I am currently unemployed because of my condition. I was diagnosed to have AVM on the right side of my brain. I don't know how to adjust my life in such condition. Is there anyone who can enlighten me in re-estaablishing my life again with good vibes.. It seems like no one understands what I've been through ..
Hey Cyrus, stay tough out there. I don't think anyone's going to be able to tell you a magic solution or easy answer. I think it's up to you to stay positive.
Early after my diagnosis, in my delicate teenage years, I decided I would not be defined for the rest of college as "the brain tumor kid." While truly motivated by peer pressure, I think this idea has served me well in the 10 years since my crainitomy. Although I'm completely bald now (other, natural causes) and bare my scar around every day, I refuse to be "the guy with the scar" or "the guy who had brain surgery." I just don't carry myself that way.
If some one asks about my scar, I say "shark bite", "I don't remember", "sky diving accident", "avalanche" or "bad sexual experience." That last one shuts everybody up!
I'm fortunate that I was never physically debilitated. So, I can't speak to that. But, remember that sympathy is awesome. People are nice to you for no real reason. BUT feeling bad for yourself is not awesome. It creates negative vibes.
In sum, stay tough out there. I think it's up to you.
Thanks for sharing your thoughts on this.I am glad that some other AVM survivors share the same experience as mine. But you know what,it's been 4 years since I had craniotomy. Apparently, I'm still struggling in adjusting my life because of my physical disability .
I am a Nurse by profession so, it is very unfortunate for me to have this kind of condition..Yes, I might having a hard time but people like you make me inspired to hope again. Knowing that I am not the only one who had this.
Hey Cyrus,
I want to tell you that you should feel so gratefull for having "just" an avm, as stupid as this may sound, believe me is the truth. I know our condition is sooo difficult and our lives changed forever, but if you look out there, there are another people with so many problems that we cannot imagine.
Think how blessed you was to have survived, and to have recovered so much, and i am sure you will find the strenght to move on beautifully.
Cyrus,
I am a caregiver to my son who had a ruptured AVM in September and, while he is doing well physically, he continues to have difficulty with speech, reading etc. he is an accountant by trade and we encourage him every day to stay positive and focus on the goal of returning to work. I would echo Cap263's advice to be positive and keep a sense of humor, although I'm sure that's easy for me to say. Additionally, I am reading a book that you might find helpful, it's called: My Stroke Of Insight by Jill Bolte Taylor, Ph.D She is a "brain scientist" who suffered a large AVM rupture and sheds her insight into the process and recovery.
Please know that my thoughts, prayers and positive energy are with you as you make your journey to recovery.
All the best.
Bojo
Cyrus,
I'm sorry to hear you're having trouble adjusting. You might want to contact your doctor and let him know you'd like help with some of the issues the craniotomy and avm have caused. He (or she) will be able to recommend a neuropsych - someone who specializes in patients who are dealing with neurological or physical deficits as a result of an avm or treatment for an avm.
They see people like us all the time; people whose lives have been impacted by an avm and who are trying to work through challenges very few people have to face. Your local hospital may have an avm survivor group as well, and your doctor or the neuropsych would be able to let you know when and where the group meets.
Feeling like no one around you understands can be so very tough. Even when people mean well, it's difficult for them to fathom what it's like to be unable to do things other people take for granted. Take some time to look through some of the member profiles on this site, and I think you'll find that there are a lot of people here who know how touch it is to live with an avm and recovering from treatment for an avm.
And keep us updated - let us know how you're doing so we have a chance to offer support!
Hello, my name is Cody. I know what your going through. I have an avm on the left side of my brain. I’m open to discussion and I would love to share my experiences with somebody who’s going through a similar situation.
Cyrus,
I was originally diagnosed with MS. Ten years later they found an AVM in the cervical area of my spine. In the 10 years that I was being treated for primary progressive MS I have slowly become more and more disabled.Then they found the AVM. (I don't know how it was missed for so many years I had tons of MRI's)I had surgery on the AVM and survived! I won't regain the mobility that I have lost but now I won't progress any further either! This is huge for me. I was a Respiratory therapist and my career was well on the way. But just can't do the job. BUT I am very grateful not to have MS. I don't get up every morning wondering if this will be the last time I am able to do something for myself. Sometimes it's hard to deal with my disabilities but I am trying to focus on my abilities.Which are numerous. I honestly think that's the key. Focus on what you can do, not what you can't.
Only the best wishes for you.
Robyn
Hi Cyrus I would like for you to know that its okay to feel sorry for yourself! Just don't let yourself feel that way too long. It's natural to have those feelings when something bad happens to you but the danger lies in becoming consumed by those feelings such that you can't see the positive things that still exist for you. My daughter was diagnosed with her AVM when she was 12 years old. The diagnosis came after a severe bleed. My beautiful child went through three years plus of horror. She was even blind for a full 18 months. I never got my beautiful daughter back. The experience altered her forever. She was left with severe physical disabilities and suffered through her teen years being bullied by the hideous children in her high school. But you know what - I now have an even more beautiful 20 year old daughter who just started college and so far has gotten straight "A"s. I couldn't ask for a more kind or generous human being for a daughter. I allowed her to feel sorry for herself. She deserved to mourn what she had lost! But I also encouraged her to be thankful for what she still had - her life! So long as there is life there is opportunity. My daughter eventually realized that she had talents that she could put to good use and that the people who tormented her in high school were a small minority compared to the people who could see past her physical limitations and appreciate her beautiful mind and outstanding personality. That's not to say life is perfect, she still has occasions where her disabilities frustrate her or where people stare at her but she handles them much better now. And you know what - life's not perfect for any of us. I know this isn't very eloquent but I just wanted you to know that its okay to feel the way you do, just don't let it define you. Good luck and God Bless you!
Hello there John keep you head up I know its hard times but you got to stay strong..
me like you I was diagnosed with a 4cm AVM on the right side of my brain as well, Of course I was scared at first I have four great kids and a lovely wife to and I needed to continue supporting and provide.
I was diagnosed on may of 2013 and decided to have it removed, I ended up having 5 Embolization's
and a craniotomy on may 15 of 2014, seven months ago.
I am back to normal and with a really cool scar on the right side of my head.
it all was really emotional for me and my family, it was hard times. embolization's was harder for me than the actual craniotomy since I had two hemorrhages after a couple of the embolization's, it was the worse pain I felt in my head ever, I was kept in the ICU for a least two weeks after each hemorrhage.
After spending a lot of time at the hospital last year due to the embolization's I was able to get to know all of the doctors and nurses at the hospital, and I was really glad to get to meet great doctors while this was all happening, so when it was time for craniotomy I was confident and with lots of trust that it was going to be fine.
now I have returned to work hard to provide and serve God and My family
my headaches are gone, I had severe headaches all my life and now I feel great now and I don't take any more medication.
God will be by your side at all times specially while you are going thru hard times.
Pray as much as possible it will keep you strong to know Jesus its at your side while this is all happening and there after.
Hey there im Michael 45 4 kids and was a selfemployed gardner for 22yrs.I had a bleed on the left side of my brain causing my entire right leg to have no feeling.I had a crainiotomy to fix the avm and remove the blood clot.I still have no feeling from mid thigh down.So I can drive,no longer work and have become a stay at home dad.It has been a hard transition mentally and financialy.We have made a lot of adjustments and im still learning my new roll.Mostly I just remind myself how lucky I am everything went as well as it did and how thankful I am for that.So I do totally understand what you’re going thru and its not easy.Hope you are doing well,Michael
My AVM ruptured on my right side causing me to not be able to use my left hand, my left leg is not fully functional and vision loss means I can't drive. I went back to school though.Patience is key along with adapting. I found ways to just do things that would usually take 2 hands with one. Nobody told me how to do this I just decided I wanted to do some stuff so I figured a way how. That's really all I can say. Nobodyy can make you feel anything its a conscious effort by you. Can choose to feel bad about yourself and do nothing or find ways to get done what you want. You're not dead. get movie!
I can feel for you my life has not been easy since I had my brain surgery dec 20 2013! same type of AVM in the same side of my brain but I had a bleed from mine I have been in and out of hospital been diagnosed with diseases that I did not have the doctors put me on meds that I did not need I have been suffering with health problems for about 15 YEARS SO IM trying to get a attorney I feel I need justice! SO chances are you might be able to get a to fight if you suffered like me its worth looking into I hope this helps! God bless
Cyrus, you have received some great advice and encouragement from many of the members on this site who can all relate. Everyone struggles to some degree with their AVMs regardless of location. Those who don't, well, they are extremely fortunate and truly blessed. Then there are those like you, some of the others on this site, like the ones who have responded which includes me, who have had to live with complications caused by our AVMs our entire life. The good news is that we are alive and can still experience life albeit many of us live with constant, chronic pain, the daily threat of another bleed, and side affects which can greatly alter the quality of life. However, at the end of the day, we are alive and can still live a good, fruitful life. I will turn 59 in a few weeks and experienced my first major bleed at the age of 11 from the inside of my mouth from a molar on the right side; I nearly hemorrhaged to death. My AVM, at that stage of my life was in eth right side of my face affecting the inside of my mouth, lower lip, right jaw, ear and neckline. At age 15 when the doctors determined they had to do something or I wouldn't live another two weeks so I underwent major, lifesaving surgery. Needless to say that event has influenced my life up through today; life for me has never been the same as other men my age due to the AVM. I was teased and bullied and even today people will remark sarcastically about my scars and make a comment to me about having a rash on my face, neck, ask me if I am chewing tobacco (due to the swelling or fullness in my face/jaw) etc. Since age 11 I have had numerous medical tests, studies, surgeries and surgical procedures conducted on me all related back to the AVM. Worse, over time as I have aged I have developed other associated ailments which bear heavily upon me, wear me down at times, but I refuse to let it stop me from being who I am or want to be (within reason). I say within reason because, for instance I use a cane daily due to balance problems my AVM causes me, my vertigo is always off; when I walk I feel like I am on ship at sea swaying back and forth. It is all caused by eth AVMs growth within my right ear, et al. I hate using the cane, but I do. I found out that most people don't even notice it; I am the one who becomes self conscience over it. For your info I am a retired Soldier, former Airborne, Ranger, Pathfinder, and Infantryman... ironman and so forth so it is especially hard for me to accept using a cane. it not your ordinary cane either as it has one of those big quad bases to provide me extra stability as I am on Coumadin for life now so cannot afford to fall and hit my head. Bottom line, I am learning to accept it. I agree with what Shirl told you that it is OK to feel sorry for yourself at times, have a quick "pity party" as Shalon used to write and then get on with focusing on your abilities like Sisroba suggested. I share all this with you because I thought during the time while I served in the military that I was cured. I had symptoms that I simply dealt with, ignored or worked through keeping them from my wife, bosses, etc. However, on the eve of my retirement I learned that I was never cured, my AVM had regenerated and this past summer learned I now have two, one growing on the opposite side of my face and head. I have gone on for way too long, keep up the fight and know you can have a good, productive life despite the AVM, don't let it define who you are! You will always have this support group here for you, cheering you along, and please know you are now on my prayer list. Regards, Steve
Great step coming to this site. Having a support group is one of the best things you can do. My husband's AVM ruptured 15 months ago - don't know how we'd have made it without the support of our church family - don't know if you have a church. And this site helped us very much as we read of folks who had been through the same thing. Spent many hours here on this site.....
Know that there is a brighter day - and you are not alone. Some days seem that way, but the sun's coming up in the morning.
Hi John,
Sorry life has been tough. Life with this is to put it mildly a challenge.
Sometimes adversity is all about how you cope - it can make you stronger, more tolerant and forgiving in the long run and all thos things are good things to have, just try to remember that. I have found that just going through the things you are grateful for once a day helps me - it may be your family, friends, things you have enjoyed in the past, music, a sound mind, this site even.
If you are unemployed that can be bad news but it can also be a valuable time for introspection, time to trry something new, like meditation or CBT to help you cope. Sometimes life forces these things on you for a reason, a little time to think and stand back, get to know yourself, forgive yourself, get out of the rat race. So, despite your initial thoughts it can be a breather, time to get rest and time to work things out, so it can be positive in ways you didn't first think.
I started this process thinking it was a disaster but there are some positives I am sure. Try to relax and see them if you can.
All the best to you
Chris
Hi Cyrus,
It is normal to feel sad and uneasy and having a difficult time to adjust yourself.
Just remember to have trust and confidence in yourself.
Take time to look through some of the members' experiences and do share your thought with someone you trust(someone thinks positive); never share your feeling with someone that always thinks negative.
You will find that lots of people do needs time to get back to normal and the day will come for you.
Stay positive and post your thoughts on this site and feel free to share your feeling with us.
God Bless!
Lilian
Cyrus, I wish all the best and will share what I have. I had an AVM in my right Parietal lobe slightly above and behind my right ear that we “monitored” it with no changes for two years before it started to leak causing a hemorrhagic stroke. The neurosurgeon resected it literally in the middle of the night managing to clip the artery and remove the rest. His skill along with God’s Grace kept me alive. I awoke several days later with the brain maps for most left-side movement erased. I do oupatient therapy PT then OT weekly and have someone trained in both come by my home weekly. My stroke occurred July 31, 2013. Today, PT is helping me start to use a walker apapted to hold my wrist-hand orthotic. My wonderful wife of 32 years helps me walk and do some stretching and other exercises at home in between therapies. Looking retrospectively, I wish I would have gotten a second opinion on whether to monitor or opt for surgery (Those were my choices then. My Neurosurgeon told me it was close to the surface and vewry operable, but said I could wake up with left side motor issues. The AVM was on the upper end of medium sized(approx. 3CM on the Spetzler-Martin scale, but resided on an eloquent section of my brain- motor cortex. I recommend getting a second opinion if it is dormant, what is your doctor recommending? Sometimes they can embolize them. They tried that for me that night, but could not stop the bleeding. It took 6 units of blood to get me through the surgery. I would advise you to get another Neuro to look at it and give you the alternatives with consequences. For instance, Mine was discovered accidentally when I was 55. The doctor told me that most of the ones discovered later in life like mine would be there when you died, which was supported by some research I did, but there is always a risk of rupture. He showed me the Angiogram, and we discussed the risks. I told him I was very active( I refereed basketball and did a group workout at our local gym. He said to stay in touch with my body(We monitored BP at home and it was always good, but otherwise I lived my life. The stroke took us by surprise (I was at the gym wqhen the leaking began) and changed our lives, but my wife and I have vowed to work together to do whatever it takes to see us through recovery and are looking for God to use us for some purpose later. My therapists believe I will walk unassisted again. Have your doctor arrange for another opinion out of your immediate area. My Neurosurgeon told me that many in your vicinity will have likely been mentored or otherwise taught by the same person or people, so go somewhere away. Cyrus, you have to discuss your concerns with a highly rated Neurosurgeon, do some research, pray for wisdom and guidance if you are so inclined and continue to live your life. I wish the best and hope this helps. Be well,and be blessed.
Mike
Mike
Hi Cyrus. I know what you must feel. I am trying to start my own business because I haven´t been able to find a job. I live with my parents and thank God they are very special and have always been there for me. I want to work and to be independent. I am usually optimistic and positive but I have moments in which I feel sad and frustrated. I try to look at the bright side and keep open to the blessings that God has for me. I am also grateful, that is how I deal with the hard moments. You can count on me. I will hold you in my prayers. Please feel free to send me a message whenever you want. Wishing you my best. God bless you.
Hey there. My wife has just had surgery for an avm. Just wanted to say there is light at the end of the tunnel, add me as a friend if you would like a chat