I can only say that you need to try and stay positive and keep your faith in God as there will always be light at the end of the tunnel...as hard as it is keep in mind that there are those worse off and that you have LIFE itself, which is precious...i believe God will find a way for you and will keep you in my prayers my friend...God bless!
I have similar experience like your daughter has. Many people never did understood what kind of life AVM patients have. Most of them torment people like us. But that will not stop me from living a quality life... Hope your daughter think the same way I do. Hope she is okay. Thanks for sharing.. GOD BLESS..
thank you very much Steve. I am thankful that I am not alone on this journey. There are people like you encouraged me to live on. Please continue to pray for people like us. You inspire me a lot.
thanks Chris!. Right now I am changing my career path, from a nurse to a teacher. I think this is the best calling for me. Thanks for sharing your thoughts on this.
hi angel, I feel the same way too. I am usually positive and cheerful but at times I feel sad and frustrated. I am living with my parents too. They are the ones who keep me living. Thanks for sharing..
Hi Cyrus, I like Dorina and everyone else's replies. Try to re-frame your thinking do you see a neuropsychiatrist? Go see one. It is super important to stay positive and also spend time doing what you enjoy. Ask yourself what brings you pleasure, what makes you smile, what do you enjoy. You headed your post 'difficult life' yes. But sorry if I sound bossy, maybe try seeing it as a 'different' life. You also stated first that you are unemployed. This may sound strange, but work comes in all shapes and forms - there's voluntary work, there's helping others, there's house work, working in the garden if you have one, all these are still work/ employment and an equally valuable way to spend some of your time.
Steve - thank you for your story. One thing that stood out to me though is that an AVM can grow back??? I have been told that surgery is the best option for my condition, and once the surgery is performed I am cured for life...
This does not sound like what you described though, I have not read anything yet about AVMs returning or regrowing after surgery...
Hi Mike - my AVM is also in my right parietal lobe and my doctor is recommending either observation or surgical surgical resection via craniotomy.
I am terrified about having surgery due to the risk of side effects / complications from surgery.
From what you described my AVM appears to be higher on my head than where your's was, but given what you have been through do you have any second thoughts about your treatment? Would you have done anything differently?
Thanks in advance.
to me the question would be whether they are giving you chance of rupture. Whenever I read of folks fear of side effects, my emotions jump in. You see, my husband never knew he had AVM - until it ruptured. I don't want to cause fear, while I feel it's a very real consideration that should be taken. My husband had a very severe bleed and stroke - had been the healthiest man I know. Now 15 months later, praise God, he said his first audible words yesterday. He's come a long way, praise God. HOWEVER - I wonder if we'd have known and been able to have the option of surgery (even in spite of the risk of some damage from surgery) could we have had a very much better outcome than long term coma, "quadriplegic", and so much we've gone through over a year that I can't begin to say. So it seems the risk of rupture should weigh very heavy - maybe heavier than possible complications from surgery. I have read some folks that say, I may lose use of my left side. I wish that's all that my husband lost - though of course I wish that he'd have not lost anything.
by the way, my husbands bleed stretched from right parietal to frontal lobe...
I as well am unemployed because of the after effects of my AVM rupture (profoundly reduced short term memory). I hope to return to some form of employment and have been on disability to bridge the gap. A lot of it depends on what impact you've had (assuming it ruptured). I'm in the process of returning to work (however slow it may be). My neuropsychologist has given me resources to seek out meaningful employment. I'd say it also depends on what your career was prior to diagnosis to help determine where you can go. Best of luck to you and keep your chin up.