Oh thanks ill have to read that sounds good im also considering ordering “understanding the brain” on dvd dr. Bolte taylor mentions in her book that it details the plasticity of the brain really well have you ever heard of or seen it?
Hang in there Matt! I had a rupture in my brainstem in August. It is so hard sometimes, some days harder than others. I too went through a period initially where I just felt so happy to be alive but as time went on and reality sunk in, I became more and more discouraged.
There really is no way of knowing what our brain will do, if or when our bodies will heal, and what will be permanent. I have been learning to live and love my life with all the changes- I don't want to waste my life away wishing that I was back to "normal". I have been seeing a therapist who has helped me find joy in the journey. This site is also a great resource for hope, as well as close friends and family, and my faith in God.
From my past experience of working in a hospital- Don't you give up! Stay strong mentally- your body will hopefully follow.
Keep in touch- there are many people on this site that are willing to lift you up when you are feeling down.
Dear Matt I hate to say this but you yourself will have to fight for yourself. Don't depend on any help from the doctors. I would join a gym if you can and see if someone could go with you to the pool. If you have someone who could do that maybe you could get in and move as much as you can. This will start to help you little by little. Or buy five pound weights and hold them up if you can anything to move to the best of your ability. I had to do that when I got out of the hospital. But little by little I did it. I will pray for your healing and send you love and hope.
Peace,
Justice
Matt never give up hope I was 22 when I woke with a banging headache then started to lose feeling in my left side a doctor came thought I had been drinking told me to get up but when I fell over he called an ambulance I got put on a heart ward and was asked for hours if I had pains in my chest no I said just got a really bad headache and can’t move my left side they sent me home the day after saying you’ll be ok I had been home a couple of hours then the next thing I remember was waking in a different hospital I remember very little except a doctor on call walking past my bed and asking my wife what happened I remember the doctor saying he thought he knew what was wrong but a lumbar puncture was the way to confirm, he found blood in my spinal fluid I had an AVM,I was sedated they told my family I may die that night I found out later the following day I was rushed to Salford royal teaching hospital sedated every two hours for a week went through 4+ hours of surgery had stainless clips put in which means I can’t go near an MRI machine but i survived i will be having my 57th birthday soon it left me with epilepsy I got the feeling back but have since had hydrocephalus,gamma knife for another bleed,a stroke in 2006 and just had a titanium plate put in because the bone never healed properly. But most of all I survived I kept fit healthy I’ve seen my children grow I’m even a grandpa now. Matt life throws some real curve balls I tell myself I got a real good number or I’m wanted here for other reasons after the stroke I got down but there’s people a lot worse than me or you so chin up mate people love you smile everyday there will be ups and downs but they make you stronger.My goal live to 100 at least. Lol
Good advice for anyone, not just for those with an AVM.
Wow wat a story! You seem to be thriving tho , i just dont know about the living to 100 part im only 19 and hope to die by 75 haha
I have a friend on here who was unable to write after her AVM episode, but she never gave up. It took her five years, but she finally accomplished that goal. One of my former bosses had a stroke several years ago that left her paralyzed on her left side. A couple of months ago, she was able to move her left leg. I also had my own AVM miracle. I had an AVM removed from my neck. I was kicked out of therapy because I wasn’t making any progress. So each day I would wipe down my shower in order to increase my range of motion. It took few months, but I finally was able to lift my arm again. When I went back to my doctor and showed him that I could lift my arm, he told me that he privately felt I’d never be able to lift the arm again. So keep trying, and when you get discouraged, come back here to get the energy to keep trying.
Hi Matt. HBOT seems to work better with ischemic strokes than hemmoraghic strokes. AVMs bleeds are hemmoraghic. I love the fact that you are exploring all avenues of recovery. That indicates to me that you have not given up. It is perfectly natural to be frustrated. Recovery is a continual process and in some instances it takes a very long time. I know a woman on FB who told me that she has started to make some progress almost 18 years after bleed. She started yoga and doing some physical training with a personal instructor.
I believe as long as there is life…there is hope!
Matt, Dude, there is always hope. My AVM ruptured in December of 2004, right before Christmas. I was told I should not be alive and the closest BIG hospital around wouldn’t even come get me because they were sure I would die either in transport or as soon as I got there. My Dr. called Duke University and they said they had the greatest neurosurgeon in the world, so they wanted me to go there. I get there and they give me a few options. 1 was to do nothing and wait and see what would happen. Not my idea of treatment. 2 was embolization but if they made the slightest tiny mistake I could be paralyzed for the rest of my life. Uh, next! 3 Radio Static Therapy. With that the AVM would shrink die dissenting rate within a year. That sounds much better, let’s go that route. Meanwhile super doc put in a shunt because of fluid buildup. They tried to keep me over Christmas, but they weren’t doing anything so my wife checked me out and surprised my 2 kids on Christmas Day. Wound up back in hospital the day after but it was worth it. Kept getting horrible headaches and while at a visit at Duke I told them and they advised me to go to the ER. I’m thinking I am in the neurosurgeon part of the hospital complaing of headaches and they send me to the ER. Well after an 8 yes (EIGHT) hr wait they finally get me back. They call up super doc and ask him if it might possibly be the shunt. He advised No, if it was the shunt he would be having excruciating headaches, give him Tylenol and send him home. Student er doc came back in room when headache hit, grabbed his arm and bed rail. By the time the headache was over bed rail was bent and er student said, I think you broke my arm. Went and called doc again, he said shunt is fine, GIVE HIM TYLENOL AND SEND HIM HOME!!! I said no Tylenol because I know how much you charge for one and I have a bottle in the car. After months of searching and getting my primary Doc to call in a favor, finally got someone else to check shunt and was put in hospital that night. Shunt was nowhere near where it should have been. Went back for check up appointment at Duke and found out super doc was not as good as he made himself out to be, they let him go, last I heard he was in CA. Anyways after 10 years AVM has not shrunk, has not died and is still here. I have bad days and then I have horrible days, you come to appreciate the bad days. I am an eternal optimist. I take pain meds for the headaches, they don’t go away but they keep them to a dull roar most of the time. My wife says they don’t help, why keep taking them. Well the last one didn’t, but the next one will. I don’t sleep well so I take pills for that. My wife says why, they don’t work. The last one didn’t, but the next one will. I’m not sure how today, or tomorrow or next week is going to turn out, but I have hope that it will turn out ok. Yesterday wasn’t but today will, and if it doesn’t tomorrow will. Never give up hope, there is always something to hope for and to look forward to. There were times when I was losing hope and wanted to give up, but now I am gonna be another father in law to a great guy who is marrying my baby girl in December, and I am going to be a grandfather in January, to my son and daughter in law. Not sure how I looking towards that, I’m too young to be a grandfather. But there is hope that I will turn out to be a decent papaw or papa or pipi or whatever she decides to call me. Not hoping for pipi, but hoping that she is healthy. So never give up hope, I never planned on living past the age of 29, but the Lord had other plans for me, even after this AVM, he has plans for me, so I’m hoping to figure them out one day. Keep on hoping dude, and if you need someone to talk to message me and I will give you my phone number and we will hope this out together. Hope on Matt!!!
Matt I had two strokes. It took 6 months before I could see the color purple. I still have numbness in my left side. My vision is still an issue but every day I keep pushing forward. After both strokes I had to relearn how to walk. It must suck to have the issues you have but keep pushing forward, and remember that someone else is going thru the same crap you’re going thru and is looking to you as a positive role model to get thru it.
Matt,
I suffered my hemorrhage sixteen years ago; I wasn't diagnosed until I was flown to a university hospital where upon stabilization, I was taken to the operating room to remove the malformation. Back in the day, the internet was new and the only way to communicate was to write or talk, and I couldn't do either of those, I couldn't even remember my great grandmother had passed away, it had been eight years since her death but I awoke knowing she was alive. My point here is this: Everyone is different some people recover quick and others take years to remember to even learn what they were doing the day they "got sick" like I did, I am still remembering little details of my old life. You're fortunate to have gone through this in a time where you may express yourself better even easier. Don't give up and keep trying.
Hollie
Dear Matt,
I am sorry to hear of your daily struggles. My prayers go out to you. What I hear in your story hear is perseverance and that is awesome. No matter how hard things are for you, you are still plugging away at making some awesome strides.
I had an AVM and it took nearly 10 yrs to shrink. I am an epileptic and finally got the right Rx to help with seizures. All I can say is God Bless You and my prayers are with you.
Take Care,
Sherrie Kelly
Hi again, Matt, I read the book about the brain changing itself and yes it is an interesting book. Actually, I read about 4 books written by AVM survivors and I just ordered 2 more brain help books. I was an avid reader before my injury and now I've returned to reading fiction but at one point I was only reading non-fiction about brain injuries! I hope you are having a good day; the sun is shining here although it's cool but hey it is autumn.
Hi Matt,
I didn't think that I would recover, or even live out the year but it happened, and
I hope it happens for you. The doctors don't know everything. Some recover that
they think will soon die and vice versa.
My prayer for you is for complete recovery. It can happen.
God bless you.
John
Love your post TJohnson320 and wishing you the best and congrats on the soon to become PIPI, papa, papaw or pop pop.
My heart goes out to you! You are not alone. My husband (also a Matt) is my caregiver. We use the word renewal rather than recovery. There is no place for me to recover to, rather I am a completely new person. My AVM was the source of my stroke 9 years ago. It takes time. I tell people we can do everything we did before, but it looks different. I'm going to give you a wordpress url (http://evangelineuribe.wordpress.com/) that I post every month. It's my own way of communicating. I know what you mean about people nodding. And I am really in agreement with the person who said be proud of the progress you've made!
Remain positive Matt. It is the only thing that keeps me alive. I'd explain my circumstances but I'd just seem a lunatic !
You are obviously a 'thinker' and can understand. My situation is similar but always remain positive.
You are a fighter to have got this far and you'll never give up !!!
I've dismissed too many that have posted here and you are the first I've ever replied to because I just read your post.
You are a good strong person.
Think of the good :)
I don’t know much about insurance, because my mom still does that for me. BUT, I get coverages sort of restarted every year. So, each year I ‘start over’ again with my limits on speech and OT. Maybe yours is the same. I split every session for a 1/2 of OT and ST 'cause that is what I need. My physical recovery came back but I have a really hard time with memory stuff. 2 things I can tell you about:
- Brain Injury Alliance of Colorado has camps in Breckenridge, CO for Brain Injury Survivors AND they offer scholarships. They can accommodate almost anything. I went and am so glad I did. We kayaked, did a ropes course, did hand bicycles walked around the lake, hung out listening to music and played games etc. and BOTH of my roommates were in wheelchairs and they did it all too! I was one of the 2 youngest but everyone was so nice and fun. I went back for their fall float trip.
- Check out the ThinkCollege website. You sound as if you don’t have as much trouble cognitively as I do. But, that is what I am using to get myself to college.
- I’m 19 if you want to get in touch exchange Facebook send me a message.
Oh nice ill look into it and after this new year they gave me 2 weeks of inpatient which really did nothing for me but ive been getting conductive education therapy at a lil over a grand a month and they do way more with me than traditional therapy and considering my insurance was paying 3 grand A DAY im just gonna try to keep getting conductive ed at least
As long as it’s not Pipi. My wife thinks that will be funny . I said if I’m Pipi then you will be WeeWee, so how funny would that be.