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Back-out
06-15-2010, 10:55 PM
It's late and I'm tired. How about I give everyone a break, and not write a long megilllah with thread intro?

I'm wondering about everything, of course (as usual) - # visits and alternative surgeons, why you rejected the one(s) you did, how much distance factored in, your "druthers" if practical matters (like - oh, money/insurance :p) hadn't existed, etc.

How long did it take you to know you'd found "Dr. Right"? (Sheesh, this iS sounding a bit like a latter day fairy tale, considering that most patients are female and - so far as I know - ALL scoli surgeons are men!).

I'm extra (but NOT only!) interested in the thinking of older patients like me. That's because, it IS seeming that we have more medical issues to contend with and that therefore, a match with a surgeon who may be more experienced with "adult" scoliosis (e.g., degenerative conditions etc) is important.

Interested in everyone's stories including whether or not anyone regrets his/her choice and why (er, happy endings welcome too!! :o). It is seeming to me that the only factor in this adventure I can control for is choice of surgeon. However, sometimes I wonder if this is as important as I feel or if I am only belaboring it because of anxiety about all the many, many unknowables.

Your thoughts and experiences
gratefully awaited,

Amanda

foofer
06-15-2010, 11:03 PM
Glad you asked this question, Amanda...

I am wondering too, even though plenty of people have documented their final days of surgeon shopping. I'm in the market and yet still unclear about surgery. I've actually put the whole thing on ice lately.

Everyone?

Confusedmom
06-15-2010, 11:08 PM
Hi Amanda,

Your PM inbox is full and not accepting more messages. Thought you would want to know!

On this question, though, I'm still deciding. But a big factor for me is going to be the number of scoliosis cases they do per year. Other factors are how far I want to travel and what type of surgery they recommend.

Evelyn

Back-out
06-16-2010, 02:31 AM
Hi Amanda,
On this question, though, I'm still deciding. But a big factor for me is going to be the number of scoliosis cases they do per year. Other factors are how far I want to travel and what type of surgery they recommend.

Evelyn
Me too, all the way down except that to the extent possible, I'm wanting someone who works (successfully) on an older demographic so he's familiar with the more complex issues that go with aging. I wonder if the best for that aren't right where Linda is. If practice makes perfect, they must have worked on more older women relative to their whole patient load.

Linda, Linda-a-a, what do you think? Honestly, which surgeon (s) nationwide do you believe are the most experienced/best at doing deformity surgery on older women? Do you think there is much difference in the expertise used in operating on (otherwise healthy) early to mid sixties patients compared to those in the older demographic you mentioned, in their 70s or 80s?

And who at your facility is the most experienced/best at either population (separating the age groups?) Does he/they accept Blue Cross? For that matter, does UCSF accept Blue Cross/Blue Shield?

Should have been a PM, but I'm derailing my own thread. Will try to get it back on track tomorrow if I have time to post. :o I really hope to get insight into the decision making process of others, especially as they look back. My own mother says it's "ridiculous" to interview more than a few surgeons. For some reason, this bothers me immensely. :mad:

JenniferG
06-16-2010, 02:50 AM
Hi Amanda,

In this respect, I feel lucky that the first surgeon I went to (who my GP referred me to) turned out to be THE ONE. He was matter of fact, didn't mince words, answered all my questions in plain English, does several scoliosis surgeries every week, both mature-aged and teens and he generally made sense to me. He didn't say I must have surgery, in fact he said my scoliosis would never kill me. He said he could do the surgery in another ten years but by that time I'd likely be in real pain and badly twisted. He recommended it be done within 12 months. It all made sense. I could see the way I was going. So I made the decision pretty much straight away, it was just a matter of when. I cancelled the first date, (just wasn't ready), but by the time the second date came round, I was.

Snoopy
06-16-2010, 06:14 AM
Hi Amanda,

I know you are mostly looking for responses from adults, but since I took my daughter to FIVE (5) doctors and also the fact that Jamie has some possible underlying causes (CMT or NF) of her Kyphoscoliosis, I thought I'd reply.

Three of the five doctors we saw were at HMC (all pediactric surgeons), one was in Philly (pediatric) and one was a local adults surgeon. All were very qualified surgeons with great reputations. 1st doctor was not very understanding, talked to me as though Jamie wasn't in the room, did not want to be flexible at all with removing Jamie's Milwaukee brace for gym class but the main reason we did not choose him was he'd never heard of CMT and that is possibly the cause of her Kyphoscoliosis! 2nd doctor was a woman, she didn't come across as professional to me. She decided to switch to a different brace which did not address the Kyphosis. (at diagnosis Kyphosis was 71* and Scoliosis was 36*) She told us the Kyphosis wasn't anything to be concerned about! YIKES! 3rd doctor was wonderful! Talked to Jamie and I together, very understanding and we loved him, especially Jamie! He told us the truth--he could treat her while braced, but he did not do this surgey on kids/teens. We respected his honesty but we moved on. He is however, her doctor now that she is older and her surgeon moved out of state. 4th doctor was AWESOME! Traveled to Philly which is about an hour away. We loved him, he spent a lot of time with us, never felt rushed which we always felt rushed with the first two. We left the hospital with Jamie's name on the waiting list for surgery which was about a year wait at that point with the understanding that we had a 5th opinion schedule back at HMC and if the last doctor wasn't the one for us, we'd wait and travel to Philly. In preparation for surgery he ordred an MRI and CT scans. 5th doctor's first words to us were "why are you here?" Jamie and I looked at each other thinking he's a quack, but when he continued, we feel in love. He said that he saw that Jamie was examined by doc #4, and we are in amazing hands with him, so why were we there to see him? Turns out doc #5 trained under doc #4 years ago. Doc #5 spent probably close to two hours with us, talked directly to Jamie and then turned to me and asked if I had any quetions, he was always very patient and understanding. He gave us a list of his patients who've had the same surgery and have volunteered to speak to us. We called all of them. If we had allowed doc #4 to do the surgery, we wouldn't have had to pay a penny as he was a doctor at a Shriner's hospital. That wasn't why we went to him--we went for his reputation and used our insurance to pay for the MRI and CT scans. We opted to let #5 do Jamie's surgery. In the weeks before surgery, I had a lot of questions, so I'd e-mail the surgeon before I forgot my questions expecting him to reply on Monday. He actually called me himself from the hospital on a Sunday to answer my questions himself and to re-assure me!

A lot has to go into your decision. Yes, they need to have experience with Scoliosis, have a great reputation, etc. but you also need to be completely comfortable with him/her and trust them 100%. Do your research and then trust yourself to have made the right decision.

Sorry this became so long. Hope it helps.

Mary Lou

Back-out
06-16-2010, 09:11 AM
Foofer and Confusedmom thanks for reinforcing my question and JenniferG and Snoopy for your very helpful answers. Snoopy, no such as thing as "too long" in my book - it just means someone cared enough to express themselves and try to help. That makes the content doubly valuable! :)

And very interesting to read of your search especially since you're relatively, I think, nearby. I can't imagine searching for a child. What an awesome responsibility! Hard to imagine a doctor spending that kind of time *sigh*
I like your idea about emailing questions.

BTW, all, actual names don't hurt! :D

rohrer01
06-16-2010, 10:35 AM
Amanda,

For some reason I was feeling guilty for wanting to meet several surgeons due to cost. I was feeling like I was looking for someone to "tickle my ears" and tell me just what I want to hear. Thanks to this thread, I no longer feel this way. I lost some faith in my doctor of five years at my last visit with him. I can't believe being told to look on the internet to diagnose myself! Isn't that what docs get paid for? I feel like after seeing him, that I wouldn't trust him with my spine even if he did want to operate. He wants me to wait until my very tight upper thoracic (spans only 6 vertebrae: T-1 to T-6) is over 60* to operate. I can only imagine how much pain I would be in if I wait that long! For a surgery of this magnitude, we really do need to put ourselves in the hands of someone we trust and feel at ease with. Thank you. :)

Back-out
06-16-2010, 11:41 AM
Amanda,

For some reason I was feeling guilty for wanting to meet several surgeons due to cost. I was feeling like I was looking for someone to "tickle my ears" and tell me just what I want to hear. Thanks to this thread, I no longer feel this way. I lost some faith in my doctor of five years at my last visit with him. I can't believe being told to look on the internet to diagnose myself! Isn't that what docs get paid for? I feel like after seeing him, that I wouldn't trust him with my spine even if he did want to operate. He wants me to wait until my very tight upper thoracic (spans only 6 vertebrae: T-1 to T-6) is over 60* to operate. I can only imagine how much pain I would be in if I wait that long! For a surgery of this magnitude, we really do need to put ourselves in the hands of someone we trust and feel at ease with. Thank you. :)
I'm so glad it helped you, rohrer!

Heh, I don't feel a bit guilty about seeing as many surgeons as I can ("can" referring to the difficulty I have traveling especially from this g-dforsaken area). Be it said, though that my current insurance plan allows me to see as many as I please - only through Feb when I hit - gasp - Medicare age. That will only let me have one second opinion AFAIK. :eek:

God forbid I need a revision under those conditions (or any. So, forbid it anyhow! ;))

As Teresa Greenthumb wrote in explaining why she was traveling to Dr. Lenke from Houston, expense and all (paraphrase) " I only have one life and the surgeon choice may determine its quality from here on out". To which I'll add, maybe whether one has a life at all!

I can hardly think of anything I'd regret more than trying to cut major corners on this surgery - within the realm of the possible, anyhow. Mothers especially need to think of their children too. Mine still need me. I have to show them that I'm doing my best to help myself! I already neglected myself too much - that's how I got in this mess.

As for your situation, I've been wondering why you were adamant abt sticking with your surgeon since it was seeming evident some time back that he was going through some kind of crisis (put generously). It was even independently validated by another member. I would NOT want someone unstable operating on me!

Good luck persevering in testing out other waters, hopefully less shark-infested. I expect you will be eligible for other insurance crossing state lines before long. The one good thing to come out of Obama's healthcare change (debacle) was the dropping of pre-existing conditions clauses!

FWIW I live far from "centers of excellence", and I might as well hop on a plane, I figure - pretty much. I might feel different if lived in a big city with more local choice. How I envy TXmarinemom who reports her surgeon was only a twenty minute drive away! If I could move, I certainly would.

Back-out
06-16-2010, 11:43 AM
And I certainly hope Teresa is OK. She was operated on, on the 10th! Guess she doesn't have an amenuensis! (Been longing to use that word! ;))

LynetteG
06-16-2010, 12:53 PM
When I first found out I had scoliosis about 12 years ago, I went to an older doctor - Dr. Clinton - I don't think he's still practicing - not sure. Anyway I only had a 41 degree lumbar curve and 25 degree thoracic curve, no pain, and I was only 32 years old. He told me how severe I was and that I should immediately have surgery, having anterior and posterior, broken rib, hip opened up to get bone from there etc.etc.etc., needless to say I left that office bawling my eyes out. I later found out that Dr. Clinton was knife happy, couldn't wait to get every single patient he saw under the knife. So I went for a second opinion - thank God I did.

I then saw Dr. Moreno, an outstanding scoliosis specialist, and back then he told me there was no need for surgery yet. I continued to see him over the last 12 years, then my insurance changed, and he could no longer work on me. He suggested Dr. Cronen he works alongside with on difficult cases, and he told me that he was the only doctor he'd allow to operate on his back too. So I went to see Dr. Cronen, and immediately I knew he was fantastic, he answered all my questions patiently and in understandable lingo. All his staff were also very friendly and knowledgable, I immediately booked my surgery for six weeks after my initial appointment and had my surgery. I've never looked back. Dr. Cronen did an outstanding job, and I'm pretty much pain free other than the healing process and aches and pains that are expected and nerves coming alive kind of pain that I get day to day. Nothing in comparison to what I felt prior to surgery. Now I can stand for long periods of time, walk for long periods of time, prior to surgery I couldn't do anything like that. I am ecstatic that I had this surgery, I love to see my new back in the mirror and my new waistline. My waist had dropped and I looked so deformed prior to surgery, so the confidence I have gained since surgery has literally turned my life round for the better. My whole life in every area has improved, whether it's due to confidence I don't know, but I feel like a worthy human being now, instead of a deformed weirdo. Just how I felt. Not everyone may feel this way, but that's how I felt. I will never look back, no matter what challenges I may have to face in the future, doing this surgery was vital for my health and well-being.

Good luck in your search for a good surgeon.

Amanda, I wouldn't spend too much time in your life worrying about every single thing, and not getting this surgery done, if you need the surgery, because if you leave it too long, you may find they can't help you as well as they could now. Just my thoughts.

All the best,

Lynette.

hdugger
06-16-2010, 01:54 PM
I'm somewhat stumped about how one can determine surgical skills through interviewing doctors. We only have a few scoliosis specialists up here (I think there are two SRS doctors on our insurance) and both are very intelligent, compassionate, and personable. I can clearly distinguish between surgeons of their caliber vs. our old scoliosis doctor (not a member of SRS).

But . . . what I *really* need to evaluate is their ability to reshape a spine, and I have no idea how I'd go about figuring that out. Yes, I'm sure both have satisfied patients, but what I really want to know is the likelihood that my son would be one of those satisfied patients.

If I were in a bigger city, I'd be able to read about patients who'd had surgery with them but, so far, only one patient on the forum has been to either one of them, and she was a very different case from my son.

So, how does one go about evaluating surgical skill for any surgeon other then the well-known few?

CHRIS WBS
06-16-2010, 02:22 PM
Great post, Lynette. I'm so happy for you. And great advice for Amanda.

JenniferG
06-16-2010, 03:22 PM
I'm somewhat stumped about how one can determine surgical skills through interviewing doctors. We only have a few scoliosis specialists up here (I think there are two SRS doctors on our insurance) and both are very intelligent, compassionate, and personable. I can clearly distinguish between surgeons of their caliber vs. our old scoliosis doctor (not a member of SRS).

But . . . what I *really* need to evaluate is their ability to reshape a spine, and I have no idea how I'd go about figuring that out. Yes, I'm sure both have satisfied patients, but what I really want to know is the likelihood that my son would be one of those satisfied patients.

If I were in a bigger city, I'd be able to read about patients who'd had surgery with them but, so far, only one patient on the forum has been to either one of them, and she was a very different case from my son.

So, how does one go about evaluating surgical skill for any surgeon other then the well-known few?

I also don't see how you can evaluate a surgeon's skills at a meeting. Seems impossible to me. However, you can get a good feeling about a person and then you ask questions. Talk to their previous patients (yes, they will the pick of his best outcomes, no doubt, but still worth talking to), and any other doctors you may know who could know about his work.

I was amazed at how many people knew of Dr. Askin and his work. I had never heard of him before our appt. but I received excellent reports about his work from various sources, including one from this forum. Another specialist I see for my Graves Disease praised his work. They were all correct. I couldn't be happier with my result.

Lynette - Great to read about your feelings about your surgery.

Snoopy
06-16-2010, 03:30 PM
BTW, all, actual names don't hurt! :D

Sorry, I've told Jamie's story so many times on this forum that most people know the names of the surgeons we've seen. For those of you who don't know: 1st-Dr. Herrara-Soto; 2nd -Dr. Vanderhave; 3rd-Dr. Peppelman; 4th-Dr. Betz and 5th-Dr. Segal.

Yes, we live relatively close to each other. ;) My family is fortunate to have the Penn State Milton S. Hershey Children's Hospital within 25 minutes of our house, but since we weren't finding the "perfect" doctor for Jamie, we were willing to travel wherever we needed to until we found the doctor for her. There was a lot of time and money involved in this search, but well worth it in the end.

You too, will find the right doctor for you. Don't give up.

By the way, Dr. Peppelman has done small spinal fusion surgeries on two of my adult friends within the past few years and they are both doing great! He would be a bit of a travel for you, but maybe worth contacting the office at least.

Mary Lou

loves to skate
06-16-2010, 03:44 PM
Amanda,

When you meet Dr. Right, you will know. He will answer all your questions, he will be very attentive to your entire medical condition and to you personally, and he will exude confidence. You can also do a background check on the internet to see if he has any lawsuits against him. That will cost about $30.00. Find one who works mainly on older patients and has lots of experience. If he has a long wait list, he is probably also very good and he won't try to talk you into surgery, because he has plenty of other patients. I was fortunate to find Dr. Rand and Boston is only a 30 - 60 minute drive from here depending on traffic. Dr. Rand was the only scoliosis specialist I saw after consulting with an arrogant Neurosurgeon before him. You are fortunate to have insurance to cover several consults.

Sally

jrnyc
06-16-2010, 06:13 PM
i think it is easy...reputations are formed for good reasons...many surgeons are recommended on this forum...then you go meet with a few of the surgeons...i met with several..one i didnt like...attitude was condescending...so i no longer cared about his skills...the doctor you feel most comfortable with, who answers your questions thoroughly...the one you feel confident with...pretty simple...i met with 5...felt the best with one in particular...if i do this, he will be my guy...

jess

hdugger
06-16-2010, 06:44 PM
The guys up here don't have a reputation. They could be wonderful - it's just that it's a smallish town (compared to New York or LA), so I'm unlikely to find anyone who has been through surgery.

So, what do you do if there *isn't* a reputation?

jrnyc
06-16-2010, 07:22 PM
hmmmm...that's hard...can you ask how many patients he has done the same surgery on? i dont know what it would be worth to talk to his patients...he wouldnt give you the names of dis satisfied patients...
tell you the truth, i might travel for the surgery if necessary...i would probably be nervous to have it done with an unknown...even though they might be really good...
also...where did they train...intern and residency? sometimes you can find a surgeon who trained with a well known scoli surgeon....

jess