Waking up to a seizure, darkness, then the paramedics in 2009 was a result of my newly found bleeding AVM. The AVM was found in my right frontal lobe in my brain which has since lead my life a hazardous worry of twist and turns. I can walk, talk, but these headaches and seizures won't leave me alone. Coping with my issues with prayer, calmness, and positivity only enhances the nervousness I get at times helping others. I'm only 29. My bleed started in 2009. Everyone has heart aches and pain, but in my region of the U.S. sometimes it seems as if no one cares about anything unless they have their attention turned towards their loved one(s). Granted it is in the right frontal lobe area which controls emotions and some feelings. The brain itself controls all. I don't know, just looking forward to one out of many MRIs and angio's. Looking forward to one of my future, over due, surgery's. Can anyone relate to having an arteriovenous malformation in the right frontal lobe, seizures, medications. Can anyone give me advice?
Hi, Anthony, join our Frontal Lobe avms group: http://www.avmsurvivors.org/group/frontal-lobe-avms
Lots of great people there!
We also have a seizure group: http://www.avmsurvivors.org/group/avm-with-seizures-epilepsy
Yeah I had a right frontal & the resulting seizures. It sucks so much. But, as everyone keeps telling me, you gotta keep your chin up. It takes a while to get used to your new, less-than-ideal life, & I’m def not used to it yet, but we have to figure out how to live this way I guess…I don’t really have advice besides getting enough sleep to prevent seizures & just taking care of yourself. I’m only 22, so I know how much this sucks. You go from being a normal person one day, to being destroyed-emotionally, mentally, and physically-the next. You can do it. We all can.
Thanks. Don't get me wrong. I kinda like my new norm. It just feels so weird. You said that you are deaf. Wow. That must really suck! Being 22 I couldn't imagine the pain. I had my avm rupture in 2009 at 25. Now at 29, partially blind, but getting better, my treatment for this issue is taking seriously. I'm an ex construction worker/ previous and present college student. The irony can be humorous, but agony was an effort of survival. I hope the best to yo and thanks for your kind words. Actually those principles of words you spoke of are very true. We must adapt to our newly found reality. Just gotta do it and like it. We all can do it.
O I’m sorry, I actually was using “def” as an abbreviation for “definitely,” so it’s not quite that bad yet. The only real physical problems I have are my limp, my complete loss of left side reflexes, left hand problems, and occasional loss of feeling in my left hand/leg. Sooo way better than being deaf
Lol It's ok. On a positive note, things will get better for you! I was living in the Roseland area by Notre Dame when my bleeding occurred. to make a long story short, I ended up getting help from the University of Illinois. My physical trials and errors come and go. My left side of my body is much weaker than before, but better. My eye sight is safer now. But yeah, things can be worse. How are you able to cope with the loss of your left reflexes? Mine left reflexes struggling too. I've been sent to have a reflex test done and it showed!
In my last year I discovered one AVM in the same place as you. They had to make me two embolizations and craniotomy the month of June but was suspended because one of the doctors broke his leg and no one else on the island where I live (Mallorca) to do so. Now, almost a year later I have an appointment in January to see who decide.
My AVM has not bled thankfully never time and have never had any symptoms, so I'm not sure if you have surgery or not.
I am very active, I have not stopped playing sports, I keep running (slow pace) for an hour and I kite surf whenever I can. I could not live without my favorite sports and why a doubt about it, because I do not guarantee it is 100% recovered after surgery.
You see, I have many questions ... If I can not I trade me look good, if I can I trade I have bleeding ...
Everything your doing to care for yourself is great. After treatment you should be able to regain physical strength in time. Just do no heavy lifting or any exerting activities other than which you can handle. Eat healthy and often. It's been almost 6 complete years and I've had 1 embolization treatment with medicine follow ups. I had to take my life into my own hands for a while! You will do great! Enjoy Spain! I will gladly answer any questions you have. The questions that I can't answer, in time, I will relay the true answer to you aided with my own true life experiences. Thank You.
Honestly my right leg kinda reaches across to catch me, but if I’m caught off guard, I’ll fall over, I.e.if someone runs into me or pushes me from my right side I’ll fall over or if I start leaning too far to the left, I just fall over. Can’t ride a bike or wear heels anymore, but I feel like I have a lot more to be thankful for than mad about…
Merry Christmas to all. My wife had in 2011 an AVM bleed in her left side of her brain real close to her motor functions. two years later she developed an edema and caused her right arm and hand to a 30-40 % usage. Therapy has not worked. She is now having Hyperbaric Oxygen treatment which is not a standard medical treatment by some insurances. But my wife is in with 4 treatments now and hopes it will help her.
My question also, has anyone gone on disability or permanent disability by your aliment?
My wife has taken this hard,where she wants to work.
Our prayers to you all and keep strong.
Hi Andy...I had an AVM rupture in December of 2007 on the left side of my brain, as well. Because of the damage because of the rupture, I am on disability. Like your wife, I became very depressed that I could no return to work as I loved my job. You may want to contact an attorney that specializes in Disability cases. From what I understand, having an attorney will it much easier for her to be accepted. Hope all goes well for you and your Wife! Merry Christmas as well!
Hi there. Did you have to get an attorney? Was that long term disibility or social security? Why wouldn’t the doctors report be sufficient? We don’t know where to start. She is on short term disibility now but our doctor says no more treatment because it is not working. Any info on this is very appreciated.
Andy, I don't have any idea why, but my long term disability was approved the first time I applied by myself.
However, there are other members on this group that were denied and that had to get an attorney to help them. To my knowledge, the information sent by their doctors was the same as what my doctor sent, but didn't get them approved. Disability lawyers didn't charge anything until she will be accepted for disability.
You could apply and perhaps you will be approved the first time, but if not, then an attorney can help you. However, from what I've heard, it takes about 2 years if you aren't accepted the first time.
What I am saying is that I was lucky...is seems that having a Disability Attorney makes it much easier for most people.
We want to thank you for your quick response and information. My wife is so worried. Getting a disibility attorney is it the usual fees of 30%? I guess that comes out of our pocket. I think what yoi did with an attorney may have sped up your claim. She is on 3 mos. Short term now and the insurance told us she has to serve out the next 3 months before going on long term. My thinking is that once she is on long term for two years then we have to apply for social security disibilty. Does that sound about right?
There is help here on the Network..It started after I went through applying for disability, but give it a try.
By the way, I'm on social security disability. Does your wife's company have long term for their employees? If so, she could apply for that and then if it is over in two years, apply for social security disability.
I would us this for correct information: http://www.avmsurvivors.org/forum/topics/disability-claims-a-breeze-with-new-ben-s-friends-partner
Yes through her company she is on std and will move on to ltd. After that we are hoping social security. I guess that’s when we file for SS correct? Thanks for the tips. It is a scary situation when no funds are coming in. Have a Merry Christmas and New Year…
P.S. Has your avm gotten better and your side effects? Our doctor feels that my wife will be on seizure meds forever.
Here is their site, Andy:
Yes...the side effects have gotten better over the past 6 years..I have been on seizure meds and will be on them for the rest of my life as well..
I just asked you to be a friend..If your wife needs any more information, please ask her to be free to ask.
If you look me as a member, you can see my profile.
As soon as we get home tp our real computer instead of my android cell we will add you as a friend and keep in touch. Thanks again