Hi, Your post reminds me so much about myself. I was 57 when my AVM was diagnosed and I've had high blood pressure most of my life. I immediately found the best AVM specilists I could find in my area, which was at Mass General. My AVM was way back in my brain, so they couldn't operate and take it out. The radialogist at MGH told me I was 89% close to having a brain bleed and the only thing they could do was Proton Beam Radiation. I was told that it would take 2-3 years before the radiation would remove my AVM. They were right, I was AVM Free in 2 years.
My advise is to find the best and believe in whoever you find.
Hi Dana my name is Brenda ha not pongladi alias:>) Mine i think may have some sytoms but i did not know where these problems were coming from. Hard to swallow and breath sometimes, i get big knots or lumps on my forehead with blurred vision . all comes and goes. Oh wow u said it, headaches from hell. I had 2 in the last 15 yrs that were the worst and sent me to the er for help. Lots of less painful ones but they still sent me to a dark , quiet room for 3 days.Radiosurgy sounds like that may be an option for me because mine is deep in the withe tissue . I am learning so much from the feed back on this web site. so very helpful. I will go to your page and read your story. thank you for contacting me and hope u have a wonderful easter sunday too ! :>) Brenda
Hi Ron yea I am sure its not necessary for me to write " i am scared to death" ha its a given I am sure. But your reply made me chuckle and thats always good for the soul ! so thank you for putting it that way :>) You made some good points and I am going to start typing out my questions also some weird symtoms that I have that could or could not even be related. Knots on forehead that come and go with headaches, hard to swallow and sometimes short ness of breath. quirky things that never made sense to me cause they come and go.
It does sound like every situation is so completely differnet. Yes I have never heard of one until a few days ago when my doctor called me and told me the test reslults. I was actually happy cause I thought that it was good news that nothing was seriouly wrong with me ! talk about a Oh No moment when I looked it up ! ha I about fell out of my chair.
thank you and bless you and your family and I will take your advice ! Happy Easter :>) Brenda
Hi Louisa :>) Happy Easter too :>) wow we do have a lot in common ! Same age, hard to get to AVM. I have found a dr in Nashville tenn and I live in Ky he is a hour half away. His profile does not mention he has experience with avms but his nurse said yea he can take care of it come on in.
How do we find out how much experience they really have with avm treatment? do we just call offices and ask or does our pcp find them? I am so happy for you !!! sweet news, it made tears of happiness come in my eyes for you ! how exciting I hope I am that lucky too .
I told my sis today . I am so active and happy and healthy that I had a heart cath done 2 yrs ago and the heart doc told me I had the heart of a 16 yr old athletic ! then the but came.... I have a tear in the valve in between the heart chamber located dead in the center of the heart ! ok good news bad news. She said she needs to ck it every year and if it tears any further it would be serious surgery because it is so hard to get to. So now I have two things that are hard to get to ! geez what are the odds of that ? I should go and buy a lottery ticket !! ha
thanks you for reply and it filled me with a real positive hope ! thank you :>) Brenda
Brenda...I went online and typed in AVM neurosurgen and that's how I found my savior. There is a Doctor's site on the Network that has a list of good AVM doctors on it too.
My daughter has a Bicuspid Aortic Valve. She is pregrant with twin boys and I'm always worried about it.
wow I can see your concern about her pregnancy. I had my second son natural birth. My blood pressure was so high in the 9 th month they admitted me into the hospital and tried to get me to sign for them to go ahead and do a c section and take hime because my pressure was high in the stroke zone. Being youner and dumb i said no. They put me flat on my back till I went into labor. He was a realative easy birth but I had a huge build of fluids in my body from the pressure and toxima issues. It was a while before I was realeased. Now that i know i had this avm I know i was really really lucky . wow I am going to get on a good search for my doctor. I am not happy with the one i am scheduled to see. AVMs are not mentioned in his list of what he takes care of on line, his nurse just said yea he does'em. wow that was a scary answer for me.
I will keep your daughter in my thoughts and send you good positive energy for her !
I have reread this 3 times today ! in a good way ! I ran and told my husband what you said and even he was smiling as big as me. A light in a scary room right now :>)
I wasted three months with huge worries because I was referred to a place that had limited experience and no team meetings to discuss. Yes they saw forty a year but referred many of those out. If you go to a neurosurgeon he will tell you if he can or can not do surgery. If he can’t he will refer you to a radiation oncologist. If he can’t do it then he will refer you for embolization. Do you understand my point? Find a place that works as a unit with multiple disciplines that will evaluate your avm. Each one of ours are different from size to feeding or draining veins. Yes surgery may be possible but is that the best?
Even if you have to travel you will still save yourself time and aggregation.
It took time for me to take control and get in charge myself. In fact when I talked to one of the neurosurgeons he told me we are better off doing research ourselves to find a doctor than letting other doctors refer us.
Look on the first page for doctors we love or do a member search for those in your area.
I do think it's a good idea to write down every symptom you have. No matter how minor you think it may be. Write them all down. If you can - note what you were doing prior to there occurrence. Did you over exert yourself? Were you bending over for any reason? Things like that. It will help the dr. determine how the AVM is effecting you. He can tell by the location of the AVM if that's what's causing it or not.
Your difficulty to breath (properly) and swallow at times. Sounds like a muscle spasm to me. I can say this because, I get them too. Thankfully not very often but, it does happen. Mostly in the summer, when it's hot outside. It causes my blood vessels to expand and such. The normal effects of what being hot does to our bodies. My AVM is in a location that effects the muscles in my body. Needless to say - I avoid the heat as much as possible.
To answer your question I do think there are certain times when an AVM is best left untreated, however this is not a decision to be made in haste. I myself have elected to leave my AVM untreated after a year of diagnosis upon the recomendation of two highly rated neurosurgeons and their collegues. My AVM isn't huge (about 2.5CM in circumference) however it is spread out and diffuse. I was given the option of radiation that would give me a 75% success rate with a 5-10% chance of permanent deficit. They could also do surgery to remove it however because I currently have no symptoms ralted to my AVM (it was an incidental finding) the docs don't want to go digging around in my head and possibly cause me more damage than is really warranted since my AVM is also a low bleed risk. Thank being said, if I did start to have symptoms my doc told me that we would start to talk treatment at that point. In your case, your AVM is symptomatic and thus if treatment is possible, it is something you may want to consider. I would like to echo what others have said though, DO NOT go to the first neuroseurgeon you see in the phone book. Do your research, send your file to the top neurosurgery hospitals and if needed, travel to speak with the doctors that you have sent your information to. If you don't feel comfortable with the first doctors you speak with, get a second, third or fourth opinion. In addition, because of your heart issue, make sure that which ever neurosurgeon you consult with is willing to work with your cardiologist as this can be a factor when deciding to perform surgery.
And if you have any questions don't hesitate to contact any of us and ask :)
Hi Lindsay :>) ok today has been a big one. Thanks to you guys on this web site i cancelled a appointment to a Neurosurgeon that does everything but AVMs. I took the advice from a member on this site and contacted Dr Zipfel in St Louis. His office ask right off for the copy of the mri report which my home town hospital had to them in minutes. They sat me a appointment for the 18 but then called back after reading the report and moved it up to this friday. Needless to say I was impressed with the way they handled the whole process They ask me some questions on the phone then waited to read the report. I feel I have chose someone qualified to take care of this situation that best that can be done. Mine is symptonmatic with the swelling on my forehead with headache and blurred vision and some other things going on. I was lost until I found this site. Thank each of you for replying to my discussion and giving me life saving advice, I took it and I feel I am on the best path that i can have considering the situation.
You guys have been my support, complete strangers yet already bonded by something a week ago I had never even heard of. thank each of you from the bottom of my heart for your help, I was lost.
I have a wonderful loving family to help support me through this so what ever happens is going to happen but I feel I might have a better chance now with this doctor being there for me.
I send each of you all my positive energy and I feel yours in return:>)
thank you Brenda
That’s great. They were at my top but I found out that one of the doctors (Dr. Moran the radiation interventionilist) did not take BCBS PPO even though the hospital and neurosurgeon did.
Yes I finally feel some direction and not lost like i was all week. I feel good about the doctor I am seeing and he was one that was liked on this site so really good ! I will let u guys know how st louis goes . Friday will be here too fast or too slow ? i want to know and i don't and i know that makes sense to all of you that have walked this path ahead of me. I think my husband is in shock , this was just all so fast. We just got the mri results on the 28th and Friday we are in st louis. He is a good man so he will be ok , it just has to soak in a little at a time.
Your sons pictures if its ok with you I want to show this dr. The knots or lumps on his eyebrow and forehead. They look to be in the same spots as mine. I should have taken pics and kept them . But they look a like so the doctor will get it I am sure.
I will keep u posted ! :>) thanks again !! u guys are fantastic on here !
Thank You ! Yes as I told dancersmom , I want Friday to hurry and get here and at the same time never to come. You guys on this site are the definition of support. I feel so very lucky to have found it. The tips an advice so wonderful ! I will let u all know what happens in st louis :>) thanks again !:>)
I was just so glad they took my insurance :>) I did not know anything about avms a week ago but I sure feel I have learned so much from all of you and this wonderful website. I am so very thankful it was here. I am glad he was on your list !! that even makes me feel better :>) again thank you guys so much for all your help ! Brenda
You have no idea how happy I am for you (smiles). When you get a dr. that takes a personal interest in you, that's the RIGHT dr. to go see. I am so glad things are coming together for you. :)
Yes Ben I can feel all your smiles ! thats the positive energy flowing my way :>) trust me I needed it today :>( started out early this morning quite rough, but after I spoke to my sons , my husband , my family I felt better because I just made sure they all know how much I love them and I felt I was going to be in good hands. Thats all I can ask for. thanks for the smiles ! :>) back at ya :>)