Thank you and we get the bone flap in a few hours . It’s 10pm and we report there at 5:30am . I’ve ready so many good things about the bone flap going back on.
Thank you l, it def is a journey for you and my husband and I hate yall went through this . (I hate that anyone has to go through it) when you got down and super depressed what helped. Did you get to a point where you didn’t think it was going to get better and didn’t want help? I’m just curious bc that’s where we are right now I’m trying to figure out what to do. I got him setup with a therapist but he says they don’t know what they are talking about and they don’t understand. Any advice is very much appreciated.
Yes I certainly became down and super depressed, to be honest there are times when I still do. One thing I learned was that I was not alone in feeling this way and it is a normal part of brain injury. What helped the most was getting as much information as possible regarding brain injury and post traumatic stress disorder. We have all gone through quite a trauma and coping with it can be really tough. I actually purchased a workbook on cognitive behavioural therapy which really helped me a lot as well. I am on an antidepressant for life - not only for depression but for controlling my filters. I have a very supportive doctor who when I interviewed him (which is a good thing to do) admitted to me that he knew nothing about brain injury but was willing to work with me and figure things out as we go along, which I have tweaked my medications as I hear about new things and then research and present the information to him i.e. like I switched to duloxetine as an antidepressant as it works on neuropathic pain as well 
Regular doctors do not specialise in one specific thing - so we need to be proactive and research as much as we possibly can and present that information to the doctors. Your husband should also attend all appointments with you or someone he trusts as he will never remember all the information they have told him. I used to take a tape recorder or my iPhone with me to appointments as well and ask if I could record the session so I could re-review it later. Some will understand and allow this and if not I have a pen and paper ready to write everything down. The information can be so overwhelming and easily misinterpreted. Your husband is facing so many emotions right now that he probably has lost faith in the system which is very easy to do. You may need to see several therapists until you find the one that is the right fit for you. My first two therapists absolutely ticked me off and this created an atmosphere that was not helpful for me. I finally found one that I was comfortable with and that really helped. Remember - they are people too and we don’t always mesh with every person we meet! Best thing to remember is to research everything you can get your hands on. I found a really good resource out of the UK Traumatic brain injury | Headway this site gives quite a lot of good information. One day at a time and you will both make it through Hope this helps.
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I’m almost glad at times that I was in ICU through all of this on my own - I had face time when I needed support from my wife & son(this is the longest any of us have been apart since my boy was born)
But, I wouldn’t change it for the world - it’s intense & my embolization is nothing compared to a resect or a craniotomy - and, so on
I had to let go of everything I was - I was blessed enough to come back - just hoping & praying now that it lasts.
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Also, improvement is ongoing and again a day to day process. I have good days and bad days. In my medical transcriptions (which because of my research my specialty ended up being in brain injury… Lol) I hear the doctors saying that after two years you will be at your best improvement - but that is wrong. It took me the first two years to adjust to the changes I was facing - not being able to go back to my career in the finance industry because I could no longer do math for the life of me (still can’t), not having the energy to make it through a day and having to take naps etcetera. I had to accept my disabilities before I could actually start improving and it took me over two years just to do that. I am now 10 years out from my surgery and I am still making improvements! We have the ability to make new neural pathways so never give up.
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Hey Crystal,
If it’s any consolation, from my experience, nobody has it all figured out. Not even the medicos. We are all individual and so are our injuries. How those injuries affect each person can also be VERY individual. Even in my own situation where I’ve required multiple neurosurgeries, none of the recoveries has been the same. Often one of the biggest (and least identified) impacts is the psychological impact. The frustration, often with self, is HUGE. But the more I focused on it being me (which is what the medicos were pointing at as cause/effect ie ‘It’s just YOU…’) the worse my psych got and that rage built and built until it exploded (Not a good idea).
Mike_az states “I had to let go of everything I was…” and so did I, but I fought like the almighty against it. I didn’t want to accept ‘This’, the reality is I had no choice but to accept it all, but I had to prove this to myself. Others were telling me but my attitude was …
Now, to actually sit down and look at self… Ohhh that can be an ugly view. I HATED it.
It is much easier and psychologically safer to blame everybody else than to focus at self, but until we take that long hard look at the reality of it all (and ourselves), the processes of moving on can slow and almost stall.
I must also agree with ‘JillPW’
Recovery is not a straight line and can vary from day to day (heck sometimes it’s more hour to hour). I have good times, bad times and OMG times. I’ve often explained it like this:
Some days I could leap a tall building in a single bound, but on other days I’m lucky to be able to crawl out of bed. I simply never can tell, it’s all variable.
There is no right way or wrong way to manage it all, there is only ‘His’ way and all you can really do is to be there to support him along the way. It’s not an easy journey for anyone involved.
Merl from the Modsupport Team
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Sad to hear about your ordeal. My AVM in the Right Parietal leaked/bled, required an emergency craniotomy and almost killed me. The Hemorrhagic stroke lefty me with seizures, left side paralysis, and blind in the left side of my left eye.Due to some swelling issues then a DVT, my bone flap was off from Aug 1 of ‘13 until May of ‘14. We temporarily got me off anti coagulants, put the bone flap back on Friday and I went home Sunday. Took a while to get the seizures under control and the damage to my balance center in my brain has hindered me from walking safely without a walker. Left arm likely a no show from here on out, but I’m alive and my family is just used to my disability and the fact I will be wheelchair bound.The depression is real, but my faith in Jesus Christ and my family help me. I have tried some counseling, but most just do not get it. You may try a neuro psychologist. I have not because I am managing it myself. I know it sounds trite, but there are many people worse off. No matter what. Never give up, ever. I truly sympathize with your fears and depression. DM me if you’d like to talk. I’ll try to help any way I. can.
Mike
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One thing I was just thinking about was that my granddaughters were one year old and three years old when I had my surgery… They have basically only known me the way I am now. I have explained to them along the way that some of my difficulties are because of my brain injury and I let them check out my “cool scar”… They are so comfortable with me and I am so comfortable with them because they have always loved and accepted me with all of my baggage… We have found different ways to spend our time together. In fact, I set up a movie theatre in my back yard in the summer and our favourite thing to do is watch movies together (an activity that is not too taxing on my brain). The kids are used to going for walks with me and just spending “love” time. They call me the “chill” grandma 
Your little one will grow up with the advantage of loving dad for who he is and not for who he was.
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@ModSupport - @DickD - @merl and all, thank you all for appreciating how regular and normal we are - at least regular and normal as far as this group is concerned! LOL
This post kind of hit the middle of the target, so to speak, with me. Why? A couple of things that I and Mrs. Better Half have talked about that you bring up again - how can she be there for me when she really doesn’t know what “there” is? The best answer we’ve come up with is essentially two different focuses (foci?)
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Perception is reality - If I feel that something is happening or something makes me feel _________ then it does. Don’t argue with an AVM patient, instead, make them feel validated, try to understand, and take their word for it as much as you can. But then, at the same time, help them (us) see what their challenges have to the rest of the family. I have said, so often, I wish my family could, for 20 seconds, hear what is constantly going on in my head (at which point my 20-year-old said something about already knowing what rocks sound like.) Help those of us who deal with the realities to look to you, our family, for validation that we aren’t going nuts because that thought is going to cross our minds.
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He’s not trying to be a pain in the south side. Seriously, your son, parent, boyfriend, husband, wife, daughter, wife nephew etc. is not going to stop at the grocery store and buy bread and NOT get milk, even though that was the only thing he was supposed to get.
"Do you actually think that I would spend 45 minutes going to the store to buy something we don’t need?
Ask and wait to hear an answer before you attempt to figure a way to make it work… Especially if you are dealing with an AVM patient who is trying very hard to make things work?
Ask yourself, if I had this AVM thing and it was causing me to do _______ (Something radical like become a Chicago Cubs ) Do you think if that were the case that you’d do it?
Yeah, me neither.
TJ
’
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We had the bone flap put in Thursday and we are home as of now. Therapy has stopped as an outpatient but im exercising his left arm and doing as much as I can to help. Hes pretty swollen and upset today bc hes just ready to heal.surgery went great
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Everyone had helped me in alot of ways to try and understand what hes thinking and validate its okay to not be okay at times. I watched that video and it really helped me and I wish he could do therapy 7 days a week but the insurance companies don’t cover so much. And also wrre not alone . There’s a huge community with avm survivors and yall are amazing to take your time to help me and him !
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Crystal,
I think whatever you can do to help not lose 2.5 days a week will help, even if it is small things. Hopefully, having the bone flap back in place will help him feel more “whole” and normal again and the mental aspects of all this should never be overlooked.
He’s just had a big op, so I’m sure he needs to feel a lot better but once he’s over the impact of the op, I hope he can make a start on the rest of his life.
Keep in touch!
Richard
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