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Old 02-01-2012, 07:20 AM   #1
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marcylynn78 HB User
Smile Brain AVM not treatable Anyone else living like me?

Hi All-I am new hear & just hoping maybe this site will have someone like me. I have not found anyone who has an AVM that they are not treating. I sometimes think that it's better to just wait to see if I have a bleed or not, as I get conflicting information on what percentage I have, I've heard most ruptures happen between age 15-20, yet other sources say most happen between 35-45, which is about the age group I'm entering! I almost think it's like anything, as in heart attack, car accident-things like this could happen any day as well. I read too that there is a 70-80% chance that I will survive after a bleed, so that makes me feel better on waiting to see. The only issue I have is the waiting part & anxiety I get with any visual change/headache/numbness etc. If you are going through what I am please reply -

any comment is appreciated though even if you've had an AVM with treatment!

Last edited by Administrator; 02-14-2012 at 10:35 PM.

 
Old 02-14-2012, 08:04 AM   #2
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Carebear78 HB User
Exclamation Re: Brain AVM not treatable Anyone else living like me?

You should check out Johns Hopkins under AVM and/or brain surgery.
They have the best surgeons there. My burst back in 2000 while I was pregnant with my second child, my doctors removed mine! Do some research on different doctors.

I was one of the lucky ones as normally when they burst most people do not make it! I wish u luck! If u need anything please feel free to get ahold of me, I will asnwer what I can and direct you to information on things I can't

Last edited by Administrator; 02-14-2012 at 10:34 PM.

 
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Old 02-14-2012, 09:32 AM   #3
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marcylynn78 HB User
Re: Brain AVM not treatable Anyone else living like me?

Thanks for your reply-I will check into Johns Hopkins and maybe set up a consultation. I've done six years of research on this & have read that I have a 90% chance that I will live if my AVM bleeds so I am not too concerned about dying from this-I am glad to hear you made it through your bleed!

I am trying to find people who know about their AVM that have not bled & who do not want to go through treatment and just be monitored. I am glad you are doing well now-do you mind me asking where your AVM was located & how old you were when it bled? Mine is large, grade 5 & in the left occiptical/temperal lobe. Thanks for your reply!!

Last edited by Administrator; 02-14-2012 at 10:32 PM.

 
Old 02-15-2012, 01:55 AM   #4
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Smile Re: Brain AVM not treatable Anyone else living like me?

Quote:
Originally Posted by marcylynn78 View Post
Thanks for your reply-I will check into Johns Hopkins and maybe set up a consultation. I've done six years of research on this & have read that I have a 90% chance that I will live if my AVM bleeds so I am not too concerned about dying from this-I am glad to hear you made it through your bleed!

I am trying to find people who know about their AVM that have not bled & who do not want to go through treatment and just be monitored. I am glad you are doing well now-do you mind me asking where your AVM was located & how old you were when it bled? Mine is large, grade 5 & in the left occiptical/temperal lobe. Thanks for your reply!!
Mine was in the left frontal lobe, I didn't have a choice mine bleed form the pregnancy. I'm glad that you have looked up information, everything that I have read about them and was told about them is bad! But I know it is different for different people! My doctor's told me if they did nothing then I would have died and so would my daughter. I would recommend get a second and third oppion from different doctor's. Just a thought. I wish you the best, and I'm sure you will make the right choice. Keep me informed!

 
Old 09-10-2012, 12:18 PM   #5
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216005 HB User
Re: Brain AVM not treatable Anyone else living like me?

Quote:
Originally Posted by marcylynn78 View Post
Hi All-I am new hear & just hoping maybe this site will have someone like me. I have not found anyone who has an AVM that they are not treating. I sometimes think that it's better to just wait to see if I have a bleed or not, as I get conflicting information on what percentage I have, I've heard most ruptures happen between age 15-20, yet other sources say most happen between 35-45, which is about the age group I'm entering! I almost think it's like anything, as in heart attack, car accident-things like this could happen any day as well. I read too that there is a 70-80% chance that I will survive after a bleed, so that makes me feel better on waiting to see. The only issue I have is the waiting part & anxiety I get with any visual change/headache/numbness etc. If you are going through what I am please reply -

any comment is appreciated though even if you've had an AVM with treatment!
Most AVM's are not caught in time or they find them when you die. Mine was found just by chance when I had a MRI done. My doctor told me I was very lucky that they found it in time. I'm seeing a neurosurgen this Wednesday to go over my options. Have you seen a neurosurgen yet. You do not want to wait! You need to find out what type it is and what your options are. You do not want to wait and see if you do bleed or hemorrhage your chances of dying or having brain damage is very high. This is a rare diease only 250,000 people have it. Don't risk your life and bet on the odds. I'm scared to death (really) and the older you get the risk for a bleed is a higher percent. At your age group you have a 70.6% risk of a rupture. I'm 55 and mine is 86.8% chance for a ruputure. Look at this site and see if it helps: www.cumc.columia.edu/dept/cerebrol/AVM.html I will let you know my options after my appointment if you like me to. Good luck

 
Old 09-10-2012, 05:13 PM   #6
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Re: Brain AVM not treatable Anyone else living like me?

Sorry to hear you are dealing with finding out about your AVM-but from what I've read actually your chance of a bleed is very low. The chances of a bleed most occur between age 35-45 which I am just getting into that age group. And I've been reading up so much on this that actually there is only a 10% chance that you will die from a hemorrhage. I know it's scarey to know you have it, but your chances of a bleed are just the same as getting into a car accident tomorrow, heart attack, getting cancer etc. Some people live with an AVM their whole life without even knowing they have one-an AVM is not a disease-it is a tangled mass of blood vessels that are weaker & I believe if I take care of myself that my risk is low for a bleed. I rarely have headaches & don't have any complications at the moment from it. If it bleeds then I will deal with it at that time. I am also being monitored at the moment by a wonderful neurosurgeon. I just had my check up & they said everything appeared to be the same with my AVM. Until I start having issues with it, I've decided to leave it alone. SO many people jump into surgery out of fear, even though it may cause more damage than to just leave it alone. Please get a second opinion & do your research. Not much is known of AVM's yet-I no longer fear living with my AVM. I take precautions and keep my stress level down & do other things my neurosurgeon recommended-even though there is no guarantee-but life has none. I just try to stay positive. Right now I am living & enjoying life. I wish you the best of luck in whatever your decision is-please feel free to contact me if you'd like to talk.

 
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Old 09-10-2012, 05:44 PM   #7
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Re: Brain AVM not treatable Anyone else living like me?

I'm really glad your doing good! And that your neurosurgen is monitoring your AVM. That's what I'm also hoping for, that they'll do the same and just monitor it. It's like you said, there's so much information and it's really confusing and makes you scared of the unkown. I go to the nerosurgen on Wednesday and take it from there. I just found out I had it when my husband found me on the floor and not responding to him. Next day I didn't remember any of it and had a horrible headach, blurry vision, dizzy and neck pain. Did the MRI and they found it. So that was 8/23, so I have been on pin and needles waiting for this appointment. I read about the surgery and that is the last thing I would have done, unless there was no other choice. It's werid to think your born with it and would probably never know you had it or any problems with it. Is ignorance bless, if nothing is going to happen, then yes! Speak of the devil, I just got my reminder call for my app. You know you read all about a AVM, but to talk to a person that has it makes you feel your not alone. Thanks, this does help...just to talk to someone that knows what someone is going through. If you want, I can let you know what I find out when I see the doctor. My family has been supportive and I just want this over with so they don't have to worry and we can get on with our lives. Wish me luck

 
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Old 09-11-2012, 09:30 AM   #8
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marcylynn78 HB User
Re: Brain AVM not treatable Anyone else living like me?

Yes please keep me posted! I know some days I wished I would have never found out about this, but at the same time I feel lucky that I can be monitored & know what to look for in case I do start having a problem. Stay positive & I'll keep you in my thoughts & prayers that they give you some good news!!!!

Last edited by moderator2; 09-11-2012 at 10:28 AM. Reason: please do not post your email address

 
Old 10-30-2012, 12:58 PM   #9
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baskiv HB User
Re: Brain AVM not treatable Anyone else living like me?

Hi Marcy,

I stand exactly where you do.

I have a Avm in the right parieo-occipital part of my brain.

I have decided against surgery of any kind and have decided to wait it out just like you have. I have been searching for anyone who has taken the same decision i have since June, when they discovered my Avm. I can't tell you how great it is to know there is at least one other person who has the same conviction i have.

Wish you an awesome life and .....lets stay in touch.

B

 
Old 10-30-2012, 05:04 PM   #10
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216005 HB User
Re: Brain AVM not treatable Anyone else living like me?

Hi, I'm so sorry about the AVM it is really scary. It's been awhile since I posted this and since I have had a MRI done again and it ended up being a DVA so I am really lucky in that sense. But I have read so much, unless it's life threating I would also wait. Good luck and keep a positive attitude, family and friends are a great support.

 
Old 11-03-2012, 10:49 PM   #11
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AL944 HB User
Re: Brain AVM not treatable Anyone else living like me?

Quote:
Originally Posted by marcylynn78 View Post
Hi All-I am new hear & just hoping maybe this site will have someone like me. I have not found anyone who has an AVM that they are not treating. I sometimes think that it's better to just wait to see if I have a bleed or not, as I get conflicting information on what percentage I have, I've heard most ruptures happen between age 15-20, yet other sources say most happen between 35-45, which is about the age group I'm entering! I almost think it's like anything, as in heart attack, car accident-things like this could happen any day as well. I read too that there is a 70-80% chance that I will survive after a bleed, so that makes me feel better on waiting to see. The only issue I have is the waiting part & anxiety I get with any visual change/headache/numbness etc. If you are going through what I am please reply -

any comment is appreciated though even if you've had an AVM with treatment!
Hello,

I am going through exactly what you are, and not being treated. I can't have surg and may need radiation. Still researching everything. If I have surg doctors say I will be left paralyzed on the left side of my body. Lately I have been having what I think is mini stroke...though the research continues. I get sharp feeling needle *****s, electric shocks and numbness all at once. It starts at my toes, goes to the inner part of my legs to my pelvis, then chest to shoulders and neck, down to my arms and fingers, after that it goes back up to my arm to my shoulder neck and head. my scalp and the feeling feels inside my head too, I taste a metallic taste as well. your post was relieving to see, I dont know anyone with AVM and not treating. How are you now? Anything new? I am hoping we can share some information together and possibly communicate and find answers. I have something on the left side of my brain which I was born with and has grown, thought it controls the left side of my whole body. I also am just going with the flow and feel the same way you do....but the attacks are getting worse and they come out of nowhere. Hope all is well.

Best Regards, Al

 
Old 01-21-2013, 09:47 AM   #12
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billinda HB User
Re: Brain AVM not treatable Anyone else living like me?

My Dad has an AVM that is 5 - 7 cm in the left temporal lobe of his brain. It was found over 10 years ago, when he was young enough for treatment. Being asymptomatic, and in generally overall good health, we opted to continue to leave this possibly life changing, or ending, mass in his brain in the hands of God, as it had been for 70+ years before being accidentally discovered. Dad is now 85 years old, and continues no symptoms and good health, and we are extremely blessed.
I say all this to say to you, being a researcher, if I had a relative as young as you, I'd definitely enourage them to investigate the many options and proven research theories that are now out of clinical study. Even the study of taking tetrcycline and doxycyclene regiment (yes, antiobiotics) are worth investigating, and could bring peace of mind in that you know you are doing something that has proven clinical aspects of making a difference. Good luck to you, and my thoughts and prayers are with you as you make this overwhelming choice.

 
Old 04-15-2013, 10:58 PM   #13
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mojisaransh HB User
Re: Brain AVM not treatable Anyone else living like me?

Quote:
Originally Posted by marcylynn78 View Post
Hi All-I am new hear & just hoping maybe this site will have someone like me. I have not found anyone who has an AVM that they are not treating. I sometimes think that it's better to just wait to see if I have a bleed or not, as I get conflicting information on what percentage I have, I've heard most ruptures happen between age 15-20, yet other sources say most happen between 35-45, which is about the age group I'm entering! I almost think it's like anything, as in heart attack, car accident-things like this could happen any day as well. I read too that there is a 70-80% chance that I will survive after a bleed, so that makes me feel better on waiting to see. The only issue I have is the waiting part & anxiety I get with any visual change/headache/numbness etc. If you are going through what I am please reply -

any comment is appreciated though even if you've had an AVM with treatment!
Hi marcylynn: my father is also having AVM 4-5 cm . Iths been 25 years that he was diagnoised with it. We are very afraid of the side effects so havnt gone for any surgery. He is 59 now and having seizures every 4 months. If we go for surgery there are many risk of bein paralysed or memory loss.

 
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