Questions to be sure to ask surgeons at consults

[Snoopy]

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.

Yeah, but the football team is awesome!

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]

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]

Memo to self - delete later!!

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]

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! ).

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! 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 ).

[Back-out]

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!

[jrnyc]

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]

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