"Hey, I was diagnosed in 2012 with a Brain Avm. I didnt really overcome my fears yet and after 2 years I think Im ready to talk to others.."
Hi Stewii........great to know you overcome your fear to start conversations about your AVM.
could you please elaborate more on your situation...have the doctors asked you to undergo the surgery ?
I would love to be off emotional support & suggestions based on your situation & scenario.
Cheers,
Santhosh
Bangalore India
Hi, back in 2012 I went for an angiogram and thereafter the doctors told me that my AVM is untreatable and unoperatable.
Stewii have you sought a second opinion? Many members here were told their AVM was inoperable/untreatable and they are now AVM free. 2nd, 3rd, how ever many opinions you seek can't hurt, right?
Hi Stewii!
I know it is scary and not fun to talk about, but I am glad that you feel ready to talk about it. I read that you were told that your AVM is inoperable. Where in the brain is your AVM located? What is the reason you were told it is inoperable?
I was told inoperable also, but after seeking different opinions, I found a Neurosurgeon that offered with confidence to perform the brainstem surgery. I had surgery one year ago adn I am doing very well! Do not give up hope. DO not hear what your doctor says and think it is the words of God. Educate yourself on your condition, and do not be afraid to look for other doctors :)
Welcome Stewii and dont feel afraid buddy cause your not alone...this place while inspire you to overcome so many hurdles during the AVM journey...keep us posted on your progress man...God bless
I have to agree with you Trish...seeking other opinions should be highly considered.
Remember, what do they call the person who graduated last in their medical class? Doctor. :). To dandelionwishes point, educate yourself as much as possible so you have confidence asking questions. I wish you the best!
Im too scared to get a second opinion as I did it before and the only thing I got was dissapointment and false hope…
There's no time limit on second opinions, Stewii; maybe someday you will be ready to try again. Talking to others is an important step. It will help you adjust. So, keep talking. Blog about anything you like here on the site and ask whatever questions you may have. Soon, you will find yourself feeling better.
Im starting to feel better knowing that I’m not alone and that I am part of a support group that helps me overcome my sadness and feelings. I’m only 19 now and having a Brain AVM is the worst thing for me. It limits my abillities to live life at it’s fullest.
Stewii, I have noticed in the past that men in your age group often have the most difficult time coming to terms with a brain avm. You are just figuring out who you are and trying to find your place in the world. We have a teens group and a group for people in their early 20s. Just click on "Groups" at the top of the page to find them. Knowing their are others like you fighting the battle really helps.
You've come to the right place to talk things out. Also, I agree with more opinions, especially over time. What is called inoperable today may be operable later! I was your age when I had my first bleed. That was almost 40 years ago. Meanwhile, I finished college, got married, had a baby, continue to work (albeit at a slower pace!).... I've had a pretty full life and continue to do so to the best of my ability. I will pray for you.
Welcome I have my AVM since I was 7 and I’m a teen now and those fears never do go away because my brain is still growing and know that can’t do anything else to make the AVM go away those fears will never go away but all I can say is that worrying and what good does that do
Hi im glad to know that im not the only young person! I know that the fears will never go away… but now i know that im not alone <3
Hi Stewii I was told my AVM was inoperable as well. Mine is located deep in the left temporal lobe. Started out at 5 cm 7 yrs ago when I was 23 (a month away from my 24th bday). I’m still being treated yep 7 yrs later my drs are still working hard to get this bugger gone!!! All I hear is how big and nasty my AVM is. I have had 3 rounds of gamma knife. 4 rounds of embolizations over the last 7 yrs. Don’t give up hope. Like someone already said what they couldn’t do yesterday they can do in a week, yr etc 
After all this time I still have days of “why me” or “my life sucks” things would be easier if I never found this AVM and so on. But hey I’m here I’m happy and I stop thinking of the bad things but we all have the bad days. Best of luck hope you get the courage for more opinions!!
Hey Stew, I understand your situation. I, too, was a teenager with a (known)avm many years ago. Remember, although a lot of members here may be older, we ALL had our avms at your age, but not all knew about them. I've known since 13 and played varsity sports, went to college, and have a career. I accepted early on that this was just the hand i'd been dealt, and I had too much LIFE to live to worry about my avm. Later in life, at 35, my symptoms required treatment, but not obliteration. An avm is not a death sentence. Every year technology improves, because I know they could not for me in 1987 what my surgeons did in 2009! Stay aware of your situation and keep up to date with new treatments, but DON'T let your avm control you. Hopefully, technology will continue to advance and 'inoperable' will no longer be an option. However, I have said here before that I believe in quality of life, not quantity. I wish you the best. check out my blog about my island of denial, you may relate. Keep us updated with your progress, you are not alone. GK
Hi Santhosh, Do you have any idea about the best available doctors and hospital in bangalore for the treatment for AVM? This is for a relative of mine who is diagnosed with AVM Thanks. Shibu.
Hi Shibu,
My doctor(Dr.A.S.Hegde) who operated my AVM was long back in year 2001 about 13 yrs ago.
You can contact Dr.A.S.Hegde in the following address. Please note Dr.A.S.Hegde is now a very old man & is the head of the department & just only gives professional advice. He no more does surgeries. But he will redirect you & advice you the best option.
M S Ramaiah Memorial Hospital
New B E L Road, M S Ramaiah Nagar,
MSRIT Post, Bangalore - 560 054
Email :
■■■■■■■■■■■■■■■■■
Phone :
2360 8888 / 2360 9999
Other than this option I dont know anyone specific. But u can always go to the NeuroSurgery Wing of Apollo Hospital or Manipal hospital & try to find doctors based on their reputation.
cheers,
Santhosh
Bangalore, India
Thanks a lot Santhosh for the information. I will pass the information to my relative and ask them to get in touch with the doctor. I was also searching for a contact in NIMHANS bangalore, by any chance if you come to know any information, please share with me.
Regards
Shibu.