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AVM Survivors Network

Worn down

Very briefly my daughter’s AVM rupture at age 10 was just over 2.5 years ago. It was very bad, she lost all of her abilities, needed a trach and Gtube, and she was hospitalized for 8 months. On August 17 it will be 2 years since she came home from rehab. We are very lucky and grateful that she has recovered as well as she has. In a lot of ways she’s doing great but emotionally she’s a wreck and by extension so is the rest of the family.
I just honestly never thought that this far out life would still be so hard. She can be very sweet and loving but she is also demanding and often flies into fits of anger directed at me, her dad or her brother. Her noise sensitivities are making life in our home unbearable. Most of the time we can’t eat with her and we avoid doing things (just normal stuff like typing, talking, breathing) that will set her off. We have tried a number of techniques such as the noise cancelling headphones -she associates those with school and doesn’t want to wear them at home-, getting her to leave the room when she’s bothered which is 50% effective, asking our son to change some habits etc. We’re actively seeing health professionals to get her help but the process is slow and she doesn’t really buy into the fact that she needs to actively be part of the solution. It’s wearing us down. Has anyone experienced this and found peace?

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It sure sounds like you have had an exhausting go with this. I can’t speak much from personal experience in a situation similar to you. I can only speak from some of the things I have read about brain injuries effecting behaviour and ways to manage that. A brain bleed can cause behavioural shifts and changes, often varied by location within the brain. I would imagine it is quite scary to see these behavioural changes, and certainly worth researching what is available. I’m on a site called brain injury awareness and that often provides insight and suggestions. The fear as well would be given the age and maturation process that she is likely struggling herself in many ways, and ensuring that aspect is considered. I wish I could be more help, I would be researching all aspect available. Do know that you have a large community here who support you. The you is an important piece to ensure is healthy as well, including in long difficult mentally draining situations. My hat is off to you, and the way you are facing thee challenges. I imagine some other folks with perhaps personal experience will pass along their observations and experiences. Take Care, John.

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@AllieG Hello and Welcome… Before my stroke I was diagnosed with Meniere’s disease and even before that I knew that certain sounds really bothered me , my mom and my sister- I figured these were learned behaviors ( was a psych and business major in college) anyway when I got meniere’s those same sounds still bothered me but they mad me angry super fast. I guess this is common in Meniere’s. Sadly some music my husband loves has this effect on me…anyway he has learned to listen to it with headphones on…
I worked in trading all my life where it was perfectly acceptable to tell someone to stop eating with their mouth open etc and to be very frank with people. I did try to go back to work after my stroke but the sounds light etc was too much for me . My sound sensitivity got worse and now I have light sensitivity which I never had prior to all this brain stuff. I have some other health issues as well - Anyway I personally cant stand anything touching my ears at all , maybe your daughter cant either. Being in the hospital for any length of time can cause PTSD as well not that anyone ever gets over it but a good therapist can help a person deal with it and just thinking maybe your daughter might have some PTSD from being in the hospital which are so noisy. I know it can be hard to find someone good for PTSD.( My younger sister spent two months in the hospital recovering from the flesh eating virus and also has PTSD. ) Its very hard being the caregiver. Since I have been on both sides personally I think its harder to be the caregiver. For me I really need to focus on other things so I picked up crocheting and knitting again. Sometimes I do free online courses that I am interested in. Does she have any head pain? Is she talking to a therapist?
Angela

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Hey I can’t speak specifically to your situation because every bleed is different, and I really can’t talk about peace intelligently either. TBIs, whether from an accident or stroke, do basically nuke the family dynamic. Obviously your kid didn’t ask for this, and it’s not at all her fault. Knowing this doesn’t make it easier to care for her, and doesn’t ease the strain on the family. The only solution in my opinion is to accept the reality of the situation, focus on your love for your family, and give everything you got to do right by each one according to their needs. You’re human, and will sometimes fail due to fatigue and depression, but put the failures behind you quickly and keep working. My kid’s stroke was nine years ago, and it won’t ever be easy again I don’t think. I see my mission in life as doing the best I can for everybody in the family, and I guess I find peace in focusing on that mission. But that peace won’t ever be easy. Sorry if this note sucks and makes things worse. At the least, I understand your family’s struggles, for whatever that’s worth.

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I can relate to feeling worn down. Progress for my daughter is also slow. My little girl dx with her AVM at 9 is now 11. She can be moody and demanding and gets frustrated and angry, primarily with me. She is still very sweet and loving, but at times impossible to please. As someone else posted, none of what of your daughter is going through is anyone’s fault and it must be really painful for her (and everyone else) to process all that has happened. I just wanted to say that I understand the pressure to make everyone happy. I find peace in giving myself permission to fail in this area whenever needed.

Two quick tidbits:

  1. My daughter’s hearing seems to be like a superpower. She can hear clearly at the lowest volume setting where the rest of us, hear nothing. Maybe your daughter would be willing to try cotton in her ears as opposed to noise-canceling headphones?

  2. Also, have you tried audiobooks? I have an Audible account through Amazon and there are so many good books. Maybe it would be a way to get her to wear headphones while doing something she enjoys? We use wireless / bluetooth headphones and they are awesome.

Sending strength & positive vibes your way!

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I can relate to what she’s going through. Back when I had my AVM rupture I was 10 years old. After all my surgeries and was finally back home I noticed that my hearing had increased. Doctors told me and my parents that this was possible. Main reason why is because I had lost my right side peripheral vision in both eyes. My right eyes vision isn’t perfect either. Some times I put a contact lens in. But left eye is 20/20. But how the hearing affected me is when I was in school. It’s never quiet. So taking a test was stressful and it took me longer just because my thought processing was a little slower. The teachers then gave me some help and let me go to the library. It helps. Did that all the way into college.

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Thanks, Angela for sharing your experiences. I’m sure she does have a form of PTSD and she has spoken to a therapist but needs a lot of convincing to stick with it. She was extremely sensitive to noises when we were in the rehab hospital to the point that I had a meeting with the manager of the unit. You would think that on a brain injury rehab unit a quiet environment would be top priority! Fortunately she doesn’t have any head pain. She’s had her hearing tested to see if it’s supersensitive and it’s not. But she definitely has a psycho-somatic reaction to certain noises and other circumstances play a huge role in her ability to tolerate or not such as hunger, tiredness, other distractions present. It just seems to be a work in progress.

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Thanks, DB. Good to know I’m not alone in feeling this way.

Thanks for sharing your experiences. We will definitely try the cotton in the ears. She does enjoy audiobooks at school during individual reading time so we should look into it for home as well. And it’s not easy to accept failure, is it?

Thanks, John. School is definitely a big challenge with the noise. Hoping she will have a better quiet place to go this year when she starts at a new school.

Hi Allie! I had to write back quick to say accepting occasional (or frequent) failure is really hard, but it is freeing afterwards! Just knowing that there will be times when our best isn’t enough to make things right. In truth, it’s not not really a failure, because the tasks are often out of reach. I continue to try, but when things still don’t go right, I feel more peace knowing I tried and less shame feeling like I failed. Another little trick I use with my daughter is aromatherapy. We use these little essential oil rollers and also have a diffuser at home. It’s not a cure for anything, but the scents are very soothing and if my daughter doesn’t feel well and there is really nothing I can do for her, I introduce the oils as a way of ‘doing something’ to make her make her feel better and it always helps pick her up her mood. We also have a little sound box I bought at CVS to help Liv sleep - it has 5 or so settings with different peaceful sounds such as rain, ocean, crickets etc. When anxiety is high and she is having sleeping this really helps. It blocks out all the background white noise. Maybe your daughter would benefit from something like this or even a fan blowing to introduce some white noise to block out more disturbing noises around the house. I’ve even used a tiny indoor water fountain in her bedroom with trickling water because my daughter thought that was really cool. I hope this doesn’t sound too hippy dippy, but when we hit rock bottom in my house it usually requires a sit down / talk it out where we write done all of negative feelings on paper and then burn them. It is kind of symbolic for the kids and hopefully marks a change in feelings or behavior. Right now, I am pretty close to burning sage in my house which is ‘supposed to be cleansing the house of negative feelings etc.’ - I can’t say I believe that burning sage really does anything, but my daughter has been looping on negative thoughts for months and I am pretty sure my ‘burning sage act’ will be meaningful for her and hopefully mark and end to what we are dealing with. We’ve already burned our ‘negative thoughts paper’ 6 months ago, which helped, but it’s time for more action! Wishing you & your family the very best.

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Miss Allie G My wife and I have been caring for our son now for 30 plus years since we found his AVM. He has several bleeds and has progressively gotten physically, mentally and emotionally worse. My wife and I know the wear and tear of being a care taker. Advice is hard to give to someone you do not know I will share what has worked for us. I do not know where you are spiritually but to consider our son as he is as a blessing from God and the trials that come with this as an opportunity has helped us. The practical side of this is also rest and down time away from all of it, to renew yourselves and prepare to resume the struggles placed before you.

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Hi Jilly,

Thanks for all the great ideas. I also love essential oils and diffusé them regularly in our house. Katie has a diffuser in her room and goes through phases where she uses it more regularly. I’m definitely going to make her some new roller blends for the return to school. She likes blending. I love the idea of burning the negative thoughts. We’ve written them down a few times or I get her to write down her “rants” so she doesn’t say the wrong thing to the wrong person but haven’t done the burning part. And we all have little fans in our rooms. I didn’t realize how much it helped her until we joined my dad to go camping and she couldn’t fall asleep without it! The white noise really helps.
I’ll keep working on being more forgiving of myself. It’s a work in progress, right? Thanks for taking the time to be so helpful.

Wow, I’m sorry to hear that your son’s experience has been so difficult. Fortunately my daughter’s AVM was successfully removed after two surgeries so she’s just had the one bleed although it was in the words of her surgeon, “catastrophic”. We honestly never expected that she would recover to the point she has and we definitely know that she’s blessed. Everyday I am thankful and cognizant of how lucky we are. But some days i really struggle with how others take the simple things in their life --going out to dinner with their family for instance–for granted. I’m sure you can relate only too well. I haven’t been away from my daughter for more than a couple hours in 2.5 years and I guess I’m quite burnt out. I also lost my mum to cancer in April so I miss her and her support so much. Thanks for your kind thoughts.

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@AllieG Just wanted to say we are here for you. This is a safe place and there is no guide book for the patient nor the caregiver.
In the USA we have caregiver support for each county via the Aging and Adult services and I hope they have it in Canada. Do not forget about yourself - care taker fatigue is a real thing.
I am 50 and I too get psycho somatic reaction to Garfunkel’s voice for some reason - My husband says he has perfect pitch but it literally makes me want to beat someone up instantly. I love Paul Simon’s voice.

Do you have a 504 well thats what we call it here in the USA for her?
I am so glad she does not have any head pain she is so fortunate in that way.

Hospitals can be so stupid about some things~ At Stanford they recently got rid of the pink bins that you throw up in for cost savings and now have small bags to throw up in…which is theory are fine except when you have to lay flat…they have also switched to cleaning with a vinegar solution but rates of infection have gone way up…geez I wonder why…

She is lucky she has you! Keep up the good work and each day gets better.

Hugs Angela

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