I am in a unique situation. I found out about my avm about February of 2009. While I was trying to figure that I out I came upon cyst growing on my ovary. Turns out the cyst was a tumor( a rare form of cancer) like the avm wasn’t enough! They removed my left ovary n Fallopian tube and Now recommmended chemotherapy. My chemo Doctor told m to take care of the avm first because that’s poses the biggest problem( most life threatening) again WOW! What do u do.? I’m on my way to goon thru brain surgery. A 4cm avm in the right cerrebellum. Too large for laser surgery n I’m not sure if embolization will help. Just had an angiogram done 2 wkd ago. N I’m now waiting on referrals from doctors. Insurance referrals suck they take forever. Yuck! Everyday I think is today the day. I’ve know now for about 10 months and it feels like it gets closer n scarier every day. I try to stay positive all the time but sometimes I just get sad. :-(. I laugh asuch as I can and try
my hardest to believe but I am scared n I do breakdown. I feel bad for my husband sometimes when I freak. Bit
most of the time I hold it together to make everyone comfortable. Is that weird? Wow that was alot. I guess if feel like I can talk n u all will know how I’m feeling
Welcome to the group.
You didn’t say how you found out about your AVM, but it didn’t just “show up” one day–you’ve had it at least some time, maybe all your life, so you have that as a positive: It’s been there and you haven’t died from it.
AVMs and other potentially life altering or ending events certainly trigger tons of emotional upheavals. For us, once we were able to put those at bay (at least a little), then we sat down and said OK, what are our options based on what our DRs have said, along with our own research. Doing nothing to fix it is one option. Evaluating the pros/cons of each potential treatment in as objective a fashion as you can led us to do the treatment we chose.
It is tough to come up with a good objective answer when most of the variables are subjective!
If you work through it, you should be able to come up with an option that you think is best for you. For us, once we picked a treatment, a lot of the anxiety went away, then you can focus on getting through that particular treatment.
Hope this helps.
Ron, KS
Hello Renee,
I have to give credit for being able to hold it together, way to go! Family, friends told me I said many weird stuff, very loud, obiousely could not control emotions.
After a couple of mos. I was able to behave normal, ( not a hundred percent), but even ‘normal prople’ don’t act good, youre doing ok, hang in there, things will work out.
I didn’t have any options, the AVM got me by total surprise, I survived, very thankful for the second chance, percieve life differt now, more greatful for people with the awareness of this group, welcome abroad!
Thanks for the support n offering of info. I found out I had am avm from a visual disturbance and the dr.s said it was a migraine but I didn’t believe them n had a MRI.
It is congenital so I’ve had it since birth n yes that is the positive part I’m still here:-) I do want to har kids n having an avm posig ally of problems with that.
I went n saw Neilartin of spetzler n Martin so I feel I’m in good hands n when he recommends surgery I feel like I should listen. Wriing a pros n cons list sounds like a good idea.
With the leaving it alone part. It’s scary. Not sure if that would be ok. But I found out in feb n again I’m still here.
Thx for the word of wisdom
Ron, KS said:
Welcome to the group.
You didn’t say how you found out about your AVM, but it didn’t just “show up” one day–you’ve had it at least some time, maybe all your life, so you have that as a positive: It’s been there and you haven’t died from it.AVMs and other potentially life altering or ending events certainly trigger tons of emotional upheavals. For us, once we were able to put those at bay (at least a little), then we sat down and said OK, what are our options based on what our DRs have said, along with our own research. Doing nothing to fix it is one option. Evaluating the pros/cons of each potential treatment in as objective a fashion as you can led us to do the treatment we chose.
It is tough to come up with a good objective answer when most of the variables are subjective!
If you work through it, you should be able to come up with an option that you think is best for you. For us, once we picked a treatment, a lot of the anxiety went away, then you can focus on getting through that particular treatment.
Hope this helps.
Ron, KS
I hold it together MOST of the time. It is a crazy thing to deal with. I’m sorry to hear your avm snuck up on you. That’s kind off what I’m scared of. When will that day come it may never come but I don’t know. How wonderful a lol crystal ball would be right now. Heehee. Thx for the support
Gerardo (David) Barriga said:
Hello Renee, I have to give credit for being able to hold it together, way to go! Family, friends told me I said many weird stuff, very loud, obiousely could not control emotions.
After a couple of mos. I was able to behave normal, ( not a hundred percent), but even ‘normal prople’ don’t act good, youre doing ok, hang in there, things will work out.
I didn’t have any options, the AVM got me by total surprise, I survived, very thankful for the second chance, percieve life differt now, more greatful for people with the awareness of this group, welcome abroad!
Gerardo (David) Barriga said:
Hello Renee,
I have to give credit for being able to hold it together, way to go! Family, friends told me I said many weird stuff, very loud, obiousely could not control emotions.
After a couple of mos. I was able to behave normal, ( not a hundred percent), but even ‘normal prople’ don’t act good, youre doing ok, hang in there, things will work out.
I didn’t have any options, the AVM got me by total surprise, I survived, very thankful for the second chance, percieve life differt now, more greatful for people with the awareness of this group, welcome abroad!
Renee, hi and welcome to the website. My avm was diagnosed earlier this year also. I started out thinking it was dental related, had a root canal, still had pain, dentist reffered to ear, nose and throat doc who told me he saw nothing. Thought I was losing my mind but I remember telling my gp that even though I did have some sinus infection, I actually felt like something was growing in my head that didn’t belong there. I also couldn’t talk very loud without feeling all the bones in my face vibrate, very painful and scary. I know one thing, we all know our own bodies and know when something is not right. I think the fact that yours is on the right may be an advantage for you. Mine is a 3.5 on the left lobe and right on top of my motor strip and the main artery. So to operate would more than likely kill me or at the least paralyze me completeley orcording to the neurosurgeon at Loma Linda so I opted for the next best thing, proton beam radiation therapy. I don’t like the idea of embolization becuase from what I gathered it has to be repeated. My insurance really dragged their feet also on the approval for the treatment. It took them five months to approve it because they were confused about how to code the CT and MRI that were included. I had watched Michael Moores movie “Sicko” and was conviced they were just waiting for me to keel over and die before they had to approve it, I actually called them up one day histerical and told them that. I’ve had some really crazy hyserical moments myself so don’t feel bad. Having an AVM is at time like having one foot in this world and one foot out. I was so scared of having surgery that when they told me that they didn’t think it was a possibility I was so relieved. So you have opted for surgery for sure? If you trust your neuro and they recommend it as the best bet, I would do it. I realize how scary the idea of it is though. I opted to do something about it when my neuro told me that time was not on my side since I’m fifty. I though just the opposite. I figured, I’ve had it since I was born so the odds are with me if I’m still here. I’m glad that I had the treatment because I want to be here with my family, expecially my grandkids, but the complications have been rough. I’m finishing a fourth round of steroids for brain inflamation, the neuro’s don’t undertand it, they say most people don’t keep getting it, I think it’s stress that is causing my immune systym to fight the whole healing process. Everytime I get it though I feel like my motor skills are slowing and getting worse. Oh well, one day at a time. I do the same as you, laugh when you can as much as you can, but I do breakdown too. At least once a week I just sit for about an hour and cry, but that’s what gets us through I think. I know one thing, I know now how precious life is, and we have to really enjoy every single second of it, especially moments with our loved once. So since you had the angio two or more weeks ago, they should be doing the surgery soon? I know someone that had a doctor do his surgery at UCLA years ago when he was only 16 or 17 years old. It’s a great place. In fact if I keep getting brain inflammation, I’m thinking of going there next. I live in Riverside CA so it’s not that far for me. I feel your pain, you are not alone. This website will save you, I don’t think that are husbands and most others can really understand, even though they try. If you haven’t decided on surgery yet, I would read everything that I could get my hands on, definitely pray, seek wisdom and make whatever decision you feel peace about. For me I could not do surgery, but with yours being on the opposite side, the situation is completely different. I will pray for your that whatever means you seek to make your decision, that it’s the right one for you, and remember that you are never alone. Everyone here understands. Take care…Judy
renee,
haing surgery…isnt an easy decision…but i know where you are comming from i had a massive 12.5cm avm that was deamed inoperableby many surgeons and i was told pregnancy would most certanly result in a massive bleed and death…i searched until i found a surgeon who would complete the surgery …so one day i could lie the dream of having my own family…my surgery resulted in left sided paralysis but i continue to get better everyday and i have been told that once physically ready there is no reason that i cant start my family…so i know in time it will happen…my personal iew is go with your heart …you know what feels right deep down …you know your greatest wishes and desires…but whateer you cjoose its important to have no regrets …and believe you have made the right choice…whatever you choose i wish you the best of luck …and i will be sending lots of positie healing energies your way