I want a doctor who sounds optimistic and will just tell me what to do

General
1

I am so tired of paying for appointments with no real purpose. I just met with the radiation interventionilist who would do my embolization procedures to shrink it so radiation would be safe. All I hear is how complex my avm is and the dangers of treating it and the risk of not treating it.

I can live with some deficits. I know the chances are slim that I will ever be my old self. But I want a plan. Not more talking. I am thinking it is time to move on to another place. He said mine was very complex but he also said they only do about 20 a year. Maybe mine wouldn’t be so complex to those at Mayo or Barnes Jewish Hospital in St Louis.

I just want direction and a decision to be made instead of hearing how bad, complex, and serious it is. Tired of living with tears all of the time.

Robin

2

Hi Robin,

All of us here can relate to the frustration you are facing.

The reality is, unlike when you have a broken arm, the solution is you splint it, an AVM is a complex beast. There are generally several ways you can treat it, in differing orders, as well as do nothing. A lot depends on the avm itself, the capability/skill of who you are seeing, and the guidance or determination from the patient.

Our experience was that the AVM doctors we saw laid out what they saw as the situation, what course of actions were possible along with the risks involved, and a recommendation of what they thought might work best. But it really was OUR CHOICE.

I'm sensing (Maybe incorrectly, and I certain don't mean to offend you in the slightest) that you might be reluctant to take the lead. The way we approached the AVM was that WE were the ones most impacted, and WE were going to be the key decision makers in the process. It worked well for us, and might not work for you at all, don't know.

And it is just as likely that your Drs aren't providing you the info you need to make a good decision. Or maybe it's something else entirely............

One thing in your note jumped out at me as a red flag: ".....they only do about 20 a year." I don't know about you, but I wouldn't have my car serviced by a place that fixes 20 cars a year. And I certainly would be hesitant to have someone muck with my brain who only fixes 20 a year.

Since your note also said "......just tell me what to do", here's my suggestion:

Have your neurologist (who we found to be the gate keeper to other specialists for avms) refer your case to an AVM team that has treated over 3,000 AVMs total and currently treats several hundred a year now. That team should have the capability WITHIN the team to do any combination of embolizations, radiation, and surgery. They should come up with a recommended plan for you.

The importance of covering all specialties is represented by us. Following one of several embolizations, the embo guys saw an aneurysm on one of the scans, so another member of the team two weeks later did conventional surgery for the aneurysm. She also had radiation following embos, and then surgery to remove the rest. (All this was over a 3+ year time frame.)

I know medical costs and travel are an issue for everyone, but for us, we wanted the best team, no matter the cost. I buy generic foods, but I don't buy generic medical help to fix my brain............(grin).

I do wish you well Robin. And if anything in my note offends you in the least, I apologize completely. I offer these words in the hope that it helps you in your journey.

Best Wishes,
Ron, KS

3

Hi Robin,
As mentioned by Ron, it is not a broken arm we are discussing but your brain. I know the frustration you are experiencing. I was dxed with my AVM in 1988 after a big time, break-dancing, losing everything except my bowel control, bladder control and lunch.
There was anxiety, irritation, a bit of anger and the feeling of just wanting it to be finished already but that's not the way life is, Cupcake. It's not TV with solving the murder in 60 minutes.
At the end of April or beginning of May 2012, my AVM had a bleed. I basically lost 9 days of my life. 3 days of incapacitation before hospitalization and another 6 days in hospital. Add another 30 days where I was housebound and another 30 day relaxing.
After all that, my neurosurgeon took the lead in coordinating my next phase of care. I went to a vascular/neurosurgeon, had the angiogram and was told embolization was not an option, healthy brain tissue was intertwined with the AVM. If there was a future bleed, it wouldn't be easy and there would be deficit.
After all that, there is an upside. There was a shunt installed and I'm presuming that's the reason my head is more clear, thinking-wise and not hearing my heartbeat in my head for the first time in my life.
I can't tell you what life holds for you. I can tell you this, everybody in our situation feels like they've been handed the dirty end of the stick, it's up to you to decide how long it will be before you let go.

4

Hi. I sent my work to BJH and Dr. Dacey for 2nd opinion. They felt the risk was too high for my surgery as it is over my motor cortex. He is an excellent neurosurgeon, lots of AVM experience, and their surgical suites/theaters are top of the line. They were my first choice medically and because of the need for my family to be there. Let me know if you need any info about BJH, Dr. Dacey, or lodging in the area. Don't stop looking, you will find the right match. Have a joy-filled day, it's a choice. ~Elizabeth

5

Don't worry Ron I wasn't insulted. I know I want to proceed with this. My frustration comes from weeks of asking questions and not getting clear answers. I have asked since I started with KU Med how many they see. I want an actual number. The answer I got was we are the main referral hospital for the area. Finally I got a number which is too low for me. I told them I wanted to proceed with embolization to get it smaller but still he can not tell me how many embolizations, time between, how much to embolize.

My next step is going elsewhere. Unfortunately money is a huge issue even though I would love to say it isn't. This doesn't mean I wouldn't travel to someplace but would love for it to be covered by our insurance since we do have a high co-pay and deductible, two children whom I would love to be able to continue with their lives and activities (disrupting their lives as little as possible since I know they are already greatly impacted.)

My next step is to contact my insurance to see what places would be covered: Mayo Clinic, Barnes Jewish Hospital(both are within driving distance), then the further places like Stanford, and Barrow Institute.Then call the neurosurgeon and see who he would send his daughter to.

I do know that these are all different but was tired of hearing how complex it is. I believe complex is in the definition of an AVM. I just want to hear a doctor like the radiation oncologist who is sure of themselves and their decisions. Tell me what you think the best pathway is and then let me make the decision.

6

Elizabeth-what are you doing then? Leaving it alone, radiation, mixture?

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Hi again. No, leaving it alone is not an option for me. Finding the right surgeon is still the plan. I have been told conflicting recommendations for gamma knife. There are more risks and stress involved, imho, for me to have gamma knife. I want it out before I have more deficits. IF I have a bleed, I will lose right side and probably speech, even if it isn't a "big" bleed. Doctors have their own interest at stake when deciding about surgery. Embo. and surgery are the best options for me and that is what I am pursuing. Have a great day. ~Elizabeth

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I contacted BJH through the contact form. I am for sure going to send my tests and records for another opinion. My insurance company told me I could get up to 4 (second)opinions. I may take them up on it. Stanford and Barrow Institute are also in network so looking to send it there also.

I think ours are pretty similar although mine is on the right parietal just at 4cm. They are grading it a III (but in reality it is just not quite at the IV level)

I am not big on the surgery aspects because of the danger but the last doctor made embolization sound as dangerous as surgery. This is why I am looking elsewhere. Plus with the only seeing 20 a year and referring some of those on I know it is not the place for me. I felt confident in the neurosurgeon and radiation oncologist but not the intervention radiologist. He does not seem confident enough or experienced in this complex of an avm.

Have you looked at Barrow Institute and Stanford? I have read a ton and have heard only great things on both places for surgery. If I was to have surgery as my main option that is where I would be headed or John Hopkins.

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Hi there,

Just wanted to chime in with my own experience regarding treatment. I too have a right parietal AVM that is about 2.5cm, but is lacy and diffuse so there is additional healthy brain tissue interspersed with it making treatment risky. It is unruptured and I have had no deficits relating to it (my doc did so many tests to see if he could find a deficit but came up empty). I want to start off by saying that I love my neurosurgeon and if you are looking for somewhere kind of close I would suggest UTSW here in Dallas, TX. I know it isn't one that a lot of people hear about but the experiences I have had were fantastic. When I asked my doctor about gettign a second opinion he suggested Mayo or Barrow clinic and also suggested the University of Washington in Seattle which may be a little far for you. I asked him about Hopkins and he said he would actually suggest the Mayo over Hopkins. I would just wait for the weather to get warmer before heading out to Minnesota!! :P

Getting conflicting information regarding treatment is not fun. Because your hospital doesn't treat that many AVMs a year I think it would be totally fine to get a second, third or 4th opinion! If you don't feel comfortable with the answers your doctors are giving you, there is nothing wrong with getting a second opinion to make sure you are making the right choices. One question I have asked my doctors is "if this was your mom, sister, or child what would you do".

As for what we have decided to do, we decided to wait and see. Since I am not having any deficits so far or symptoms, my doctor doesn't want to treat it a s they feel I am at a low risk for rupture. Gamma knife would ahve a 75% chance of obliteration and because of the lacy and diffuse nature of my AVM with healthy brain tissue dispursed between it he feels surgery would be too risk and told me that if I already had a deficit then he would operate. My chance of rupture is 1% per year which I am okay with right now.

Hope this helps you somewhat. Please keep us updated on what you decide to do!

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Lindsay I did ask him what he would do if it was his wife. He said he would have it treated but could give no sure answer how exactly he would do it or where to go. This is why I am so frustrated. Send me somewhere else who does have the answers or suggestions.

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Hi there again!

I can totally understand how you feel on this one. I didn't get a second opinion because my doc deals with neurovascular issues such as aneurysms and AVMs all the time and I trust his opinion. But I did consider getting a second opinion at one point and based on the research that I did, if your insurance will cover it, I say go for it!

I would also check into using a FSA or HSA for travel expenses if you have one of the two. I have an FSA and noticed that you can use it to pay for travel and parking expenses to get medical treatment. That may be something to look into if you do decide to travel somewhere like Phoenix or Rochester.

I would check out the hospital/clinic websites and see if there is a way you can submit all of your tests and medical records to them first (I know Johns Hopkins does this). What they will do is review your records and if they feel that they disagree with the doctors you have already seen or that they can do something for you, they will have you come down for an appointment to discuss.

Barnes Jewish gets great reviews, but if you can go to the Mayo or Barrow you may want to review those. Dr. Spetzler, The main Neurosurgeon at Barrow is the one that the AVM scale is named after so I am sure he has seen a lot of them :p.

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Hi Robin,

I really appreciate your post because like you, I'm frustrated at getting the same news about my AVM. I was diagnosed 6 years ago and have not received any treatment thus far. I've gotten several opinions, but all I have heard is the risk is greater, and not to spend my time worrying about it. The results of my CT scans and MRI tests pretty much show the same results each time, so I'm guessing surgery or any other form of treatment might not be an option according to the neurosurgeon/neurologist. I too want to get another opinion by a neurosurgeon that specializes in treating AVMs. I would like to know what treatment option is best or if it's even an option. Most of my reports show a 1.5 cyst on the left parietal occipital lobe while other parts of the brain are unremarkable according to the MRI. Is this a reason why surgery or any other treatment is not an option? I really need answers because as I get older the AVM is getting worse -- the migraines and the heartbeats in my head (as someone mentioned in this forum), is the worst part (for me) of having AVM. I live on the Mississippi Gulf Coast and I don't know of any surgeon in this area who treats AVM patients. If anyone has any recommendations for one in close proximity, please feel free to share that info with me. I respect my doctors' opinions, and it bothers me to go beyond them to get other opinions. As I was watching "The Doctors" show the other day on finding credible hospitals, one of the doctors mentioned, if a doctor/surgeon doesn’t deal with certain cases, they should be willing to tell you and refer you to other doctors who have had experience with certain cases. I’m sure that is their protocol, and that’s exactly what they do, but sometimes I still have questions. Until I can get an opinion from a surgeon who specializes with AVMs, I'm afraid or won't be satisfied with doing nothing. Best of luck to all who is seeking the right specialists and treatment option. We must stay strong and positive, and keep the faith. God bless!

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My problem was this was supposed to me an appt where he went over the embolization procedure. How many, what order, the odds of different risks, etc. but that was not what happened. There is no plan, no talking between doctors, no experience.

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Joann, I think Emory University in Atlanta is somewhat close? If it were me, I would atleast send my info there to get Dr. Barrow's opinion. -GK

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Thanks for the info Greg. I had been seeing his name a lot, but didn’t realize he was in Atlanta. I can drive that distance. I take it he has done a lot of AVM treatments and surgeries. I’ve gotten opinions from both a neurosurgeon and a neurologist and neither have mentioned a treatment plan. They might feel my would be better left alone the way they see it, but I at least feel I need to get an opinion from a neurosurgeon or neurologist who specialize with AVMs. I will definitely check into it to see what Dr. Barrow thinks.

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Robin,

Glad to hear you are going for a second opinion. Just knowing that you have other options and that there are other experts in this field (than your first doctor) can be very empowering in and of itself.

I went to the University of Iowa for my first opinion, and then the Mayo clinic for a second opinion. The neurosurgeon at U of I was very aggressive with using embolizations, while their radiation equipment was not very well suited to the gamma knife procedure. Plus, the surgeon at U of I had only done a single AVM in my specific area before. It made me uncomfortable that they felt unable to give me any success rate percentages. My neurosurgeon at Mayo was less withholding with numbers, and believed my procedure could be done without any embolizations whatsoever. Guess who I went with. Just goes to show you, different physicians can approach these kinds of problems very differently.

On the subject of AVMs resected per year...honestly, I was surprised to learn that even my neurosurgeon at Mayo does only 20-25 AVM resections per year. That's not including the number of gamma knife treatments done by the resident radiosurgeon (if I'm remembering correctly). The tough truth is that AVMs are a rare condition, and don't always make themselves apparent. Thus, we have low numbers when it comes to AVM removal procedures.

All I can say is that it's important to go with a doctor you feel comfortable with. For me, it was a doctor who could patiently listen to my concerns. For others, it might be a doctor who tells them exactly how things are going to go down.

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JoAnn, Don't confuse Dr. Barrow with BNI in Arizona.(Barrow Neurological Institute)That is Dr. Spetzler's group, but I'm not sure that Dr. Barrow wasn't there at some point?!....I have read good things about Dr. Barrow in ATL and Emory is a teaching hospital that will have a TEAM to treat u if necessary. Best of luck. -GK