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Back-out
06-24-2010, 03:41 PM
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
06-24-2010, 05:56 PM
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
06-24-2010, 06:06 PM
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
06-24-2010, 06:12 PM
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
06-24-2010, 06:24 PM
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):rolleyes: 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
06-24-2010, 07:16 PM
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? :rolleyes:), 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. :D :( 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! :mad: 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
06-24-2010, 07:28 PM
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
06-24-2010, 07:29 PM
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
06-24-2010, 07:43 PM
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
06-24-2010, 07:56 PM
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
06-24-2010, 08:12 PM
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
06-24-2010, 08:16 PM
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
06-24-2010, 11:08 PM
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
06-25-2010, 06:05 AM
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

.

LynetteG
06-25-2010, 06:18 AM
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?

Snoopy
06-25-2010, 06:57 AM
Nuttin here but the football team! :mad: 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.

Yeah, but the football team is awesome! :D

There are fantastic doctors in Hershey. As I've said many times before, I took my daughter to five doctors and the one I allowed to do my daughter's surgery was in Hershey.

As far as a list of questions to ask, I agree with others, you need to ask what is most important to you. I always tried to take the same person with me to all appointments. I also took a list of questions with me to every appointment-regardless of whether or not it was the 1st or 20th appointment. I made sure to put the questions in order of importance to my daughter's concerns and then mine. I found by taking notes during the visit, the doctor usually answered all my questions before I needed to ask. Because your time is usually limited (although our time with Jamie's surgeon, however was never limited, he always gave you all the time you needed), be sure to only list questions appropriate to that visit.

Mary Lou

Confusedmom
06-25-2010, 04:06 PM
Hi Amanda,

Having seen three offices/four surgeons now, I definitely got more out of the ones I thought about and wrote questions for before-hand. Granted, they DID look at me like I was a total wacko when I pulled out a four-page list of questions, but I told them that I used to be a journalist (true).

Anyway, I too used Wolpert's list and also Schommer's list from Stopping Scoliosis. Also, I took notes for a few weeks from reading this forum and asked questions based on that.

For you specifically, based on things we've talked about, I would focus on the levels of fusion and the likelihood of need for revision surgery based on how you do the initial surgery.

Also, I did ask "What kinds of complications have YOUR patients had?" This has been very interesting because my main doctor has had two patients die, and he told me about them. (Both had other major medical problems besides scoliosis.)

When are you going for your next consult?

Evelyn

Back-out
06-25-2010, 08:12 PM
Hi Amanda,

Having seen three offices/four surgeons now, I definitely got more out of the ones I thought about and wrote questions for before-hand. Granted, they DID look at me like I was a total wacko when I pulled out a four-page list of questions, but I told them that I used to be a journalist (true).

Anyway, I too used Wolpert's list and also Schommer's list from Stopping Scoliosis. Also, I took notes for a few weeks from reading this forum and asked questions based on that.

For you specifically, based on things we've talked about, I would focus on the levels of fusion and the likelihood of need for revision surgery based on how you do the initial surgery.

Also, I did ask "What kinds of complications have YOUR patients had?" This has been very interesting because my main doctor has had two patients die, and he told me about them. (Both had other major medical problems besides scoliosis.)


Yep, I'm WAY behind the curve in not having gotten the Wolpert book yet. Just the kind of important thing I've put off for no good reason while diddling with more trivial business (erhum, WILL do!). That and Curves (and a bunch of recreational goodies) sit on my checkout list at Amazon gathering virtual dust.

I like your ideas, and thank you! Undoubtedly the more you know somebody the more such advice can be individualized - what can be most to the point. (And everyone else's kind advice has been VERY helpful and appreciated too - you're all treasured friends! :) That also goes for advice I got searching the site too, lest anyone think I neglected to check the archives. Special thanks to Lynette, for her fabulous list, posted some months ago!).

Back-out
06-25-2010, 08:17 PM
When are you going for your next consult?

Evelyn
In answer to your question, my next appointment is this coming Weds, at Johns Hopkin's where I'm to see Dr. Khaled Kebaish, Doodie's doctor. (Aside from his medical acumen, I'm bracing myself not to be unduly swayed by his devastating good looks! :D).

From the POV of location, he's the best going as JHU is "only" three hrs from home and, in fact, I'm able to avail myself of the generous services of a volunteer ride services to go. The same goes in future for return appointments and even for emergencies! For my backwoodsy locale, that's practically right next door! However, I worry about his policy of doing posterior and anterior a month or more apart. That could REALLY throw a monkey wrench in my hopes of S-I-L's help....much as it's already in doubt (hate to admit it in print - Amanda, DELETE THIS SOON!)

Thereafter, I too will visit Dr. Bridwell, and mid-August, Dr. Christopher Shaffrey (Daily Strength's incredibly credentialed doctor), though I don't yet know how I'll get there. He's $650+ RT away from here (Charlottesville, VA) which is almost double RT to San Francisco (and FWIW the same as the latest RT special from here to London! :mad: How lovely it would be to visit one of my best friends there!).

Such are the vicissitudes of travel from my "hometown" (lived here since '81 but, in fact. still feel alien and am dying to leave). However, per Google Maps, Dr. Shaffrey is actually "only" a five hour drive away - almost a perfectly straight line! Thus, he might turn out to be my ace in the hole, especially as he's BD-certified in both neurosurgery AND orthopedic, with specialization in deformity!

However, reputedly he NEVER schedules surgery before trying everything else in an effort to avoid it. As a revision specialist, that is admirable. refreshing, informative - and frightening! Besides, more delay might push me out of my insurance time-line.

Furthermore, most unfortunately, five hours is out of the travel range of the volunteer ride service - so near, yet so far. I'm hoping to hire someone reliable to transport me - somehow. You all know how very reliable that "someone" must be. S/he must act as my chauffeur to return for check-ups post-surgery (i.e., pre-fusion!), as well as in case of emergency complications! None of us count on such outcomes, but it would be irresponsible not to have a plan of action, just in case.

So, TMI. But there's my consult itinerary anyway. I'd like to return to NYC to see Dr. Lonner and also to get Frank Schwab's opinion (he's Errico's brilliant young surgical partner, to share "complex cases" - like me). However, finances rear its ugly head again and reminds me, that NYC ought by rights to be out for me, unless I have absolutely no good alternatives. It's the associated expenses that are apt to slay me on this deal- i.e., travel, lodging, house adaptation and help. That's since I should have no out of pocket medical if I've figured the insurance angle out right. (Thinking of hiring a patient advocate to insure I don't get stuck with a $45K out of network organ holder, like Shari :eek: ).

Back-out
06-25-2010, 08:36 PM
Mary Lou,

I don't mean to belittle Hershey at all. I know there are great doctors there and I know you choose your daughter's doctor with the utmost love and care. I have the feeling, though, that the pediatric scoliosis surgeons are the front-runners there. Frankly, my spine is so "complex" I can't afford to take any chances. It already looks probable that I'll need more surgery down the road - God help me, but it's so. (How, I'll do it I do NOT know, but then I don't even know how I'll do this one)

At least, I want to know I didn't cut any corners in warding off that outcome. (And hey, I could die of something else first! That's how doctors look at it.)

No cutting corners, short of bankrupting myself utterly to go with Boachie, that is! Or having a go at making the rounds of CA docs too. As soon as I finish the consults, I'm going to set a surgical date with whomever and whenever it seems best and most feasible in terms of (god-willing) help. At that point, I'll engage in a mad scramble to get my house in shape. (Right now let's just say, no walker could maneuver a single room! Hey, I haven't been able to walk or stand without support for ten years! :()

Then, even if the Angel Gabriel visits me and tells me NOT to have the surgery between the date-setting and going under, I'll still have the house in order and repaired (relatively, anyhow) - paperwork too. That means hiring a "home assistant" since I'm still not mobile enough to do it myself. Doing these jobs are almost as important as my back! This plan is the only one I can live with and still be able to prepare and process the decision within my fierce time constraints.

Time constraints are really money constraints. Without explanation, I'll just state that having the surgery after mid-Feb will end up costing me up to $70K more than before! :eek:

jrnyc
06-25-2010, 08:57 PM
hi Amanda
not sure why you describe your back as complicated for surgery...but i do believe that the really excellent surgeons, most listed on SRS, are quite capable of handling anything...including the unexpected...like surprise bleeders, collapsing lungs, etc...i think "complex" scoli problems are their specialty, and pretty common for them...though it always impresses me!

i have all the stuff that seems to go with scoli lately...degen disc disease, rotation, stenosis, arthritis, listhesis, hypokyphosis, etc etc...but never give it a second thought when it comes to the top surgeons...it is "all in a day's work" for them, i think...:)

hope you find the right doctor for you...

jess

rohrer01
06-25-2010, 09:27 PM
Amanda,

I'm concerned that you are running yourself ragged with all of these doctors and appointments. In my opinion, being that I am considering surgery myself, I think that it is fear that is driving you. I would recommend that you sit down and figure out which doctors would be feasable for you ahead of time. The ones that aren't I would just cross off my list for visiting all together. You are going to drive yourself INSANE doing what you are doing. There are many, many very skilled SRS docs out there. You don't have to see them all. Besides, if you have to have your surgery by mid-Feb, then you are running out of time to get on the surgical calendar. You need to choose your surgeon. Albeit, it is a very weighty matter, as I am seeing for myself. Please don't let fear ruin your chances of getting your surgery in a reasonable time, if that is what you desire, so as not to have to bankrupt yourself. ((((HUGS))))

Rohrer01