be of real help.
Good luck this week.
Richard
Thank you soo much. You have given me great insight that is helpful. This has definitly put our marriage to the biggest test bc either one of us know how to help the other person, But we’re figuring it out. We’re struggling with therapy so bad bc when we are home he just wants to sleep and at therapy itself alot of times he’s doing paper work when me and him think they should focus alot more on physical aspects.
Thank you I honestly hope the bone flap helps the process heal alittle quicker.
Watch the video if you can.
I will but I dont see a link or name of video
You have to click on the article I linked first
here it is: https://www.dailymotion.com/video/x6emg54
I can say I no a little how he feels. After my AVM rupture and surgeries back in 2000 I wasn’t able to function my right side for around a month. My right arm slowly came back but my foot just didn’t want to work. The therapist did what was called electrical stimulation. In simple words the attached wires to my leg and shocked it. I had that done for 3 months. I looked like I was back to normal but even to this day some minor problems with my foot. Mostly just when jogging my right foot runs flat. Another funny one is I can wiggle my left toes but I can’t do a thing with my right toes.
Yes I know what your talking about the electrical stimulation . We use it for his arm and it def moves his fingers. We’ve been doing it for about 2 months now.
When you have it ALL figured out… …can you please tell me how?? 
I’ve been on this neuro journey for years and there has been little adjustments needed ever since along the way, just when I think I’ve got it all figured out, something will occur and throw everything off balance. I can never tell what ‘Today’ might bring. I have learnt I need to be highly flexible.
Merl from the Modsupport Team
I wish I had it figured out , every day is super scary especially Thursday for sure . But our life’s have definitely been shifted upside down. His biggest fear is he will go in and with them putting bone flap in that it will set him back and im so scared that it might. I am super proud of him I noticed tonight he’s getting so much better balance with his legs he still looses his balance at times but I catch him with the therapy belt. His attitude the last 2 days have been better spirits before the other day it was bad . Stress had both of us and im still trying to figure out if he has anymore symptoms. Visual weakness, I forgot what it’s called but when you forget your left side. It’s just alot lol this support group has definitly helped me to understand his thoughts better
I want to give you and your husband encouragement! My husband at age 60 had an AVM rupture near the motor strip on his right side. He was essentially paralyzed at first and then slowly regained use of his arms, then his hands, then legs but he still to this day, 8 years later, has some residual damage in his right foot after 3 radiation treatments. He had 7 weeks in an inpatient rehab unit and even then left with an AFO (brace on his foot and leg) and in a wheelchair. He is an athlete so has pushed himself over these 8 years more than most and is able to hit tennis well (he was a state ranked player) but can’t run. He can walk 3 miles. He is a concert pianist and was able to return to playing concerts and making recordings. Bottom line, DO NOT believe any doctor who tells you that after six months or one year you will not improve! There is neuroplasticity and if you keep trying, you can still make progress. But it will take work and it must be really hard at such a young age to get hit like this. But because he is young his recovery could be better! My husband did not drive for 10 months because of his foot drop but now drives 12 hours! Your husband has not stopped improving but his depression could make it harder. Hopefully he has medication to help.
Hi Crystal, it takes some time for things to start evening out. My neurosurgeon did not explain to me the deficits that I would suffer from my AVM (the damage from before the surgery and during) but that is not their specialty. Their specialty is in removing the AVM. I felt like I was alone and going crazy after my surgery because no one told me that what I was going through was completely normal. I almost lost my family members because of my temper (which I had no idea was a problem). I would speak very loudly and forcefully but I didn’t have a clue that I was doing this. I also had a problem with my “filters” meaning I said whatever came to mind without tact or toning it down. I was so depressed that I felt it would be better off for everyone if I had not survived. I had an uncontrolled bleed during surgery in the left parieto-occipital region which has caused a weakness on my right side as well as a very slow processing speed and numerous other problems. In order to get a clearer picture of the affects of the brain injury you would be best to get in touch with a Brain Injury Clinic as well as getting a neuropsychological assessment. The Brain Injury Clinic would be able to better help with sending you in the right direction. No one told me about this pathway and it sure helped when I found out that I was going to be okay. I learned ways to cope with my disabilities and now - after being deemed permanently disabled- I am a medical transcriptionist. There is hope but it will take time, and your patience and support will go along way with helping him in his recovery. Kudos to you for seeking advice on this site, it is a treasure trove of advice from those who have been through what you and your husband are going through. Take care.
My daughter went through similar things just last year. Also left paralysis. Getting the bone flap back in made a HUGE difference in how she felt and her progress. This is difficult but it does improve. It takes a lot of patience. We found out her left eye wasn’t tracking properly. Therapy for her eyes also helped immensely. Prayers for you through this difficult time!
Hear! Hear!
The other thing I get from the film I linked (and I watched it again myself yesterday) is the need for good, consistent, appropriate physiotherapy.
I watched the vidoe today and I loved it. So inspiring and love that the wife’s point of view and struggles are shown. It gave me hope for sure