I heard from my Doctors!

After waiting roughly 2 months, I finally heard from my Doctors about my gamma knife radiation procedure! It took a long time because apparently my AVM is so rare that my neurosurgeon had to get a lot of different opinions. No one in Ohio will touch my AVM surgery because it is an atypical AVM. As it stands right now, I am being referred to Stanford University Hospital in California. I live in Ohio, so it is going to be quite a trip out there for this procedure. I don't know dates yet, but will probably try to have it done on a college break because I am in college right now (senior in nursing school). I really want to finish college, but at the same time, I want to get this AVM taken care of so as to prevent a bleed. I am doing my best now to keep up with my classes. I am taking community nursing, environmental science and nursing theory. It gets really hard sometimes because I have been experiencing a lot of dizziness, nausea and tingling in my hands and feet. The fatigue is also pretty overwhelming as well. I am trying to battle this the best I can, but sometimes the motivating factor is hard. I broke down today and told my one professor about the problems that I was facing, and she told me that she (along with the other staff) would be willing to move all of my finals around to accomodate me flying to get this procedure done. One of my main goals is walking down the aisle for commencement in May. It has become a reality that if something does not go right with my GKR, that might not happen.....but I am going to fight it for as long as I can!!

Stanford is among the best medical ctrs. treating AVM's, so you'll be in excellent hands!
Since you're having GKS, am assuming you'll have Dr. Chang?
3 of my 4 craniotomies have been w/ Dr. Steinberg @ Stanford - great dr. :)
Best wishes to you.

Thankd goodness you are going to a great hospital for those of us who have AVM's. Keep in touch with us! I wish you the best!

Thanks guys! I am going to be a patient of Dr. Steinbergs. I don't know a lot about Stanford at all, but I am hoping they will be able to help me.

Good luck. I'm glad your teachers are willing to work with you. I am surprised that Pittsburg Medical center (In PA) couldn't help you. They have a whole team of drs. just for avms. I had dr. Lunsford there. On the other hand - if you've never been to CA. you might as well have some fun while you are out there and do some sight seeing. The best way that you can that is.

My prayers ae with you


Stanford’s doctors are wonderfully talented. I have already gone from DM to Stanford so they could treat my daughter. It’s worth the trip!

Where is your AVM? If you are in Ohio maybe you should look up Dr. Hopkin's at the Vein treatment Center of Buffalo, I think they are at Buffalo General, they just moved out of Millard Fillmore Gates Circle. When they did my Gama Knife they got me set up at Millard Fillmore sent me by Ambulance to Roswell Park Cancer institute to do the Gama Knife, and then back to Millard Fillmore. I went to college while getting all of my treatments done, it wasn't always easy but I did graduate, and now I am taking the Adult Education program at Houghton College yay! Good luck, I hope that this helps and you get treated <3

Dr. Steinberg is a brilliant, exceptional dr. - I feel I can say most all of his patients think very highly of him. Here are discussions of possible interest @ http://www.avmsurvivors.org/forum/topic/search?q=Dr.+Gary+Steinberg.
Best wishes to you.

i know what its like to have AVM's as well as anyone on here ive had 6 brain surgeries and currently recovering from my 6th this one was in the stem of my brain and slowly closing everything in my body down thank god i went to Miami Valley in Dayton they did a great job espacially cause it was emergency surgery. i will pray for you and your family as i do pray for people on here. i know you will make it through and get back to your old self. take care and dont wrry about it or you'll stress yourself out and that could possibly make it pop or if it has already it could possibl make the blood flow out dont quote me on that it doesnt happen to everyone i only remember it happening to me before my last surgery

Yes Erik, stress can make it worse, so please try and relax and find a doctor who can help you so you become the best person you can be

My AVM is in my right cerebellum region and middle pons area. I am praying that my AVM doesn't bleed until I can have surgery. My AVM is extremely atypical. All of my info was sent to Pittsburg I know. I have actually been to CA before, but I will try to make the best of it. I try not to stress too much (at least what is possible being a senior nursing student)!lol=) Thank you for the well wishes!

Not that ambitious of a person are you ;) I know how you feel though, I want to do something awesome with my life, and I don't want to sit around and accept that I can not do anything anymore, I will do it no matter what anyone says or does :) I do hope that you do get surgery stay healthy :D

To help destress yourself & of course if you're up for it while in the S.F. Bay Area, we found the CA Academy of Sciences a blast (especially the planetarium!) http://www.calacademy.org/ to visit during several trips to Stanford for my 'brain-stuff.'
Of course just walking along the beautiful ocean beach is a calming destressor. :)

I found out a few days ago that they are going to with hold surgery and just monitor! MRI next year!~ They felt that the risks would outweigh the benefits.

Patti that sounds so fun! Neurochallenges, I hope that monitoring will work, and that you are safe until the next test.
Good luck in your studies ;)