For those of you interested in seeking second opinions on your AVM, treatment plans, etc. this is an excellent opportunity. Barrow Institute is widely known for it's treatment of not only AVMs but other neurological disorders as well. Through this program you can have doctors from Barrow evealuate your case for $100. Check out this link if you're interested:
Trish, Thanks for posting this regarding the 2nd opinion available by the Barrow Institute. When my AVM was diagnosed 7 years ago, it would have been wonderful to be able to get their second opinion.
Yes, Ninibeth...Paying $100 for their second op is a fraction of what I paid to get my second opinion AND Barrow's is extremely knowledgeable about AVM's.
You know, on first glance, $100 seems expensive no matter what the situation. But from what I've seen over the years, the folks at the Barrow institute really know their AVMs. (No, I'm not taking any kickbacks from them to say that...lol). Bottom line, if you have the opportunity and need it, I highly recommend getting a second opinion from them. Thank you for posting the link Trish!
Thanks for posting this valuable link, Trish.
Second opinions are so important in the process of evaluating your options, because knowledge is power. Here are some other options to empower you:
You can get a second opinion from John Hopkins
You can get a second opinion from Mass General https://econsults.partners.org/v2/(S(gv5hww2h0zbbzarrh4kkhtfe))/Default.aspx
These hospitals are also highly regarded when it comes to AVM treatment, but there are too many to name. Remember, it’s not necessarily where you go, it’s that you get a second opinion from a doctor or hospital that has extensive experience with AVMs. So do your homework, and become empowered!
I’m in no way endorsing Barrow specifically but they are offering a relatively affordable option to get a most important 2nd opinion. Like you all said knowledge is power.
I just posted about this on FB last week. It is SO cool!
Good to know too. The more information available the better. Thanks
We go our first opinion at the Barrow (outside the hospital we ended up in, which didn’t treat AVMs). We got our second with Rosenwasser in Philly and 3rd and 4th with Lawton at UCSF and Chang at Stanford. Each AVM is different and each doctor has a different approach. We ultimately went with Chang at Stanford because they are routinely treating large, deep AVMs in adolescents. Had The Barrow said they could treat it, I would have gone there in a heartbeat. Dr Spetzler is in the camp that believes the larger ones don’t bleed as much, as I understand it. Dr Lawton says the science behind larger AVMs says otherwise. Our daughters AVM has bled already and she’s only 11. I wasn’t going to wait for the next one. So, for us, both Lawton and Chang were options. For others that might not be the case. Thanks for starting this string. I think those who are still searching for help/answers will find value in the information provided by those who have already been down this road.
Thanks for your reply, FamilyFirst....It must be very hard to make a decision when you have 4 opinions, but it seems that after all your hard work, things went well.
Your reply will be very helpful for the members going through this journey. Thank You!
Thanks Louisa. It really came down to two. The barrow didn’t want to do anything and Rosenwasser wanted to wait until adulthood to radiate. The combination of size, depth and her being an adolescent seemed to keep some doctors at arms length. Penn’s proton beam therapy center looked at her images and referred us to Mass General. It was a scavenger hunt, that’s for sure. So, I know what it’s like for people having trouble finding the right “home” for treatment.
Hi, is this just for brain avms or is it for foot avms pls? Thanks
Munchkin, the hospitals mentioned above are known for brain AVM’s in the USA, but the principle is the same. Getting a second opinion is a good thing, particularly if you’re not comfortable with the first one. I’d do a search in Australia for reputable hospitals that deal with extremity AVMs and get one. All the best!
If I lived on the West Coast, I would have chosen Stanford. While I live only 1 hour away from Mass General, I had proton beam radiation there.
Thank you for posting this site. I am going to get a second opinion from them. I had never really thought about it until I saw how many others with AVMs had gotten more than one opinion on their treatment plan. At least I can put my mind at ease if they tell me they would recommend the same treatment plan that I have already started. But if not, oh well there goes another can of worms. Lol...
You’re right. Most folks do get a second opinion and this one seems less cost prohibitive than seeking out an entirely different team of docs close to you. Best of luck!
Melissa, 2nd opinions are so important, no matter where you get it. You need to know all of the available options to be able to make an informed decision. The important thing is to feel confident in your team of doctors and their treatment plan.
Thanks Tim for your reply. Just not sure where to start looking, that s all!! Thanks Deb
Oh well. I sent everything I had to the 2nd opinion program and they basically said it was more for would I be a canidate for surgery or not. Since I have already had radiation treatment I was told they could not simply review everything and tell me I chose the right treatment plan. So I will still wonder if I am being treated in the most successful way. Wish I would have known about getting a second opinion before getting so far into treatment. I have sent a question to my doctor asking if my avm had been reduced by 50% prior to radiation therapy that that would probably put it at about 2.5 cm. Would the success of obliterating the AVM be more so because of that? I just don't want to have to worry about it any longer than I have too.