First here is a little back round of my story. My AVM was discovered in November 2006. It’s located in my left temporal lobe. In March of 2007 I started my journey of embolization and gamma knives. Fast forward to today and I have had 4 embolizations and 3 gamma knives in total.
Here is the problem I was told from the start my avm was deep and considered inoperable. That it could only be treated with the above stated treatments. I had to get a new avm dr 2 yrs ago for reasons out of my control and I haven’t liked him. Today was my yearly check in and in October it will be 3 yrs since my last gamma (and last embolizations). He stated today that my avm will not change anymore it will not shrink (which I thought was the point of gamma knife). His plan is to have me do an mri in 6 months and than in October of 2017 an angiogram to see if the am is getting blood flow. If it is he wants to go in and surgically remove it, if its not getting blood flow than I’m cured??? Even though the avm is still there.
HOW can this be has anyone heard of this? He also claims my avm is not deep its close to the surface. If that’s the case wouldn’t the first 2 drs I had of just cut it out and saved me yrs of hell. That was the reason I had the 3rd and 4th embos. I went to that dr for a 2nd opinion (per my avm dr) to see if there was something else we could do. That dr said no way could I be cut open my only options were more embos and gamma. I’m so confused, mad, hurt, angry. I need advice help anything. Has anyone gone through this?? Would you change drs? Would you contact your old dr for help?? Anything anyone has to say can surly be of help. This has been almost 10 yrs of my life. I’m losing sight in my right eye. Headaches are getting worse and seizures have increased…
Mine was very deep on my optic nerve at the rain stem so it was inoperable. Yours might have been inoperable due to its size or location too close to a critical part of your brain where a breed could have led to catastrophic consequences. They may have only been trying to shrink the vein feeding blood to a weak bubble of blood.
You should try to get another opinion and talk to your original doctor if possible. It is imperative to get as much info/advice as possible and demand anwers. I’ve learned the squeaky wheel gets the grease.
HI I’m from Buffalo NY. I agree 100% and I’m looking to get in touch with my original Dr now. That’s why I’m so confused 3 Dr’s have said it’s deep and if I where to have a bleed I’m screwed, and all of a sudden this guy is like it’s an the surface and it’s no problem. I don’t get it at all. Luckily I just happened to ask for a cd of my mri so now I have that to show any Dr and can hopefully get any information that they will need. Thanks for your reply!
Yes I’m definitely getting more opinions. First of which is hopefully going to be from my first Dr as I trusted him back than and now that I can trust his opinion again. Thanks for the reply!! Hopefully I can get some answers and stress lifted from this soon.
One of the best AVM neurosurgeons in the country is Dr. Solomon at Columbia University Institute…in NYC…(212) ■■■■■■■■.
My opinion is to call them and see if they will look at the CD of your MRI and see if they will give you another opinion…
There are several hospitals with AVM specialists were you can send your scan and they will give you another option…Johns Hopkins, Mass General and several others. There is a charge, but it would save you from traveling.
Im very sorry to hear this and it annoys me to read the inconsistency of these dr’s who we put our lives in their hands to…if you dont like the dr you have at the moment then i would definately consider changing drs ASAP to even get someone who i feel better with and as another opinion… I would also talk to ppl here from your location as they may be able to refer you to someone they used and had a good outcome… God bless!
I have officially gone back to my originally dr and he is also going back over my case with my 2nd dr that I had for 7 1/2 yrs. So I feel so much better and more confiedent in his hands!!! The only reason I stopped with the 1st dr was because I didn’t need him anymore. The 2 dr was all I needed for gamma knives and everything. Sadly he changed practices and had to commit to just spine no longer avm patience. That’s how I ended up with the dr that disagreed with how I was treated by the other drs. Plus him and I didn’t not connect and that is a big thing you need when you put your life in someones hands. Thanks for the comment, means a lot.