Hey there I’m two and a half years out from my rupture and honestly disappointed, my mom was told id make a full recovery upon awaking from a coma but im scared they just threw that prognosis out to give my mom hope because they said a year or two without really knowing what symptoms the AVM caused, i had just barely woken up and could only open one eye. Now its much later, im still confined to a powerchair, unable to roll on my side or even open my left hand. I decided to try hyperbaric oxygen therapy and it hasnt seemed to do anything, i think because my AVM was embolized. I feel hopeless, its like nothings changed in so long. My arms like some useless claw the tones so bad and i have a hypernasality so half the time i talk im misunderstood and people just nod their heads and smile so alot of times i just wont say wat i want to. My insurance hasnt covered therapy in a long time and im scared without the stimulation my neurons will die, ive been reading my stroke of insight and that gives me a little hope but also makes me a little jealous, although her cognitive functioning was hit way harder than mine, her physical recovery seemed so easy. But i learned im probably too hard on myself because much of my right brains gone offline and my critical left hemisphere has kinda taken over im just really scared i dont wanna be like this forever. How would my voice or my spasticity get any better? Is this the best things are gonna get? Any tips?
Matt, It has been 7 years since my rupture and I'm still working to improve.
I also read My Stroke of Insight and felt that her book gave me some advise, but I started to think why did she recover so well and I didn't. The reason is every case is different. We need to keep trying.
My tip is: Keep fighting, Matt and always know we are here for you! You are not alone.
Stay Strong & Positive.
I have had 9 brain surgeries now plus 4 strokes for every time another aneurysm ruptured. I also spent a week in coma and my prognosis was not good. I woke up completely paralyzed on the left side of my body but I NEVER gave up and forced myself to get moving and get living again. Now it’s down to just my left foot being paralyzed and I know I’m not the same person that I used to be but I have learned to accept and like who I am now. Because of the power of prayer and the Grace of God I am alive and doing well. You will too. Just never give up and have faith. This world is NOT all there is. It is so much more than we can comprehend. So keep your chin up and never give up and remember this: Any day above the dirt is a good day!! You will be in my prayers. May God Bless you and keep you well on your way to recovery. You will get better. Believe!
With much love and understanding.
There is always hope, I can tell you that. I’m not going to lie, sometimes it feels like everything’s pointless, and there might be no use battling on. But it is SO worth it. I’ll be praying for you. Just keep on keeping on. We all possess strength that we don’t realise we have, I can vouch for that. There is always hope. Just keep on going. Like I said, i’ll be praying for you
Hi Matt, My name is Lorri, I had a AVM rupture nearly 3 yrs ago, suffered through 2 crainotomies, first crainotomy, to remove AVM, had no eyesight in left eye, lost total use of left side, due to CVA after AVM was removed, I was told in a year I'd be better, but neurologist didn't explain that due to sutgury my nerves were cut and I'd never heal, its a rough life, I need a lot of help, can't be left alone, on seizure meds for life, but please don't give up, be strong, stay positive, pray multiple times a day, talk to people, explain your feelings it helps to talk about what your experiencing, good luck to you.
Oh I hear you. I am up here in Salem/Keizer Oregon and I go up to Portland Oregon for treatments. I am better to talk to people on the phone than me doing words, My eyes are bad. Just keep up buddy and do for yourself and do what is right. :)
Hi Matt Of course there is always hope! It sounds like you are still young. 1 1/2 years is still soon after your embolization. I am sure your body is still in it's recuperation stage. You still have plenty of time to make improvements. My last embolization was 12 years ago and within that 12 years I have made a lot of improvement. Although, I too use a power wheelchair, my condition is much better than it was 12 years ago. I know the insurance can be a real hassle to deal with since they do not approve much physical therapy. It is very frustrating to deal with it! Try to take it one day at a time and don't compare your progress to anyone Else's. You are you and your body will recover in time. Focus on the things that you still can do. I understand your experience, and I know you will have good days and bad days just don't let the bad days get to you too much. You found a good place on this support group. You seem really resourceful and I know you are on the right track to recovery. It is hard at first to make such major adjustments but in time it gets much easier. Just remember never to give up because there is always hope! And it will get better!
Hey, Matt - Thank you for being brave enough to admit you're disappointed. Sometimes in RecoveryLand there is necessary posturing - but you're keepin' it real - thanks. :) I'm 3.5 years out and still gaining. The first thing I often tell people is don't worry about comparing your situation with others'. Yes, of course, you want to learn from their experience, but often times, especially when it was too soon after I woke up to understand, it was just SAD :(. Also, I'm sorry insurance won't cover more therapy - that is so frustrating. I'm transitioning to a non-insurance funded Recovery and I do everything from squeezing Theraputty with my "bad" hand (maybe just try to hold it?) to learning stuff, like seated yoga and tai chi, on youtube. I can walk now, so I use an Anti Gravity treadmill and have found that improved cardiovascular health and a stronger core have really changed my carriage and how I use my voice - people notice it's stronger, and I make more appropriate use of the air I breathe (I have a nodule and vocal cord weakness). I bet anything you can do to get your heart rate up and concentrate on your breathing would help. On my blog's "New Start Here" Page I have a section called "Why I Have Hope" - if you drive around to the other sections you'll find plenty of stuff to make you laugh. This Recovery thing is not for the faint of heart. A strong funny bone is crucial. :) bye, atntPS. This is a picture of my horse, Ed, on his birthday - the anniversary of my bleed. Yes, I am an adult, and yes, I have a pet horse named Ed. He is super bossy.
Hi Matt. I’m sorry to hear your feeling this way. You’ve been traveling a very difficult journey. My son had an avm rupture and it just seems everybody has a different story to tell. I can tell you are a very strong person!! Keep the FAITH Matt and never give up!! PEACE and God Bless you and your Mom!
I am sorry you are having such a touch time! I had an avm rupture on my spinal cord, and bleed into my brain.After 43 days in the hospital I came out a wreck! I had to learn to walk and was so thrilled when I finally could roll over in my bed! It has been three years now, and even though I feel like a ticking time bomb, I squish that thought, and give thanks just to be alive another day.
You sound strong spirited to me so I hope you will keep fighting! Perhaps you could call your local hospital to see if some physical therapists have some ideas for PT, or maybe someone from the local gym would take you on as a "project."Call your local school district and see if some kindhearted speech therapists will work with you for a while.
Give yourself some slack!It takes a long time to repair. I'm not what I was, but I'm sure glad to be here in any form!Do NOT give up!Keep fighting!!I will pray you get some extra help. Keep in touch.Donna
Hi Matt, I read the book you reference too. Actually I read it 3 times because the first time, I hadn't recovered enough to comprehend the book. I could not read the brain section at all. Then, I could understand it a little better. Finally by the third reading I understood it and I was amazed that she was able to write about her injury for I have no or distorted memory of 9 weeks of my life when my injury occurred.
You have been given some great support here by other members including from my wonderful fellow moderator, Louisa. Matt, you will be in my prayers and I agree with Louisa that we are here for you so please reach out here as needed.
My AVM rupture and craniotomy was over 12 years ago and I had way less serious effects (my lower left leg and foot are somewhat numb, and therefore can't be trusted LOL)--I still get very frustrated once in a while. BUT most of the time, I can laugh about it.
As others have said, hang in there. You WILL get better over time, maybe not all the way better, but both your brain and YOU will learn to deal with things and adapt.
Wishing you all the best,
Thanks alot guys after reading my stroke of insight i realize im way too hard on myself and impatient cuz my left brains just become so dominant like when i first came out of that coma i wasnt even disappointed at all i was ecstatic about just being alive but its been like a gradual degradation of my spirit everything seemed new and exciting at first, i just had unrealistic expectations and hearing therapists and doctors say things like two years will be your peak dont expect more than that its just scary but ive been getting conductive education therapy all month, its uninsured, but cheaper than traditional therapy and honestly far better, my mom wants to lobby for it to be insured in the states!haha im not giving up tho theres nothing better to do but try, its just so hard seeing my friends move on with their lives like nothing ever happened but for me everything just stopped, it was all there, i took a nap and all of a sudden it was all gone. I think it stems from skateboarding too ive always been really hard on myself with that too and it got to a point where if i tried hard enough it felt like i could do anything, its frustrating to try opening my hand or bending my leg and it just not working. I gotta try slowing down im starting to realize i may have to give up a decade of my life to this its just scary, my left brain constantly is running in these neurolical what if patterns
Oh yea i had the same issue i got the book at least a year ago and had to read the first three chapters a couple times and kinda just got frustrated and gave up, ive probly read the brain section about five times now b
ut in the past three days ive read almost the entire book and im really pleased with that because before my injury reading was one of my favorite things to but since, my memory and attention span have held me back from reading an entire book so im trying to look at that as progress
Thanks for the reply, Matt, and yes indeed you have made progress and I felt the same way so I can relate to your observation. Actually, during the year after my injury, my husband would buy me People magazine because I could handle the one page stories. Then, I would pick up a magazine that I had read in its entirety but had no memory so I would read it again. I told my husband he could really save money on me ... lol.
I don't know how old you are, however I assume you are quite young. All the people on this site have gone through varying degrees of heartache regarding this awful rubbish that goes in inside our Brains and we all have gone through varying degrees of anguish. Everybody's prognosis is so different that reading every case that is posted their never seems to be any consistent prognosis which again is unsettling for the individual.
The one thing that is consistent is that we all can in someway understand what you are going through.
I found that, although very well meaning, those that are close to you, will try their best to support your emotions, maybe that is what the person did who spoke to your Mum tried to do.
For what it is worth, I have found that speaking with your neurosurgeon is helpful, as these guys don't pull punches and say it how it is, in a sympathetic way of course. Also I went to see, and still see, a Clinical Psychologist, who has worked with people with Brain injuries and therefore experienced in this field.
Your fear is completely understandable. questions of "what next" "where am I going" "is this it" are all questions I feel we have all asked ourselves. These are questions I have asked my psychologist and although there hasn't been any clear answers, I did find she gave me some good cognitive exercises that have helped.
One thing is Matt, that I do know from this is your Brain is a wonderful organ and how it finds other ways around things still amazes me. Its like "this roads closed I will take another route".
Take care mate. Although hard, just stay strong, do things that make you happy and be positive. These all may sound like clichés, but as you will find with the other guys on this site, its one of the best ways to get through.
Keep in touch and all the very best with your recovery.
Dear Matt, sorry to know how U feel, believe me, you are not the only one. I suffered a lot of damage, had to relearn many functional areas. Thru prayer, meditation, talking to family,even strangers help some, Music was really helpful, kept me from calling it quits. Hang in there, recovery takes time. Have patience and be thankful you're still alive.
Matt, there is hope. It may not seem that way from where you are now, but there is. I still had a number of struggles two years after my rupture and surgery. Sometimes, I wish that I have had rehabilitation or therapy, but I couldn't afford it. I still struggle with my speech, but when I look back on it, I feel it has improved, but I still have work to do. I'm certain that this will make you stronger. I hope you keep fighting. Best wishes to you.
Another great source is "The Brain that Changes Itself" by Norman Doidge. It changed the way my family looks at rehab. The only tip I have is to just keep working and don't give up. It is possible to recover.
Matt, I feel awful for you and for everyone else that has lost so much of themselves. I think there comes a time when you have to accept what is and still be hopeful at the same time that you will continue to improve. I know it sounds a bit negative, and I hear all the encouragement in other replies, but you have to be strong and say to yourself, if this is the best it's going to get,I can still go on living a productive life the best I can. You are still you to yourself and to everyone that loves you. If there is improvement, then that will be wonderful and take it as a gift from God or whatever, and as you can see, many people DO continue to improve over year--I hope you are one of them. My daughter is just a shell of her old self and I would give anything to have her back, but we have accepted her as she is now, and she has accepted herself, and we don't ever, ever give up hope that she can recapture what she lost, but we are realistic at the same time, and if that doesn't happen for her, then she will deal and we will deal. I know, it's so unfair, and I have had my years of crying why why why as did my daughter. It continues to be a struggle and the unfairness of it all weighs heavily on her and on us. No one wants to see their child or anyone go through this. The same can be said of many mishaps and diseases that strike down innocent people and come out of nowhere. Please take care of yourself. It is a good time to reach out for therapy to help you deal with what you are going through.Try and find someone who has experience dealing with traumatic brain injury. If you cannot afford it and insurance won't cover it, go to one of the free mental health clinics or group therapy. It's not something easy to deal with at any age but you have to keep at it. Good luck.