Hi all. Thanks for being here to listen to my rantings and offer hope/help/support.
I had my 2nd consult today with the doctor from OHSU. His take on the whole thing is totally different then the first OHSU doctor and the Kaiser doctor. I’m so frustrated and confused by this whole process! So here are the doctors view on what to do -
1st doctor I saw said radiation - small size
2nd doctor said surgery - small lemon size - 70 % chance it will bleed in lifetime - wants it out
3rd doctor says do nothing and wait to see if it bleeds - called it large - not good for radiation - says low risk of bleeding - will have definite issues w/left arm and/or leg but don’t know how severe if I have surgery-
I had an MRI specifically for this appointment and this doctor didn’t even talk about the results of that!
I feel like these guys are looking at 3 different people and not me. How can they have such different takes on the same chart? I mean they are all over the board with this - 3 doctors, 3 different views, 3 different treatments. Anyone else experience this? What did you do?
So the 3rd doctor is sending me back to the 2nd doctor so he can make the decision on what to do. I’m so confused, angry, and frustrated with this process and that no one seems to be on the same page. What questions should I ask this 2nd doctor this time around?
Hi!
This i what I will do ask, ask alot questions remember that we are the ones sick not them…They are gonna get mad. But ask, ask again. Sometimes doctors they only work with the condition and not the patient …And if you dont like their answer look for aanother one until you feel comfortable with
the answer or information also do some research, I know it could be so stressful, But have faith my friend…You will be on my prayers good luck>>>God bless.
It sounds like Doctor 3 is deferring to another doctor. By sending you back to Doc 2, isn’t Doc 3 saying that your situation isn’t within his own expertise? If so, you can throw away Doc 3’s final judgment, and just talk whatever he said over with Doc 2.
Have you compared the credentials of Docs 1 and 2? Have they both done all types of procedures? (If all Doc 2 knows is surgery, of course that’s what he’ll suggest, and the same for Doc 1 and radiation.)
Being part of a team with a lot of AVM experience is also important; docs on a team consult with each other, so you know that the options are being considered among surgeons who are experts at each procedure. Are Docs 1 and 2 members of neurosurgery teams? What kind of expertise is there in each team?
This sounds like a tough situation for you; I hate feeling like I have to make this kind of choice. Ultimately, it’s about which doctor you trust more (in my opinion), since we can never understand the full situation without putting ourselves through med school!
Doc 3 specializes in embolization, he stated that he would only be doing that part of it and that Doc 2 would be doing the surgery. I’m confused on that because Kaiser SENT me to OHSU because they “weren’t equipped to handle this”.
Doc 1 & 3 works at OHSU (taken from their website - the only health and research university in the state of Oregon, OHSU also provides leading and often world-renowned educational services through its five schools, and is the only place in Oregon that grants doctoral degrees in medicine, dentistry and nursing. And OHSU is the only academic health center in the nation with a school of science and engineering focused exclusively on human and environmental health. Our nationally recognized neurological programs and centers offer comprehensive clinical and surgical services that are available nowhere else in Oregon).
Doc 3s website - Dr. Barnwell is a neurointerventional neurosurgeon who specializes in the treatment of problems and abnormalities of blood vessels in the brain and spinal cord. Dr. Barnwell has joint academic appointments in the Departments of Neurological Surgery and Diagnostic Radiology. He joined the Dotter Institute as an associate professor in 1991. He is an active member of the medical community and is chair of the clinical faculty committee in the Department of Neurological Surgery and serves as executive director of OHSU’s arteriovenous malformations (AVM) support group.
Doc 1s website - Dr. Dogan is a neurosurgeon with expertise in cerebrovascular and skull base neurosurgery. He specializes in the treatment of problems and abnormalities of blood vessels in the brain and spinal cord, including: aneurysms, arteriovenous malformations (AVMs), arteriovenous fistulas (AVFs), cavernous malformations (CMs), carotid stenosis, and complex brain tumors.
Doc 1 & 3 disagree on treatment - Doc 1 says radiation is an option, Doc 3 says it’s too big and to leave it alone and wait for a bleed. They work on teams but not the same team, I think?
Doc 2 works at Kaiser. There isn’t a website other than a list of where he went to school. I know that he is in contact with Doc 3, but I don’t know if there are other Kaiser docs involved.
Doc 2 worked at the hospital when my mom had her AVM surgery almost 30 years ago. He doesn’t remember her but did remember who her doctor was (at that time he was the best in the country).
Doc 3 also worked at that hospital when my mom had her surgery. However, he seemed to remember her case / her name.
I can’t say I trust any one over the other. :0( How do you make that choice? by feelings? by what they say for treatment? by experience even if they all seem to have similar backgrounds? Doc 2 said take it out even though I would have a disability afterwards. Doc 3 said it’s not doing anything now, wait for it to bleed and then take it out. However, I may face worse disabilities or death with that option? How do you decide that?!!
Complicated…so, why did you go from Doc 1 to Doc 2?
Because it appears that if the radiation expert says “do radiation,” the surgery expert says “do surgery, but only if you get an embolization from doc 3 beforehand,” and the embo expert says “don’t embo,” then you’re back with doc 1, the radiologist. If that’s basically what happened, then maybe it comes down to considering radiation, and comparing the radiology expertise of docs 1 and 3.
Does doc 3 say radiation won’t work at all, or that it will do more damage than it’s worth? Because radiation might help to reduce the size of the AVM, even if it can’t obliterate it entirely. That could reduce the chance of a bleed, maybe, or maybe make you a better candidate for surgery. I wouldn’t know for sure, but it seems reasonable to ask either doc 1 or doc 3.
There’s a big element of unpredictability in all of this, whether you live with the AVM or treat it. Whatever you do will be the right decision; you have good info from expert sources, which means it won’t be an easy decision, but there is no wrong choice. That may sound silly, but it might be the best way to go forward.
Maria…What I would do is find out which of the 3 docs have treated alot of AVM’s. There are neuro docs that don’t know anything about AVM’s. The first doc I went to said do nothing NOT any AVM doctor and so I found a doctor that treats AVM’s every day and picked him.
I wish you the best of luck and keep us informed. Stay strong…I know it’s alot of work, but it’s your health and it deserves the best!
I am a Kaiser patient. When this whole ordeal started Kaiser said they weren’t equipped to handle this and sent me to OHSU. Doc 1 (radiation) was on the case when I came in, (I don’t know that he is an expert on radiation, nothing shows he is) but because they weren’t going to do surgery Kaiser said they wanted me back. I was then sent to Doc 2 (surgery) who said that it’s to much of a risk and to have surgery but to consult with OHSU doc. Doc 3 (do nothing) is the one that would do embolization surgery, but he feels that it’s not that bad and that since it hasn’t caused any issues or bled up to this point not to have surgery because I WOULD have a disability. He also said that radiation wouldn’t work because it’s to big…I think there is an issue with where it’s located becuase it’s not “on top” of brain tissue it’s wrapped/embedded around it.
I have an appt with Doc 2 on Halloween. Is there questions you can think of that I should be asking?
Whichever route you take, you have to feel 100% confident that it is the right decision for YOU. After all, you are one that gets to live with it, not the DR.
AVMs are complex beasts, and highly qualified DRs can and do disagree on how to treat it. As has been mentioned, I would give a little more credence to the DR that has treated the MOST AVM patients. Also, a team (embo, radiation, and surgery) that already works together will make your life so much easier than you trying to coordinate among specialists from different groups. To me, having a team discussing your case, and deciding what is the best suggestion for YOU seems important.
Try to bring the written opinions (office notes, which you can request from the docs’ offices or through medical records) of the other doctors, and CDs of all scans/tests you’ve had. They’re supposed to be able to communicate all this to each other, but in my experience, communication usually falters somewhere unless you’re actually transporting your medical record yourself. This way, you can make sure someone’s looking at all the info together, and you can ask him his opinion on the inconsistencies.
I would ask about the disabilities the surgery could potentially cause, and how the risk of those occurring compares to the risk of a bleed.
I hate to suggest a fourth doctor, but have you considered sending your medical record for review to the top authority that your insurance will allow you to access? That person could be out of state; an AVM doc at the Mayo Clinic (2 states away) happened to be in our insurance plan, and he agreed to look at our files if we mailed them to him. If you can identify someone who’s 1) not absolutely out of traveling distance–just in case they offer a treatment that makes you want to travel to them, 2) in your insurance plan, 3) a top AVM specialist, and 4) an expert in multiple treatments, you might want to give this a try. They might say “go with the recommendation of doctor X,” or they might have an entirely different recommendation…but if this is the person you picked on the basis of expertise, this is the one you would trust. I know it would be a burden to do this, but if you still feel like there’s no clarity after the Halloween appointment, it’s something to think about.
Hi Maria. I talked with 3 neurosurgeons too. The first one thought I was inop. Second one said best case scenario…leg brace with cane…worst permanent loss of cognitive thinking capabilities plus paralysis. The third one said I can operate and get you back to work in a year. I chose the third one.
Keep searching for the right doctor!