I’m not totally sure what to do. The day before Thanksgiving this year, my girlfriend, K (25), of 3 years had an unknown AVM rupture in the left hemisphere Basal Ganglia region. Thankfully she was at work just a few blocks behind a hospital and her co-workers were very quick to recognize the symptoms of the hemorrhage and stroke. So she was there and had treatment started within half an hour. She was transported to another hospital in New Orleans shortly thereafter, and was rushed to have an angiogram and emergency craniotomy. They removed a portion of her skull, did some minor resectioning to remove one of two clots formed by the hemorrhage, started the vents for decompression. Her ventilator was removed just a couple days after that, and the next day was removed from sedation. She was breathing on her own and responsive to some things, but as far as I know, has not been able to follow commands.
It’s been over a week since I’ve heard any news. Her family is extremely controlling, and worked pretty quickly to remove me from everything. I respect their position as her caretakers. Since we aren’t married I really don’t have a say in what happens, and I accept that. It’s just scary being her significant other and being totally in the dark about what’s going on.
I know it’s still very early in the process of things. Joining here has given me a lot of hope in regards to what all of this means, and what the potential can be for survivors. I guess what I’m really trying to do here is absorb as much knowledge, inspiration, and hope from all of the people here that have either lived through this or been there for someone that has. I really don’t have the best support system in place for something as big as this, but the posts I’ve read here have really helped me in many ways to accept/prepare. So if any of you have any success stories, inspiration, ideas, or just some general support you are willing to share it would be greatly appreciated. I love her with all of my heart, and even though we’ve only been together for a relatively short time I made a promise to protect and care for her no matter what.
I’m so glad I found this support group. Thank you all so much for everything you have shared here. It’s truly inspiring to see it all.
Hey JT,
Welcome to Ben’s Friends.
Your first words here “I’m not totally sure what to do…” and nobody ever is totally sure. An AVM isn’t something anybody ever plans for and how each individual reacts to it all, emotionally, can really determine how difficult this whole process is. You are in a very difficult position as her partner, especially when family want to takeover. At times like these it can take some real inner strength to step back and as you say ‘…respect their position as her caretakers…’. Communication is going to be key here. Your communication with her, with her parents and with medical and support services.
I am NOT going to tell you this is going to be an easy journey, because it’s not. Not for anybody involved. All you can really do is be there for the support of each other, for whomever needs it. There could be a whole range of emotions involved and everybody needs to deal with this in their own way (and this includes you too). For some patients there can be an almost miracle recovery, for some there can be minimal long term effects. But for some the effects can be catastrophic. There is no set measure, there is very little in the way of cause and effect. Each person is different and so are their recoveries. I often explain it like this:
“In science a common theory is A+B=C. But when it comes to neurology A+B=C is way too simple. For me it’s more a case of A+B-C/DxE√F etc, etc and everyone of them is variable”
Welcome JTS, I hope our experiences here in the world of AVMs help you out. It sure sounds like you’re in. really tough spot, and I imagine worried sick. I agree fully with Merl, be there for whoever needs you to be there, there will be a lot of emotion attached, often centred on not knowing what might be next. I had a bleed in 2016, spent some time in the hospital and had gamma knife as treatment. I’m fortunate to have mostly recovered, still a couple things most don’t notice. It scared me greatly, and changed me for sure. It impacted my family greatly at the time, they were very worried, realized I was struggling in a variety of ways, and certainly tried to do what they felt was best. The biggest was patience, supporting me. They will never, or I hope never, understand what I was going through but simply being there when I needed them was key. When I was pushing away, giving me the space.
I hope you’re able to open up the lines of communication, but do know that emotions will be high and most are going through a completely abnormal situation. I refer to the line about some stress reactions, a normal reaction to a completely abnormal situation. Take Care, John
Welcome! I agree with the guys. I think being cool about the parents getting somewhat over possessive is very considerate of you (my in-laws would’ve been the same tbh but I would have been less cool about it than you, so kudos to you for that!)
Doing everything you’re doing sounds good. Read up some, I hope it will help you see that none of this happens quickly, so you’ll need to be patient. Arriving here, understanding what this was all about (I’m the patient in our house) helped me to rationalise a lot and get to a better place than at the initial shock.
Remember, like being on an aircraft, to look after yourself first in this emergency. Don’t go so far as to risk your own health by ignoring food, drink, proper rest. This could be a long trip and you’re going to need to be fit for the whole thing if you’re to support effectively.
Think about the longer game. Her parents are probably focused on today and tomorrow. Help them to look a bit longer, encourage them to be careful and look after themselves and I hope you’ll get let in again soon.
We are here for you as much as you want or need. Ok?
Hey, everyone. Thanks for your kind words and advice. I wish I could say that the situation has improved, but sadly that’s not the case. I’m still not sure how she’s doing, but shes always been a very strong person. I know she will continue to fight in every way she can. It’s been almost a month since I’ve heard any updates on her, and her patient code was changed so I can’t call the hospital for news. As soon as I know something about her progress I’ll update here. Her family has essentially cut me out complely. I’m not sure when that will be, but I will keep pressing on and hope that I’ll be able to do that soon.
A month is still very early in most recoveries from a bleed and a craniotomy. I can’t comprehend how you are, cut off from it all, but assuming that she is making ok progress, she will still have a long way to go.
My understanding of the basal ganglia is that it is quite core stuff. A bleed from there seems likely to me to be quite impactful, so her recovery (and it is in a dangerous place, so we have to think she may not recover very well) will take a long time. I also don’t think it is at all normal to operate near the basal ganglia with open surgery – usually doctors don’t operate thereabouts for fear of the damage that operating itself will do.
I honestly think you need to think I’m terms of years rather than a month.
I also think it is quite possible that K may be in a coma and for that reason her family don’t know how to talk to you about her.
The only thing I can think is that you continue to try to keep the communications lines open to them, understand that she is very poorly and you all need each other’s support in such a difficult situation.
I wish I could somehow help, too.
You do have my very best wishes for you, K and your family for the year ahead.
Right right. I was there for the first week. I’m not sure if I mentioned it in the initial post, but she did have an initial craniotomy and minor resection to remove a clot. The doctor said they did very little in regards to the surgery to keep the damage as minor as possible. A small portion of skull was left off for decompression. She was showing signs of some minor recovering here and there. She wasn’t fully “asleep,” but she would only respond to certain stimuli. Mainly squeezes, some movement tracking when her eyes were open. Her Neurologist, which was very grim on the first day, said she was “ahead of the game” after the fifth day. She had her ventilator removed, and a slight cutback on the sedatives, but had to go back on them to help with the neural storms. She actually used her right hand to scratch her nose at one point (the hemorrhage happened in the left hemisphere). So there were some positive signs even early on, but we were all aware it was going to be a very lengthy process. She’s incredibly lucky to be alive, and I’m fully prepared to wait/help as long as it takes. I’ve accepted that it was in a very delicate place and that she more than likely won’t be the same after this, but she’s my person. I made a promise to take care of her no matter what.
You’re all in a tough, tough hole but that initial feedback sounds positive. Keep hoping, keep offering the olive branch, stay true and I hope 2021 will turn out good.
Hi Jstock0405, It sounds like she caught a bit of luck in NOLA. As far as the emotional side, her family might treat you bad because of their own pain/confusion. You sure don’t want to react negatively. This may be a level of maturity you’re not at yet. That’s okay. If you get mad just apologize quickly and sincerely.
The other aspect is helplessness. A lot of us struggle with that feeling.
A good philosophy is, “Care don’t cure.” The curing might happen, it might not. But the caring/loving is just as important.
I remember I had a vanity thing after my craniotomies. (getting fat, shaved head, black eyes, big scar, restrictions…) You might be able to give her some confidence in her appearance and let her know that she’s beautiful. Good luck, Greg
I actually have some good news! I still have no contact, but a mutual friend shared some updates to try and keep me in the loop. She has started assisting with eating and drinking. She is non-vocal and has some issues following instructions, but she’s showing emotion! She’s a lot more alert now and seems to be regaining fine motor skills. She’s also building strength and reacting more with her right side (the stroke was very deep left hemisphere). There’s even a photo of her standing with some assistance. So things are definitely taking a turn for the better for her. Especially considering how deep and extensive the damage was. It’s astounding how much progress she has made.
This is fantastic to hear, she is making steps (No pun intended) in the right direction BUT
I must warn you, that thing called recovery can be a bit of a seesaw, up, down, up, down…
The ups can seem ‘astounding’ but often recovery is not a straight line trajectory and the downs can be as far, if not further, down than where she started. This can be a little shocking for some and very hard to accept by all involved, including her and the emotional rollercoaster can be nothing short of exhausting.
Some people can come through it all relatively unscathed but for some that up, down, up…can go on for years. So long as you are aware that there will be good days, and we all hope/wish/pray they continue forever, but along with the good there may be bad days too and that’s when people will need support.
If you want to understand recovery from a stroke, I find this to be a really useful documentary. It sounds like K is making good progress after a fairly significant stroke but there is every reason to think she can get to a good outcome with the right care, PT etc. My Amazing Brain - BBC Horizon - #2 by DickD