Newbie - meeting with surgeon this week!

[KathK]

Hi Peg,

I live in the Columbus, Ohio area. I would be happy to talk with you further about my scoliosis "journey". I traveled to St. Louis to have my surgery with Dr. Lenke at Barnes Jewish Hospital. I agree with the others who have said that you need to find a surgeon who is quite experienced with adult spinal deformity surgeries.

I am very pleased with my surgical outcome. I had a 5 day, 4 night stay on the orthopedic floor at Barnes (no ICU for me). I then moved to a hotel that is attached to the hospital via an elevated walkway. I had no complications. My hubby drove me home over 2 days, spending a night in Indy. It wasn't pleasant or comfortable, but it was doable. I flew back to St. Louis for 4 follow-up visits (at 3 mo, 6 mo, 1 year, and 2 years). I have always been able to find cheap airfare.

Again, I'd be happy to speak with you or to meet with you. Please send me a PM through the site and I will share my email with you.
Sincerely,
Kathy

[susancook]

Bottom line: you do what you need to do to get the quality of care that you need. Gardenia flew from Baja Mexico to St. Louis for care. You only want to have surgery once, if possible.

To be an SRS member, I believe that 50% of the surgeon's cases need to be spinal surgery. I would like to add that it would be also important that many of those surgeries are larger spinal fusions. There are surgeons who do just one and two level repairs. If that is what you need, then that surgeon might be appropriate for you. Getting at least 2 opinions from well qualified surgeons would give you the info that you need that you are on the right track.

Good luck! Susan

[PeggyS]

Result of consultation

I saw my columbus surgeon yesterday. He said I need to heal for 6-12 months before my back surgery. He ordered multiple X-rays & the good news was that he didn't find additional damage from the motorcycle accident.

I asked about his experience. He said all of his surgeries involve rods & screws, but he does 10-25 major revisions per year. He said he's not the best in the field, but 1 of the best in columbus ( he was recommended by 3 other doctors). He said his skills are adequate for my surgery & if they weren't, he'd send me elsewhere. Yikes - I don't like the word adequate!
T8 through L5 would be fused, probably without involving the pelvis. (He said the pelvis could be done later, if needed)

I need to get my husband 'on board' for traveling - probably to St. Louis. My husband thought this dr sounded 'fine'!
Peg

[leahdragonfly]

Hi Peggy,

There's absolutely no way I would go into this surgery with a doctor who says he's "not the best but is adequate". How scary!! You do not want to end up with saggital imbalance as others here have, especially from inexperienced surgeons.

I would also want to have a solid discussion about leaving L5-S1 unfused, and how long he thinks it would hold up. It's not really such a simple thing to just add on to the fusion to sacrum later.

It sounds like you have plenty of time to travel for another opinion, someone who does big scoliosis surgeries regularly.

[susancook]

Adequate....not the best in his field....time to run away!
Susan

[mabeckoff]

You need to find another doctor.. Someone who is the best in the field. If you need to travel, then you need to travel.
I can say that from personal experience . When I was living in NC I used a doctor who claimed that he was one of the best in the area. I really did not check him out. I did not know of this forum. He really did not have the experience to fix my back. He messed my back up very badly. When I moved to CA I was directed to Dr Bederman , thanks to Linda Racine. Due to my NC surgeon, my first CA surgery was 15 hours long. I have had other surgeries that Dr Bederman had to fix my NC surgeon's mistakes.

So ,please, do not use a surgeon that is not tops in the field. You do not want to have a surgeon work on your back unless he really knows what he is doing.

Melissa

[djkinkead]

Just want to reinforce what others have been saying about using a surgeon who is not one of the best. I have a friend who had a similar surgery done by a "not one of the best" and after his surgery, he is in constant pain and is using pain packs. You have a long life ahead of you and the quality of that life will come down to the quality of surgeon you select.

Best wishes to you!

Dollie,
2 years post surgery

[Doreen1]

Spinal fusion surgery is not like getting a broken nose fixed where all big cities have many experts to choose from. You definitely don't want to settle.

[jrnyc]

hi Peggy
i agree with all who have written to tell you this surgeon is not enough...
"adequate" and "fine" might be OK for treating the common cold...or a sore
throat...
but this is major spinal surgery...
the same way those adjectives wouldn't be reassuring to you if you were
choosing a surgeon for open heart surgery...or surgery for cancer...it
should not be good enough for you for spinal surgery...
this surgery is forever...once the bones are fused, they cannot be
unfused....
and if there is a chance you will need fusion to the pelvis, i do not
understand why this surgeon would not want to do that with this
surgery...rather than guaranteeing another fusion in the near future.

i strongly suggest you do NOT choose this surgeon...
i would urge you to choose a surgeon from the SRS list that is on
this National Scoliosis Foundation website. under "Resources"
and if you have to travel, it will be do-able...
why guarantee you will need a revision surgery right from the beginning...?
personally, i would now want to see two more surgeons...to see if they
agree on a need for fusion to the pelvis..

"fine" is no where close to being good enough for a major life changing
operation...

best of luck..
jess

[PeggyS]

Thank you!

I really appreciate all the support I'm receiving from this forum. Those 'words' did not sit well with me. I am glad Dr. Snook was able to give me an honest & frank assessment of his skills - I think that's kind of rare.

I don't want to take chances on this major surgery!

I'll be pursuing a 2nd opinion, as soon as my husband & I feel up to traveling. I'll probably see Dr. Lenke. I need to be calling my health ins. company.

Peg

[Doodles]

Peggy--
So glad you are getting a second opinion. I agree totally with all of the other responders! You need someone who does a few of these weekly--not 10-25 a year. His comments were just scary!! Janet

[jrnyc]

Peggy...
wise decision...

i think there is a wait to get into see Lenke for a consult...and it
always used to be said that Lenke only operates on the "very worst"
cases...not that i think your situation is any picnic...
you might want to put a few other names on your list of surgeons
to go talk to..

good luck..
jess

[golfnut]

My surgery with Dr. Lenke was in January of 2011. My surgery was definitely not one of his most difficult and he accepted me, but maybe his criteria has changed recently. Even though it is inconvenient and more expensive to travel, definitely go to the best, whomever you choose, and make this a one time surgery. I am happy that I was fused to the sacrum. Do it once, recover, and hopefully, never have another surgery. At least, we all hope that is our scenario.

[Irina]

Peggy,

Run! I don't want to repeat what everyone else have said, just reinforce it one more time. And Gayle is right about stopping at L5. My L5 was somewhat in a grey area and my surgeon told me that she can fuse me to either L5 or sacrum. Fusing to L5 would have left me with a bit more flexibility, but she said that I WILL be back for a revision in 5-10 years tops to extend the fusion to the sacrum. When I heard that, I told her that I only want to have this surgery once and please fuse me to the sacrum. So, think hard and long about stopping at L5 and ask your second opinion how long will it last.