Second Opinion!

SORRY BUT I COULDN’T KEEP QUIET ANY LONGER ! I do not buy a car without checking consumer report or talking with others who own that make/model of car. I would not put a new roof on my house without checking with the Better Business Bureau or my neighbors or friend who have had it done. I don’t even buy a pair of pants without trying them on . … So why should I not check out the doctor that will be working on my brain ? I have not always been this way. I always assumed that I should trust my doctor. But, after what I have experienced ,after many years of seeing several TOP RATED doctors and never receiving the proper treatment .I have learned I must take the route of getting not only a second opinion, but maybe a third before I make a decision of the treatment plan for me. What constitutions a specialist ??? Is it someone that treats 10 a year (varying inseverity ) or someone that treats 2 or 3 a week and sees a range of severity as far as type,location and size ? I’d like to see 5 doctors that do 100 treatments a year not 100 that do 5 treatments a year … JUST BECAUSE HE"S A KNIGHT IN SHINING ARMOR DOESN’T MEAN HE KNOWS HOW TO SLAY THE DRAGON

I agree! With my husband, when we spoke to his doctor about a second opinion, he welcomed it and said “a good doctor will not have a problem with you getting a second opinion” the one’s that may have a problem with it may have reservations about them being a good doctor in the first place. I thought that was quite a statement for a doctor to make, and made good sense to me.

The only downside to a 2nd opinion is if it differs from the first–and you think each of the DRs is highly qualified in his field. Then whaddya do? 2 out of 3, 5 out of 7, ???

One of our first Neuros brought this up when we asked about a 2nd opinion, and he was right–they were different. 'Cept one Dr had treated a few hundred and the other a few thousand, so we chose the later.

Ron, KS

I know that our neurosurgeon, who encouraged us to get other opinions, and in fact sent out for them for us, told us that when it comes to AVMs, you can ask 5 different surgeons and you will likely get 5 different opinions. He said that AVMs and the treatment of them is not black and white. When he sent out for consults for us, he also said that he sent them to places where he knew they would have Lindsey’s best interest in mind and not their own agenda. He told us that there were some places he could send her records to, that he already knows what they will recommend. That is just something to keep in mind, when choosing the doctors, whose opinions you will seek.

i too agree with you…it is extreamly important to find the right doctor for the job…i seeked 11 opinions before deciding…

second opinion! second opinion!
The first surgen I had seen about my AVM said I was inopable. He was right. "Do not bend over and pick up a penciel just go home and lay on the coutch until the right surgen will work on you."
The second brain surgen I whent to said he could cut it out and I would be fine. “I can get you in the OR tomorrow.” He was wrong what a hack of a doctor.
I talked to a total of 14 brain surgens. You are not wasting your time or the doctors. Get your stuff out thier!
11 of the 14 said if I had it cut out I would not make it off the table and if I did I would be a veary bad mess.
10 of the 14 said to have it gamma knifed. So that is what I did. I’m still here because of my research and you will be also.

Hi Gordon :slight_smile:
I will certainly want a second opinion, but what to do if you live in a little midget country like I do and there is only two hospitals that know anything at all about avm and only one that actually do the final decision?
…and they have already decided they do not want to do more…

Could you send me the “list” of possible good surgeons in the US like we talked about yesterday?

Love my prince
Rapunzel xxx

multifaceted team is the key word from my view point.
Dr. Vollmer at the houston medical center worked on me.
DR Dennis G Vollmer

Hi Hanna,

There are good AVM teams on each coast in the US, and several other cities as well. With scans being digital now, it is easier to send your info to other places, so I would pursue having your information sent to a few of these places to see what options are available.

Two that I know of personally are Stanford University Medical Center in Palo Alto, California (San Francisco) or Mass. General Hospital in Boston, Mass. Stanford takes in patients from around the globe and are set up to deal with long distance patients, such as arranging reasonably priced lodging, etc.

Hope this helps,
Ron, KS

Hanne said:

Hi Gordon :slight_smile:
I will certainly want a second opinion, but what to do if you live in a little midget country like I do and there is only two hospitals that know anything at all about avm and only one that actually do the final decision?

…and they have already decided they do not want to do more…

Could you send me the “list” of possible good surgeons in the US like we talked about yesterday?

Love my prince

Rapunzel xxx

My Opinion ! A Good doctor wants more input,be it a book or another doctor.But a good car salesman will tell you he has the best deal in town so go ahead and look. There are no down side to two opinions ,if there is that much differents get a third to weigh the information one way or another. And 5 opinions would and should be different and just maybe one of them will be looking outside the box and see something the others ones missed. Doctors are just people with alot of SCHOOLING about a given subject.Its like owning a hammer just because you own one doesn’t mean you know how to use it or have used it a lot. And teams are a big thing ! a long with facilities do they have manpower and the means to do the job. And with todays internet you can send you tests and scans to 20 different doctors in one push of a key. I just feel like some people are in the same boat I was in wrong place, wrong time and wrong doctor. Hanne if it was me I’d get my records together and send them to everybody that has a email address ,people would think it was Spam when I was done, to Doctors, your government people letters to TV stations MY AVM would be on every paper in th country in the world . Somebody give me a Soap box lol AND this is just my opinion for what its worth And the nice thing about it is you don’t have to read it lol

On reading the possible surgeons in USA Does anyone know of any in the UK? seems they are pretty low on good surgeons over here on avm’s…OR if anyone could advise us on if it is worth starting a charity fund event or going to local papers for help? but then again some people with avm are not allowed to fly?and if able to raise the fee to go to USA how long would it take to go by boat from UK?

June! If a doctor told me not to fly I’d have to know why.

This is a great suggestion. I’m going to contact TAAF (the US AVM nonprofit) to see if they could put together a list of top AVM neurosurgeons (by number of operations or some other metric).

Until I hear back, it’s hard to go wrong with any neurosurgeon from one of these hospitals:

Ben That looks like a homerun to me . Just added that pages to favorites. Now if we just had a list of questions to ask the prospective doctor about him or her and their facilities .

Nicely put, I could not have said it any better!! Second and third opinions are a must, if given the opportunity/time to do so!!

A list would be out standing! Make a post just for doctors names, number and webpages?

Daniel, I think it’s a fantastic idea, as I would be more than happy to provide my two doctors information, one in LA and the other in Omaha, NE…if people in turn believe it will be helpful. You think a new discussion should be started, or just continue right on this one??

I totaly agree with the list ,run the ideal past Ben, he may have a better ideal on how to start it. ( he is the site moderators dude) lol

I totally agree on getting a second opinion in certain situations. I was very comfortable with my Neurosurgeon and his advice to do embo’s and radiation. He told me off the bat I was not a good candidate for surgery due to the size and location of my avm. I asked why and he said “well you wouldn’t be sitting here like you are today”…basically I would have been in rehab and could have suffered from severe neurological deficits. I liked that he was being cautious and thinking of me and not all gung ho surgery happy. If he had immediately suggested a craniotomy I think I would have seeked a second opinion…