Anyone else with an inactive AVM that has decided not to have surgery?

I will be 33 this year & am wondering if anyone else knows they have an AVM and decided against surgery? Mine is rather large and close to my motor skills, which my neurologist told me if we decided on removing it, it could cause more issues than not touching it at all.

If you haven't had treatment, can you explain how you've been dealing with life knowing you have an AVM? I noticed I have anxiety almost every day worrying about it & also am living my life extreme to the fullest. Thanks for your input!

I don't know if mine was inactive as I blacked out (seizure), I did not have any bleeding and the Dr's could not say if the AVM caused the seizure or If the AVM would/could cause another. Mine was also in my motor skills, that is why I chose to go with the Gamma Knife. Success rate is 80+ with few if any permanent side affects. Come 8 more days it will be the 1yr anniversary to my finding the AVM, my 5 month check-up shows shrinkage of the AVM.

The issue is that the AVM could bleed or burst, results of that are not good, so check out Gamma knife @ UMPC pittsburgh, PA.

The other note is that many people have AVM's, a greater percentage of people the AVM never causes an issue and the person never knows they have it.

Only God know's when you will have any physical issue, so worrying about does nothing but takes life from you. You are young check out all the options from around the world.

I will pray that you will find peace with any decision you make

God Bless

Thank you John for sharing your story! I will read up about Gamma Knife treatment & also get a few more second opinions! God Bless & hope you enjoy your weekend! :slight_smile:

John L said:

I don't know if mine was inactive as I blacked out (seizure), I did not have any bleeding and the Dr's could not say if the AVM caused the seizure or If the AVM would/could cause another. Mine was also in my motor skills, that is why I chose to go with the Gamma Knife. Success rate is 80+ with few if any permanent side affects. Come 8 more days it will be the 1yr anniversary to my finding the AVM, my 5 month check-up shows shrinkage of the AVM.

The issue is that the AVM could bleed or burst, results of that are not good, so check out Gamma knife @ UMPC pittsburgh, PA.

The other note is that many people have AVM's, a greater percentage of people the AVM never causes an issue and the person never knows they have it.

Only God know's when you will have any physical issue, so worrying about does nothing but takes life from you. You are young check out all the options from around the world.

I will pray that you will find peace with any decision you make

God Bless

Hi Marcylynn. There is a sub-group on here called...

http://www.avmsurvivors.org/group/inoperableavms

You may wish to join that group just to get their input should you decide not to do nothing. There is no right or wrong answer to treatment. You need to discover the risk levels with the options that you have for your size of AVM.

I will be praying for you!

Just found another sub-group for you...

http://www.avmsurvivors.org/group/unraptured_avm

if you click on the group it actually says unruptured not raptured...lol.

Great thanks so much Barbara!!!

Hello Marcylynn,I have five AVM’s an I choose not to have surgery.My are very deep.I have one also in motor skills area.My balance is not what it was but at my age what is.My daughter had a Avm near the brain stem and bleeding she had no choice but to have surgery(1999)She did very well with alot of pushing from me,NO WHINING.She got her life back totally.I think I’ve done very well not having surgery.I’m blind in one eye,hate noice,bad balance,can’t remember everything,etc.I was 33 when my first one rupture.I was VERY mad.My life was taken away from me.CowGirl UP!!I found something to do with myself.Been busy ever since,when I’m not resting so I can go again.Not every day is a feel good day.But get up and out on those good days.I ride my horses now,I’m glad I have them to take me in the woods.I can’t stand or walk very long but I can sit on them and enjoy my day in the woods.COWGIRL UP!Good Luck young Lady.

I’m 35 and have three young children. My AVM is in my left frontal lobe. Calcification indicates that it has leaked but I have not had a serious bleed. I scheduled for gamma knife surgery at the end of the month. If I was 10 or 15 years older I would not treat. I will because my children are small

mine was also in my motor skills. It bled, I’m paralyzed on the left side. I had many ct scans, mri’s, mra’s despite being preg. I also had an angio and 2 embo’s but because it was connected so deep within the folds and flaps(drs words) of my brain they couldnt reach one of the feeding vessels. I chose craniotomy immediately without question or hesitation. My hemi paralysis is worse yes but not by much. The dr said its most likely because of how deep the avm went, not because of the surgery. Im glad i chose the operation altho I had to start all over again with my therapies. I no longer have to worry about another stroke because the surgery was a 100 % success.Its a risk either way u choose but its only up to u. I personally couldnt live with that anxiety, i’m highstrung as it is.

Thank you all for your feedback-I really appreciate it! Yes my anxiety is bad & there are risks if I decide to not do anything or actually do something about it. As I continue on this site I’m finding myself with more options & am glad to read good feedback of successful AVM removals!

Hi Marcylynn I’m 29 and found out about my AVM when I was 17, no bleeding, just had a really bad headache. Mine is also very large and scattered around “normal” brain tissue in my left frontal parietal region in a motor skill area that controls my right side and possibly speech. I had embolizations and radiosurgery done but it did not work, they say it is still pretty much the same size and now more difficult to treat making it untreatable/inoperable. I to have anxiety about living with this, not knowing when/if/how something might happen, when I’m not feeling anything from it, I do pretty good but when it “acts” up i.e headaches, high pressure feeling then I worry, they say (doctors) because it is large it’s not as likely to bleed as smaller ones, but it’s not much comfort. So if you ever need to talk to someone I will be more than glad to help/share or just listen. Keep positive thoughts and good luck!

Doctors found my AVM incidentally and I to decided against treatment. My AVM is in the occipital lobe and was told that the best way forward was to erradicate it otherwise I risk a bleed or if the AVM gets bigger I could lose my sight. I have decided to go ahead with embolisations and gamma knife surgery. I hope you find the strength to make the decision which you feel is right for you and only you can make and be responsible for that decision.

Hi Marcylynn, by the sound of it your AVM is where mine was near the motor skils well mine was right in the middle of it and i had mine removes using a noninvasive tecnic called Stero tatic Radio Surgery, i had mine done in October 2006 and i have not regreted it at all from my last scan in 2009 they cold not see any signs of it. and i have been able to get on with life. all i can say is i wold of prefered to have it removed preir to it bursting in early 2006 and putting me in a very serios condition, to sum it up i wodl of prefertd to go throe the radio surgery rather then the 5 odd week in hospital after it bleed and be one of the luky one’s and walk out of the hospital and talk dont take what the docktors tell you as your only course of treatment ther is allwasy new thing happing that can make your life so much better. rember it’s your life and live it how you want but be informed what you options are… take care Gavin

I think about it daily. I am thirty five years old and this is all too much. lol .Mine is wraped all up in my main control also. They tell me that they wont touch it with a knife. It would probably kill me. Its rt where my heartrate, breathing,and basic controls are located. Its frightening. They say its pretty big. it starts behind my rt ear but covers way up to the back center of my brain. The embolizations are supposed to help around where my main controls are because they do not wanna get the proton too close. He said it could potentially cause all kinds of awful things to happen. They are not to comforting. lol …He warned me last week that this proton which may save my life today has a pretty good chance of causing cancerous tumors in twenty years. Im scared of all of it. Before this I would probably be out doing some kind of adrenaline junkie thing rt this minute. I lived so free. I have struggled from day to day just wondering what to do every waking moment since this happened. Sometimes I just wanna go home but there is no treatment at home. Its very tough out here on my own with no family in virginia. Then i think maybe ill just say to hell with the treatment. Ill live or ill die , but i always come to the conclusion that I must let them try to help me. I lived with this for years and never knew what it was untill very recently. The headaches the dizziness the passing out. Its happened since high school. I must say that its all progressed and got alot worse. It happend so fast also. Within the last year its became ridiculous.My big thing is that I know this is not going to just go away. I am very fortunate to have an opportunity to get some good medical help and i must stand tall, I must let them try to help me before its too late. I hope this helps. Its only my point of view for me. unfortunatly we all have to choose. I wish u all the best in the world.

Hey, I am 47 and did not really have an option as the chance of a bleed was really high and I have a 12 year old child, so for that reason I went ahead and had a crani 6 weeks ago. My AVM WAS(as in no more) in my motor skills as well, you can read the results on my page. All good, At least when you have a crani it is gone and that is that apart from any therapy, with gamma and all those it can take up to 3 years to work, and in the 3 years you can still bleed but I did not have that option.

Any way look around on the site and talk to people.
The options are there, try getting another opinion, I was told by my first surgeon that it was too deep and he would not operate but would refer me to another surgeon (luckily the best AVM Prof in Australia) who then also found 3 x aneurysms as well and found how urgent the operation was.
if you decide to wait and see that is totally up to you. Just giving you food for thought.
Whatever you decide just make it right for you

Kia Kaha Taiki (stay strong, take care)

DM

By the way what do you mean by “inactive” I have never heard that before.

Thanks Gavin for the information! I’ll look into that treatment that you had! I agree & would rather not have to wake up every morning wondering if this was the day I have a bleed! Take care & it’s wonderful to hear you’re doing well!



Gavin said:
Hi Marcylynn, by the sound of it your AVM is where mine was near the motor skils well mine was right in the middle of it and i had mine removes using a noninvasive tecnic called Stero tatic Radio Surgery, i had mine done in October 2006 and i have not regreted it at all from my last scan in 2009 they cold not see any signs of it. and i have been able to get on with life. all i can say is i wold of prefered to have it removed preir to it bursting in early 2006 and putting me in a very serios condition, to sum it up i wodl of prefertd to go throe the radio surgery rather then the 5 odd week in hospital after it bleed and be one of the luky one's and walk out of the hospital and talk dont take what the docktors tell you as your only course of treatment ther is allwasy new thing happing that can make your life so much better. rember it's your life and live it how you want but be informed what you options are.. take care Gavin

DM-I mean “inactive” by not bleeding or having any issues with it. I just struggle with the thought of the “what if”-like what if I never have a problem with my AVM & live life without it ever bleeding? Supposedly there is only a 3% chance that I will ever have a problem with it. I would just hate to go through surgery & then have problems the rest of my life with that when I could have been fine forever. It’s a very tough decision and there are days I just say to h@ll with it & I’ll just wait and see if there is a bleed I’ll deal with it then. I almost wish I wouldn’t have ever found out about my AVM and just lived life like I did before knowing about it.
April good luck with your appointment and keep us posted!
Jonathan thanks for your post too…it is frustrating & you’re in my thoughts!!!

Hi, marcylynn. I’m 42 & my unruptured AVM was just diagnosed in April. My neurosurgeon recommended against removing it at this time, due to size & location. He said I would have up to a 20% chance of having a deficit in vision or movement if he did surgery to remove it right now. I am an English/reading teacher. My hobbies are reading, sewing, and dancing, so I went with his recomendations.

I had one Gamma Knife Radiation treatment in June, and will have a 2nd in December. He thinks this will take care of the AVM. Unfortunately, he also found an aneurysm when he did the angiogram to look at the AVM & felt it was a greater risk of rupture than the AVM. I had surgery last week to clip the AVM. Thank God that he wanted to do it & the two of us were able to work surgery into our schedules before he went on vacation. When they opened me up, they found a second, smaller aneurysm that was very close to rupturing. He was able to repair both aneurysms & I am at home recuperating–and don’t seem to have had any neurological damage. I’ve had trouble with my vision the past week, but it is getting better each day. When I woke from surgery, my right eye (the stronger of the two) was completely swollen shut. A few days later, when I was able to partially open the eye, I attempted to wear my glasses, but the right stem rubbed against the incision. The next day, I located an old pair, and my husband removed the right stem. So…I’m using an old prescription to try to see. Other than that, so far so good!

Thanks for sharing! Glad everything went well for you! I need to hear more positive stories because at the moment I am somewhat in denial still I think that I have an AVM and have been pushing appointments.




A Collins said:

Hi, marcylynn. I’m 42 & my unruptured AVM was just diagnosed in April. My neurosurgeon recommended against removing it at this time, due to size & location. He said I would have up to a 20% chance of having a deficit in vision or movement if he did surgery to remove it right now. I am an English/reading teacher. My hobbies are reading, sewing, and dancing, so I went with his recomendations.


I had one Gamma Knife Radiation treatment in June, and will have a 2nd in December. He thinks this will take care of the AVM. Unfortunately, he also found an aneurysm when he did the angiogram to look at the AVM & felt it was a greater risk of rupture than the AVM. I had surgery last week to clip the AVM. Thank God that he wanted to do it & the two of us were able to work surgery into our schedules before he went on vacation. When they opened me up, they found a second, smaller aneurysm that was very close to rupturing. He was able to repair both aneurysms & I am at home recuperating–and don’t seem to have had any neurological damage. I’ve had trouble with my vision the past week, but it is getting better each day. When I woke from surgery, my right eye (the stronger of the two) was completely swollen shut. A few days later, when I was able to partially open the eye, I attempted to wear my glasses, but the right stem rubbed against the incision. The next day, I located an old pair, and my husband removed the right stem. So…I’m using an old prescription to try to see. Other than that, so far so good!

worrying is what you should not do…the more stress you have the more you are prone to a bleed or to the avm getting larger. I waited 4 years+ before I had surgery. I was fine and asymptomatic pre-op. The neurosurgeon was worried because the avm had doubled in size since the last MRI. So I had surgery.

If you do not opt for surgery there are many risks, for example hemorrhaging (which can possibly cause more damage). If the avm is large enough it can still cause problems with motor skills. Also, seizures can be a problem also.

My neurosurgeon said that if you go in healthy, you will come out healthy; which also depends on where the avm is located. I had some side effects as do all carni pt’s during the healing process; as with any medical procedure you do not come out the same. But overall, post-op I am fine. I am actually more active now than I was before. I guess I have a new lease on life.

It is possible to have an avm and not have surgery, just stay stress free, monitor yourself, and make sure to pay attention to the signs (headaches, dizziness, tiredness, etc…).

-best wishes