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AVM Survivors Network

Recovery


#1

I had my AVM resection March 2nd 2016. I know the healing takes time. I am back to work and driving and what i think to be pretty much back to normal. I am on Lamotrugine for help with seizures. My fiance gets frustrated with me. He has been by my side through this whole thing and i know it is not easy for him. We talked about it last night and really went into what problems that are shown that i don’t always see that are there. I have a problem with concentration, my mind wonders so i don’t always listen when people are talking to me. (this is what annoys him the most) When i work, i am constantly having to focus and work really hard at it, so by the time i get home from work and i take a break then we talk, i don’t always remember our conversations and apparently don’t listen. It seems too the my anxiety and depression had worsend latley. There is a lot going on in my life right now but i use to be able to handel it. Now it seems like i don’t know how to control it or move past. I’m in my 8th month of recovery, i know the doctor said it would be a year before i’m fully recovered, but i feel like i’m taking steps backwards instead of moving forward in my recovery. Wondering if anyone feels the same or has any advice


#2

Hi Jazmine,
Had similar issues. After surgery couldn’t concentrate, memory was unreliable both short & long term. And a whole host of physical issues were left by the AVM I have. But within 2 years of therapy & determination I thought I was “back” to normal with some paralysis. Went to school 4 drafting, 3 jobs (each increasing in pay). Then after about 6 years, I noticed trouble doing my drafting job. Then I started noticing difficulties in my daily life. Then I walked into work, looked at my computer and had NO IDEA what to do! That afternoon I was sent home for good. My neurologist had been trying for 2 years to get me to step down or at least take a lesser job. There was always a chance of a “relapse” and I knew about it. I did not think it would be so complete. I was left at about a 17 year old level, better some days, worse others.
But through it ALL I’ve always remembered 1 thing, tomorrow is always a better day! And it still gets me through day by day. I’m thankful to be alive, but it’s not a walk in the park.
Stay determined to do better in every aspect of your life. Second by second, minute by minute, hour by hour, day by day. Keep looking forward! I have been doing this for almost 24 years and still counting.


#3

Son had AVM March 2014. He’s good most of the time but we have had ongoing issues with shunts. He has had several operations since. Poor guy is in hospital now. 8 months is very little time. Your fiancé is the one who needs to adjust. If you could get better you would!! You need a lot of support. There are good groups out there. You won’t feel so alone. Stay strong.


#4

Hi Jazmine, I am also still in recovery. Had my operation done 28 January 2016. I have also been very frustrated with myself lately due to not being my good old self. My neurosurgeon told me that my recovery will take 12 to 18 months. My AVM was 4.5cm in right frontal lobe. Just be grateful that your fiance and you can discuss the matter and he can tell you his concern’s. That means. He still cares alot for you. I am also struggling with my memory short and long term. I am also very tired :tired_face: in the late afternoon and early evenings due to “brain overload”. Not to mention my chronic migraines. These are things that I started realizing by myself. About 4 months after my surgery (with Fall and Winter) I started getting very sick health wise, due to my immune system being weak and it caused me becoming"paranoid". Wondering if I am okay? After I realised what’s going on, I had a change of mind. This will not get me down!!! I am still in recovery!! I have to go for my checkup in January 2017 and will have faith to be feeling better soon! Good luck and best wishes for you on your road of recovery!! Remember you are a AVM Survivor!!


#5

Hi, Hi! I am 4 1/2 year out from my surgery and I can attest to the same feelings that you - Jazmine and Angel2 - are experiencing. Fatigue, concentration, memory, anxiety, depression brought on by all the changes during recovery, and generally just not being “my old self”. I was in a long relationship with a good guy who was there every step of the way, but it was really quite hard as what I had was an invisible injury and I think after the stress of the immense surgery, there was a wanting on his part for things to just be better. I can also imagine that he could have felt helpless and resentful (I’m projecting a bit). I wonder if you’d both be up for couple’s therapy. It’s a safe space for both of you to get to speak and be heard. He needs all the support he can get as this is a lot emotionally.

I’d definitely encourage us patients to talk to someone as the feelings of anxiety and not-knowing what’s-what is really overwhelming, the sooner you can start hashing some of these feelings out, the better you’ll be in the long-run.

Best wishes!

Fiona


#6

Hi Jazmine. I did not have a resection because my AVM is too deep but I have had cyber knife radiation. I am on Keppra to help with my seizures. I also have problems with anxiety and depression. It seems to be getting worse for me too. I have also noticed trouble staying focused and I am always tiered. I have also noticed that it is hard to remember small things sometimes that have recently happened although the doctors say I don’t have any memory loss problems like short term memory loss etc. I am 7 months post radiation and I have been thinking about seeing a therapist or something for the anxiety and depression. Not sure if its from the seizure meds or just from everything that has happened. Just know that you are not alone. It can be really frustrating.

Alyssa


#7

Hey there,

I understand the how Keppra can make you feel. That is one of the 3 meds they tried with me. It did not agree with my moods. I suffered from anxiety and depression before i even found out about my AVM. They changed my meds because Keppra made i very worse and mood swings were the worst. Therapist is something i thought about as well. Unfotunetly my job schedule is not working with any times i am available to go. Thank you so much for the support and i wish you all the best.


#8

Anytime, and I wish you all the best and hope we can find some relief! Best wishes in your continued recovery. Reach out anytime
Alyssa


#9

Hello Jazmine, my daughter is going thru the same symptoms in addition to being Impulsive. I am sole care giver, but I am so stressed out from taking care of her. Don’t take me wrong, I just don’t get any relief time. I don’t have a social life. Being a single parent drains me of all energy and free time. My son has no patience, she talks his ear off. I don’t know how to help my daughter other than thru prayer. When she gets depressed, she talks about killing her self. I just found her a good friendly psychologist and she is happy. It seems like she is getting help. I am wishing to find ways to help my daughter live as much as a normal life as she can.


#10

@Alethea_Warrior @amcoffey There are multiple agencies who can arrange for some respite care. Your childrens mental health Bureau or Department of family services will arrange. What you simply need to tell them is either I get some relief OR she is your responsibility I can’t do it any more. I know it sounds harsh and I also know you would never abandon your daughter BUT the agencies will respond. The have lots of funding to keep things together (MUCH cheaper for them thna custodial care). Easter Seals in Houston can help you get the vouchers. Their PNO progran is wonderful (Parents Night Out) even if its just to go grocery shopping. Not sure in NJ, I do know they have the bridge waiver program. We like the day programs occasionally too. My wife loves the opportunity to take a bath and actually go to the bathroom uninterrupted.

TJ


#11

I can completely understand that you are stressed out. Anyone would be in that situation. I am happy your daughter is seeing a psychologist. I have suffered from depression even before my diagnosis and anti seizure medications can make it worse. I know Keppra did make mine a lot worse (ask the doctor too see if the impulsive symptoms might be a cause). There is help out there for more support. I wish you the best and please let her know she is not alone! Also don’t underestimate the power of prayer

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.