Questions to be sure to ask surgeons at consults

[Back-out]

I saw three scoliosis surgeons in NYC in March for my first ever "back consults" exclusively about my scoliosis/surgery. I've known I had scoliosis since my early twenties, but for most of the time since (I'm 64), it's been forgettable until the last decade. That period marked major deterioration - more pain and deformity, much reduced function and at least 4 " height lost. All travel became so hard I wasn't even able to go for consults until my older son donated his Spring Break to take me. Living in a "remote rural area" to quote one surgeon's notes, made/makes it harder to get places too.

I was very stressed out on that trip. One result was I didn't have my thoughts collected. I've since gotten their reports including an operative plan. This helps, but it's not the same thing as being there in person and able to engage in a fruitful give and take to really understand what each particular surgeon "stands for". As I prepare to see a few more surgeons, I'm resolving to do better in that precious interview time - especially since I know return trips will be almost impossible. I don't even really know how I'm going to make these trips...

Please help me prepare for the consults. My goals (always good to define) are: to get a sense of the man and his approach to aid me in choosing a surgeon, and -- what? How does he define my problems (numbers would help - grades of spondylolisthesis, kyphosis, Cobbs), what would he plan for my surgery and - within reason - why? How many "like me" has he done (and how many adult back deformity cases does he do annually)? What does he think would happen to me without surgery? What does he see in my future if he operates on me - likelihood of success, odds of needing more surgery, correction obtainable (including cosmetic), special risks and/or advantages he sees in my presentation (e.g., osteopenia)?

I'd like to ask more detail questions (such as, his use of braces and rehab - they matter a lot to me as I try to picture coping, under my unique circumstances). Maybe in the interests of time I should relegate such inquiries for the future, though (emails, via his P.A.). What should I make sure to ask and what do you see as the most important issues I should address while I'm there with him, face to face? What are the most important understandings we should reach, before I leave? I feel I flubbed my chances before and want to come with a good list and better focus, this time.

[jrnyc]

Which surgeons did you see?
wondering whether Dr Boachie was one of them...?
not sure what "each surgeon stands for" means...? do you mean their approach, i.e. minimally invasive...?
assume you will be bringing your films, disc copies of MRI, etc...?

jess

[Back-out]

Which surgeons did you see?
wondering whether Dr Boachie was one of them...?

jess

Neuwirth, Errico (who wants me to see his co-surgeon, Frank Schwab) and Federico Girardi HSS. Couldn't see Boachie because of finances and couldn't see your Dr. Lonner (I much wanted to) because he was out of town the one week I had to schedule.

I'm still hoping to return to see him, but overall I'm not feeling too great about having surgery in New York. Compared to other relatively nearby locations, it's proximity is actually illusory because of the awful transportation network linking me to NYC. I have no real way of retuning for routine visits (much less emergency). Also, surgery would cost me far more there because of lodging and transportation costs every step of the way.

If only there were ANY direct public transport! Flying costs far more than going to the West Coast, even though it's only a five hour drive - for anyone who dares brave the traffic and pay parking costs (more than hotels cost elsewhere).

Who did YOU see, Jess?

[Back-out]

Surgeon "stands for" means their overall approach - conservative versus more radical in terms of correction sought (cf. ConfusedMom's great comments to ChrisWBS abt Gupta's approach).

The probable trade offs, from one to the other - as best I can determine them, after interviews and research. This includes my best assessment of their surgical plan and what it would mean for me.

[jrnyc]

i saw Dr Neuwirth, Dr Boachie, Dr Lonner, Dr McCance, and another guy who often works with the Errico crew...cant remember the name now...it was at the beginning of my search...and Dr Anand in CA...they all basically recommended the same thing, same levels fused, etc...though of late Dr Anand and Dr L. recommended minimally invasive...if i went back to the others, maybe they would too..dont know...

does Amtrak go back/forth from PA??..i know the travel is awful...but the trade off for getting a top NYC scoli surgeon...well...! i have to travel each way 3 hours on train plus 35 minutes to train each way...and there's always the lovely wait on the platforms...standing (barely) plus the cabs (necessary) to and from doctor offices...but i wouldnt consider having the surgery anywhere else on the east coast!! i go in every month at least once to my pain doc.....
i know Anne (Admoul) traveled as well...Dr L. was going to put her in rehab afterwards, but she said she did so well after surgery, despite the excessive bleeding, that he sent her home instead!

i wouldnt hesitate to ask the surgeon for trip to rehab...for as long as possible!

jess

[Back-out]

Derailment (haha), but...reality check.

All good ideas, Jess.

The only Amtrak train for us, leaves once a day from an unmanned station 45 mins from home (unsecured parking too, but who's counting? ), also returning once a day from Penn Station. Departure 11 AM for six+ hr. trip, return also AM from NYC. Means I'm forced to spend two nights in a hotel for a single appointment! You know what that costs, even at the buggy Y and not counting cab fares, porters, relying on luck to get on and off trains especially in Lewistown, PA.

The bus is even worse. A change at Philly with lay-over, and total travel time = a full day. No parking at all at local bus station! What's more - don't know abt you - but I can no longer carry anything except a backpack purse. Naturally, I couldn't even carry that post surgical. If I need to pay a companion - oy va voy! To have a helper for surgery - think what that would cost for their hotel etc., even while I'm in rehab.

Cheaper to get to MO (St Louis), so I will.

It's like a plot. I love New York, but it's not really as close to us as it seems - nothing like Anne's location. Nuttin here but the football team! Even the med school was deliberately located two hrs from the main campus (here). The Hershey family contributed so much the UNI agreed to put the med center in their factory town.

[LindaRacine]

I've said this many times before, but it bears repeating. I do not like the idea of going in to see a surgeon with a whole bunch of questions suggested by someone else. I see firsthand how that doesn't work in the clinical setting. Instead, I recommend that you listen to the surgeon as carefully as possible. (Believe me, it's difficult when they're coming at you with a lot of information, especially if they're using unfamiliar medical terms.) Take notes if necessary. Ask questions that you think of in response to the surgeon's statements. Also, if the doctor is being too technical, let them know that they need to dumb it down a bit. Ask the surgeon how s/he wants to handle any questions that come up after the appointment. Then, go home and spend an hour or two really thinking about what was said, and write down the questions you have. If you're unsure of anything that you heard (or thought you heard), you might want to ask for a copy of the dictation from the appointment.

--Linda

[jrnyc]

Hi Amanda
that's really too bad! i know the time from the train station Philly-NYC is about 3 hours once on train...about same for Hershey...and i do know there are business folks who actually commute daily Philly to NYC...round trip!

so i guess you must be located closer to St Louis...too bad you just have that one train station...hope there are more frequent trains to St L. than once a day!

i make the round trip Amtrak in one day...rarely stay over nite......it's very tiring...i go at least once a month for pain doc...

jess

[Back-out]

Hi Amanda
that's really too bad! i know the time from the train station Philly-NYC is about 3 hours once on train...about same for Hershey...and i do know there are business folks who actually commute daily Philly to NYC...round trip!

so i guess you must be located closer to St Louis...too bad you just have that one train station...hope there are more frequent trains to St L. than once a day!

i make the round trip Amtrak in one day...rarely stay over nite......it's very tiring...i go at least once a month for pain doc...

jess

No, St Louis is 1400 miles from me, but RT airfare to there is ~$250 compared to $475 NYC. Lenke's office also arranges lodging that costs only $50/night. FWIW I'm four hrs. from Philly - if it's a direct drive. Similar rigamarole if I have to take the train or bus there.

This place will be the death of me! It HAS caused the death of friends of mine with different medical problems. Our hospital is a death trap.

[Back-out]

I've said this many times before, but it bears repeating. I do not like the idea of going in to see a surgeon with a whole bunch of questions suggested by someone else. I see firsthand how that doesn't work in the clinical setting. Instead, I recommend that you listen to the surgeon as carefully as possible. (Believe me, it's difficult when they're coming at you with a lot of information, especially if they're using unfamiliar medical terms.) Take notes if necessary. Ask questions that you think of in response to the surgeon's statements. Also, if the doctor is being too technical, let them know that they need to dumb it down a bit. Ask the surgeon how s/he wants to handle any questions that come up after the appointment. Then, go home and spend an hour or two really thinking about what was said, and write down the questions you have. If you're unsure of anything that you heard (or thought you heard), you might want to ask for a copy of the dictation from the appointment.

--Linda

Good advice, Linda. Thank you! It's what I tried to do the first time around, but I was kind of shell-shocked (especially after being told I'd need more surgery) and neglected to take good notes. Seeing two of the three surgeons on Thurs. afternoon (the only day both schedule) didn't help! Back and forth, forth and back...Trying to get my foot in both doors. Yes, I got the office notes later, too - both had improvised because of the complicated appt arrangements.

But you're absolutely right. I need to be prepared for what I hear on the spot, and think on my feet. Just what's hardest! Only meditation, a good night's sleep (if possible) and maybe a pinch of Klonopin can help with that.

Also trying to remain focused on my primary goals - um, whatever they are. ARGHH.

Sounds like from what you hear at the water cooler, your office docs aren't too crazy about pts coming with a long screed of prepared questions (?).

Maybe I'll ask permission to record our interview as a memory jog, and per TitEd's comments elsewhere, rely on emailed questions thereafter out of deference to their time.

[jrnyc]

i thought you said that Lenke will only be operating on the really big or the most problematic curves (once he takes his position at SRS)...you specifically said he wouldnt operate on mine..

so how are you now going to have surgery with him...i dont understand...

jess

[Back-out]

i thought you said that Lenke will only be operating on the really big or the most problematic curves (once he takes his position at SRS)...you specifically said he wouldnt operate on mine..

so how are you now going to have surgery with him...i dont understand...

jess

When I said "Lenke's office" above, I was loosely referring to the facility's arrangements. I'm planning to see Bridwell in St Louis (still just a possibility, remember!). No, I can't see Lenke for that and timing reasons.
Don't remember making any comments on your curves, though! For all I know, they "qualify".

And BTW his office corrected me. He has ALWAYS had a severity cut-off for accepting patients.

[Debra JGL]

Amanda, I think the most important questions I've asked come from Wolpert's book; "which levels would you fuse, why", "what surgical approach would you use, why" (anterior, posterior, both), "How much correction is achievable","do you foresee any unusual complications or risks in my particular case", and "how many surgeries have you performed on cases similar to mine". It sounds like you're really doing your due dilegence with this, and I'm sure the first round of docs you saw will help you to understand future ones. I think the tape recorder is a great idea if they'll let you. I know when I went with my husband, he definately heard things I didn't hear and sometimes his impression was different from mine. So it would be great to review what the doc said a second time. It's nerve wracking looking for a doctor who you're going to put your life in his/her hands, it sounds like your working hard to find one you trust and feel good about the surgery they want to perform.

[TexEx]

I found an excellent source of questions for the doctor from David Wolperts book Scoliosis: The Definitive Patient's Reference Guide. It gave me things that I did not even think about because I was not into the forum prior to reading it.

Also, more important to me than questions, which I am not sure anyone has mentioned, is to take another set of "ears" to the appointment. I took my sister to every appointment with me. She is a Physical Therapist so I am lucky to have someone who understands the lingo. But and is good to have, because you can get so emotional or wrapped up in one things, you might miss something else that the Dr is saying. It also give someone to take notes while you listen. You have probably gotten that advise before, but I did not see it so I thought that I would chime in.

Good luck with your appointments. I am so sorry that you have to go throught so much to get to a good doctor.

Oops, I missed reading the prior entry, I guess bring someone with has been brought up. But it is still a great idea.

We are blessed in Houston with many good doctors in most any fieild of medicine available

Melissa
46 years old
T9-L5 Lumbar Fusssion
Pre Op 60 Degree
Post Op 20 Degree

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[LynetteG]

I agree with the others about reading David Wolpert's book and getting an idea of questions to ask your surgeon from there also - I did that too. I've read his book over and over and over. It was a fantastic help to me. Do you have that book Amanda?