Which neurosurgeon do we choose?

August 30, 2009 10:18 AM

We've gotten the second opinion - it disagrees radically from the first. What on earth do we do now?

In the ongoing quest to heal our daughter's back, insurance would not cover our first neurosurgeon (Fred). We got the name of a second neurosurgeon (Ethel). Ethel is an excellent doctor by all accounts - but...she won't see us. It took her four weeks to look at the films. She spoke with my daughter on the phone for 15 minutes. She disagrees 100% with Fred, who advocates spinal fusion now with enough time to heal so she can go back to school next semester.

Ethel says, wait another year, and then, if you haven't healed, we'll do surgery. Ethel says she has reasons for believing this - something she promised to show us on the scans. She said to call her office for an appointment. When we called for an appointment, the office refused to schedule one. Ethel's a busy woman. She doesn't have time to see an 18-yr old with a broken back. Four times, now, the office has said they would call us back - four times they have not. I know we're driving them crazy - but we think their behavior borders on unethical.

Spinal surgery is difficult. This one will be extremely difficult. It would be nice to think that in a year, our daughter will have healed. Meanwhile, though, she is at risk that any bump or blow will dislodge her spine and leave her paralyzed or worse. She cannot go anywhere or do anything. She has no life.

She will not see Ethel until October. Insurance has now said (after wasting another month) that she can go back to Fred and have the surgery.

Meanwhile, she has had no doctor's care whatsoever, with a broken spine, in 5 weeks. None. Ethel prescribed a back brace, but gave her no instructions on how or when to wear it - until my husband called - annoying the hell out of Ethel and her office. My daughter has already not worn any brace or support for over a month.

Ethel is supposed to be fabulous and communicative. Fred, who is also an excellent neurosurgeon is always available by phone. Has staff who will answer all of our questions. Fred's office asked us, did Ethel really look at the scans? All of the scans? We don't know, because Ethel won't talk to us.

By all accounts, Ethel is one of the best surgeons out there, which is why we have put up with this crap this long.

If it were just a pissing contest (which it clearly is) between two surgeons, I wouldn't care, but our daughter's life and health depends on this. What do we do? I know, get a third opinion - but we've already been told that they're all just guessing based on past experience. No one knows what the right answer is. So what do we do?

posted by clarkstonian to health & fitness (27 comments total)

If this wasn't about something as serious and important, I would say to judge people by what they do, not what they say they will do. You can't have a useful relationship with someone who refuses to talk to you or answer your calls.
posted by devnull at 10:26 AM on August 30

That's our theory, too. But in this case, it doesn't necessarily apply, which is why we feel so frustrated and helpless. Ethel is a great surgeon. Her name comes up all the time when you ask for recommendations. Her office seems to believe we're imposing on them. I'm having a hard time understanding it.
posted by clarkstonian at 10:35 AM on August 30

Guessing based on past experience is essentially what diagnosis and prescribing the right treatment is, except it's informed by medical training and looking at signs. It's the best physicians have got.

I, for one, would not see a physician who acts like Ethel. She seems to be communicating that she doesn't really care about your daughter's well-being. Find another neurosurgeon if you want to have a good second opinion. 'One of the best surgeons out there' does not mean they will work well with you.

Talk to an orthopedic surgeon too who deals with spinal injuries, preferably one that will work with your neurosurgeon.
posted by kldickson at 10:35 AM on August 30 [1 favorite]

If you're in the DC area, I can give you the name of a fuckin' awesome neurosurgeon who not only has had presidents and first ladies as clients but also saved my dad's life.
posted by kldickson at 10:38 AM on August 30 [1 favorite]

You're not going to get care for your daughter, until you make a decision. Waiting to see Ethel is, necessarily, postponing care, and that, in and of itself, is a decision you've made, at this point. Whether that is harmful to your daughter, I'm in no position to say, or not, since IANAD.

You need to get enough information to make a rational decision. If you're feeling that this delay, and your daughter's practical immobilization are detrimental to her health, or her mental well-being, then it seems like you are going to have to find another surgeon who can review her case, examine her, and give you an opinion that will help, not delay, your decision making process.

So, get a third opinion, recognizing that there may not, in fact, be a single, unambiguous "right" answer. But continuing to delay making a decision, because you don't think you have all the facts, is nevertheless making a decision. But that's a very passive, and long term unsatisfactory way to arrive at a course of action.
posted by paulsc at 10:41 AM on August 30 [3 favorites]

Surely there are more than two doctors available to you. Get another opinion. The opinion of Ethel means nothing if you can't get her to look carefully at your case.

There is a trend in medicine to more conservative treatment of spinal cases. Doctors used to do spinal fusions at the drop of a hat (slight exaggeration) but many now advocate a wait and see approach that allows the back to heal on its own. To determine if this applies in your daughter's case you need at least one more opinion or even two more opinions. Do this even if you have to pay out of pocket. A consultation shouldn't break you.

Spinal fusion is radical surgery and will have permanent effects for the rest of your daughter's life. You can't undo it. If she can safely wait, it might be worth it in the long run. You need another opinion to determine the risks. Forget about Ethel. She is too busy to help you.
posted by JackFlash at 10:43 AM on August 30

Can you get Ethel's email? And -- what does your daughter think? For me, I'd probably be too nervous waiting for a year with a brace but with the risk of dislodging. Others might be able to do it to avoid surgery.
posted by ClaudiaCenter at 10:44 AM on August 30

Clarkstonian, can you tell us where you and your daughter live? (I couldn't find any mention of a location in your previous posts). As exhausting as it may be to face to prospect of seeking a third opinion, I'd like to believe that there's another excellent surgeon within driving distance of your home who can offer you some guidance and won't treat returning your phone calls as a burden. Maybe we can help you out with names and ideas.
posted by foxy_hedgehog at 10:57 AM on August 30

First, it sounds like Ethel does not want to be seen as taking over Fred's patient and essentially calling him an idiot. That still does not excuse her behavior, but may partially explain it.

I have had three back operations, the last one being a spinal fusion. The first two were done by the guy with the reputation as being one of the best in NYC. He was a good doctor and a good man. I was in a large upper west side teaching hospital that was over crowded and not personal at all. It was 45 minutes from my home. When my back started hurting again and knowing that the next step was a fusion, I went to the local surgeon in the suburbs here. He did not have the reputation, but he was confident, answered every question I had, gave me the risks as well as the rewards and told me that whatever or whenever I decided he would be ok with it. I went back to surgeon #1 and he confirmed that the next logical step was either live with the pain or have a fusion.

I consulted with a childhood friend who lives across the country but does spinal operations. I sent him my films etc. He agreed a fusion was in order. I asked him who should do it. He gave me short and simple advice. First, be sure you are comfortable with the person doing it. Second, half the doctors in the country graduated in the bottom half of their class and even the ones who graduated in the top make mistakes. Third, make sure you get good and timely follow-up care both in the hospital and after going home.

It was a no brainer after that. I picked the local guy who operated in a hospital 10 minutes from my house where I got a single room and all the attention I wanted. He took my phone calls day and night. Literally. Even now, 5 years later, whenever I want, he takes my calls or returns them promptly. I serve as a reference for him whenever he is asked for a patient reference. That, even after it turns out he made a small but important mistake. (He missed the bone when screwing in one of the supports). But, it had no long term effect, but more importantly, the way he handled it was great. He admitted it should have been in the bone, he could go in and fix it, I could get someone else to fix it, or we could leave it. (I left it on advice from friend doctor). He was a professional class act all the way.

My point it Ethel sounds like s d-bag and Fred sounds like a decent man. Maybe get a third opinion if you are not comfortable with Fred. I also think that a lot of people think that some sort of action has to be taken or they are not treating something right. But, patience is often the correct course of action. I do not know if you should operate or wait, but I do know you should make that decision with someone you trust not based on reputation.
posted by JohnnyGunn at 10:58 AM on August 30 [2 favorites]

God I feel for you. Fuck Ethel and her office. Seriously. You can't deal with that. In the meantime while you're waiting for a third opinion, see a psysiatrist and a neurologist. If you haven't already they might be able to help you think through your options. Ignore and see another if they try to sell you on shots.

I got "the best" neurosurgeon to work on my back and still I ended up with chronic, debilitating pain. Was it his fault? Who knows. But by God the aftercare was horrible, his office staff left me in tears on multiple occasions. Did I mention four years out I live in chronic pain?

As you know you're dealing with a branch of medicine that no one really knows a flying fuck about. I've gotten radically different diagnoses and treatments from each well-trained specialist I've seen.

Whatever you do, do NOT allow your daughter to become active. After the fact every specialist I saw agreed that Famous Teaching University's advice to do as much intensive physical activity as possible contributed to my permanent condition. She's going to need physical therapy anyway, so don't risk making things worse right now.

See as many doctors as you can, let your daughter rest, and then make the best decision you can with your primary care provider, the specialists you trust most, and listen to your gut feeling. Ultimately, what I'm saying is, there might be no "right" answer.

One thing is certain, though: Your daughter has got a long road to recovery ahead of her. Take the time now to get as much information as possible before you make a decision. In the long run that is the best thing you can do. And seriously fuck Ethel. If Ethel doesn't have time for you now, she sure as hell won't have time with you after the surgery. That's the way surgeons work: operate, fix/remove the problem, and Voila! You're fixed. Real life bodies do not work that way. Apologies for the rambling nature of this comment.
posted by vincele at 11:00 AM on August 30 [1 favorite]

You need a second second opinion. Take Ethel's comments as inspiration to get a second opinion, but obviously you do not want her as your daughter's doctor.
posted by Sidhedevil at 11:10 AM on August 30

You need a third opinion, at the least.

I have a friend who had her spine fused. Her life is very difficult. She cannot stand or sit upright for very long. At the funeral of her father a few months ago she drove across the country so that she could lie flat in the seat (impossible in the airplane) every 20 minutes or so, and then she attended her father's funeral lying flat in a blue plastic beach lounger.

Luckily for her, she had a full life (50 years) before having her spine fused, but these days her life is very challenging.

Take your time making this significant decision, and get a third, and perhaps a fourth and fifth opinion.
posted by arnicae at 11:15 AM on August 30

I second a third, fourth and fifth.
posted by rokusan at 11:32 AM on August 30

Third opinion, for sure. I wouldn't pick Ethel as my daughter's doctor, but her comments may have been valid nonetheless.
posted by insectosaurus at 11:49 AM on August 30

How can a surgeon confidently propose postponing major surgery without examining the patient in person? That sounds very odd to me.

In any case, you need a third opinion, from a doctor who does her/his job correctly.
posted by fourcheesemac at 11:50 AM on August 30

We live in the metro-Detroit area. There are a number of good surgeons here - not all of them are availabe to us, but some of them are.

Arnicae, this is what we're worried about - that no matter which course we choose, she has a lifetime of pain ahead of her.

Fred has said that at her age, she should have healed. The fact that she has not is a pretty good indicator that she will not. He's said the broken pieces of bone are now wrapped with scar tissue, and bone cannot adhere to scar tissue. It makes sense to us, but what do we know? Ethel says give it time, it will heal. We had a friend who had a similar L5 fracture at a young age - he healed in 3 months (in the sense that bone had fused in 3 months, not that he was all better).

Vincele, this is kind of what we're feeling - but what if Ethel is right? Ethel is the neurosurgeon to one of the sports teams here and sees lots of fractures. Fred is a top trauma neurosurgeon. Our PCP is going to ask another neurosurgeon. We have the name of a 4th. Unfortunately, it takes 2 weeks to send the films for each consult. So that's more delay.
posted by clarkstonian at 11:54 AM on August 30

Is it possible for Fred to consult with Ethel? I would assume it would take her 2 minutes to explain to him why she wants to wait and what she is looking at on the films that she "promised" to point out to you. Then he could relate this to you and perhaps offer the same alternate treatment.

I wouldn't say these treatments are radically different, they are just trading off a year of your daughter's life of low quality for potentially higher quality for the remainder of her life. Fred should be able to explain to you, or more importantly your daughter, what the pros and cons of doing the surgery now are.

I would also get a third opinion from someone you can sit down and talk to, even if they are not as prestigious as Fred or Ethel. From your prior posts, I believe you are close to Detroit, so that shouldn't be too hard to find another. From the sounds of things, I think Fred is your man, though.

Also, I'm not sure where you are getting your recommendations, but I would recommend talking to the physiotherapists in your area, particularly those covered by your insurance that she will be using after her surgery. They may be able to give you the most practical advice on the limitations or benefits your daughter will have if she follows either path of treatment.
posted by Yorrick at 12:01 PM on August 30

Ethel may see lots of fractures, but Fred is a top trauma neurosurgeon. Your daughter has gone through trauma. Go to the trauma neurosurgeon and get a second opinion.

Consult as many neurosurgeons as you need to and find out what your options are.

Depending on the impact on her life, I'd make sure the neurosurgeon also knows about pain management.
posted by kldickson at 12:16 PM on August 30 [1 favorite]

Definitely seconding that Ethel needs to go. Listen—you said it yourself, this is your daughter's livelihood we're talking about here. Ethel is, at best, offering you her opinion from her periphery, and at worst, just spouting off something based on a glance and a hunch. Go with the doctor who actually cares and communicates. If you go forward with Ethel, why do you believe that her approach, communication, and basic lack of decency will improve at all?

She's too busy for your daughter, and she will likely continue to be. You can't have that.

Get a third opinion from someone who will actually look. Hell, consider it a second opinion, since Ethel's is basically shit. Get the information you need in front of you, from multiple sources, so you can try to weigh them all and make the best decision you can. This is incredibly important here, and while Ethel keeps coming up in discussions and is highly recommended, I think you need to consider her dead to you and just not an option.
posted by disillusioned at 12:48 PM on August 30 [1 favorite]

Since you're in Detroit, have you considered going up to Mayo?

If your daughter needs a fusion, there is a new procedure called XLIF you might want to look into. XLIF involves accessing the spine from the side instead of the front or back and they claim offers greatly reduced recovery times. I have no idea if it would be appropriate for your daughter, but my friend with multiple herniated discs is looking into it. The "find a surgeon" link on the site shows one in Warren, MI, which doesn't look too far from Detroit.
posted by IndigoRain at 2:42 PM on August 30

IndigoRain, I hadn't heard of XLIF, but I'll look into it. I'll look into anything. Mayo is far. With a broken spine, a trip of a few miles is exhausting and painful - a flight and all it entails, unimaginable.

I think you all are confirming what we already believe - this doctor, while good, is not good for us. If Ethel won't talk to us now or return our calls, she's not going to bother with follow-up care. And more than her, it's her office. They've said on at least four occasions they would call, and then they didn't. We were told we'd get an appointment, and then they said, "We never said that." The office manager is never actually in the office. The nurse goes home at noon. The people at the desk don't care. Ethel could be the best doctor in the world, but if never there, it's irrelevant.

Fred's staff is there - they return calls. They're not always helpful, but they do always try. They've never flat out lied to us or ignored us. The only problem we had with them was that insurance wouldn't cover it. Now, it will. Or so they say. I'm sure if we decided to wait it out, Fred would be willing to do that with us. He just doesn't believe it will work.

We'll seek at least one more opinion. You have all helped to clarify the issues. Thank you.
posted by clarkstonian at 2:54 PM on August 30

Oh, and as for Fred & Ethel communicating? Never going to happen. Each one basically says the other one is incompetent.
posted by clarkstonian at 2:56 PM on August 30

Ethel is the neurosurgeon to one of the sports teams here and sees lots of fractures. Fred is a top trauma neurosurgeon.

Professional athletes are a) insanely incredibly fit which increases recovery time and chances of healing and b) surrounded by a big support network with money and resources and information. So it kind of makes sense for Ethel to be treating them like this, they don't need her time so much and their recovery profile may be different than someone with a more normal level of fitness. But I don't think your daughter and your family fits this profile, you don't have the same resources and information and her ultimate goals may be different than a top sports person anyway. Whereas Fred work with trauma patients, which is what your daughter is, so it seems to me like he's a better fit anyway.

So I wouldn't feel bad at all about bypassing Ethel if that's what you decide. Her speciality, her approach and her attitude aren't what you need for this particular case regardless of how many good reviews she's had for other cases. Either go back to Fred or get another opinion and focus on what works for you guys. Good luck!
posted by shelleycat at 3:17 PM on August 30 [1 favorite]

Research. Search PubMed and patient support groups and Cochrane.org (this does research reviews, used by NHS in Britain often in determinations of what works best and what to cover) -- see if there's an evidence-based answer to this question.

There's a lot of unnecessary back surgery done-- and a lot that turns out to make things worse, even though doctors very strongly recommend it. If there's data that will allow you to do so, go with the surgeon whose view is supported by data. There may not be data that is relevant to her particular condition-- but there may be. Find out.
posted by Maias at 3:51 PM on August 30

See Fred. He is willing to talk to you. His staff is willing to talk to you. You say he is a top trauma surgeon. That right there is enough for me.

Even if Ethel is the most wonderful spine surgeon in the world, if it's a two month wait to see her, she won't answer your questions, her staff won't answer your questions, and she is a douchenozzle, then she is not the spine surgeon for you.

I have been through dozens of doctors, trying to find answers for what is wrong with me. Some are more patient then others, some are more interested in helping than others, some obviously do not give a shit at all. There is more to being a good doctor than being an excellent diagnostician. You have to care about people.

So, if you want to, get a third opinion, if you can afford it. But if Fred is going to be covered by insurance, go with him.
posted by misanthropicsarah at 4:50 PM on August 30

Clarkstonian, please check your memail.
posted by vincele at 6:18 PM on August 30

New information regarding the two different opinions. I learned today that Ethel misread, or incompletely read the scans. She looked at a tiny part of the damage and drew her conclusions from that. Fred was right all along. Surgery is necessary. We will proceed.
posted by clarkstonian at 11:57 AM on September 3