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PeggyS
08-04-2013, 03:39 PM
Hi All!

I've been lurking on this forum for a few months, now. The information is extremely helpful!

I finally decided I'd schedule my surgery for this October. I'm 59 years old with a 65 degree curve ( I'll ask for particulars at my appt. this week). I've had 2 opinions & the doctors have been recommending rods since 2005, due to continuous progression. This forum helped me go into the idea of surgery with my eyes open a little wider & I've felt a little more at peace about my decision - up until 2 weeks ago.

My husband & were in a motorcycle accident in mid July. we were in the desert, north of Reno, Nevada and we both flew off the bike. He has 1 broken rib with torn muscles. I have 6 broken ribs & a fractured shoulder blade. We're blessed to be alive!

After dealing with these injuries, I'm not sure if I'm mentally or physically prepared for major back surgery in October. What do you think? I'm thinking, my body might need more time to heal from this trauma before dealing with another one. I'll see what the surgeon has to say on Wednesday. I know he didn't want me to delay as long as I already have!

Is anyone from the columbus, Ohio area? Is anyone familiar with Dr. Derek Snook?

Thanks! Peg

LindaRacine
08-04-2013, 08:54 PM
Hi Peg...

There's really no hurry, and I think waiting until you've recovered is probably a good idea.

I don't know Dr. Snook, but I did look him up. I'm a little concerned that his fellowships didn't really include any complex spine training. It appears that he does more trauma than deformity. They're really very different specalities. Unfortunately, Ohio doesn't exactly have a plethora of experienced adult scoliosis surgeons. I looked up all Ohio members listed in the Scoliosis Research Society 2012 directory. The only surgeon who treats adults and who has done an appropriate fellowship is Jeffery Stambough in Cincinnati. I hate undermining peoples faith in their doctors, but for this surgery, you really want to choose someone who does a lot of this type of surgery. You can find Dr. Stambough here:

http://www.tristateorthotc.com/doctors/jeffery-l-stambough-m-d-.html

Hope I haven't stressed you out more than you already were!

Regards,
Linda

JenniferG
08-04-2013, 11:14 PM
Hi Peg,

I agree with Linda about waiting because there's no panic to have your surgery in October unless you're in real pain due to the scoliosis.

Aside from that, I agree that your choice of surgeon is the single most important part of your decision. Find the very best you can, and if possible, speak to other patients who've had surgery with him. Most surgeons will happily pass on names of previous patients. Ask him how many surgeries he's performed, of the kind that you require. If he's not doing deformity surgery on a regular basis (at least fortnightly to monthly) I would be looking elsewhere.

My surgeon was doing scoliosis surgery 2-3 times a week and had been for years before he did mine. I believe it was the major factor in my successful surgery. Experience and skills.

Hope you are feeling better really soon and can then get on with dealing with your scoliosis. Sounds like you've got plenty of living to do.

Confusedmom
08-04-2013, 11:43 PM
I'm originally from Ohio. Don't know your doc, but just thought I'd mention there are a few good ones in Louisville, which isn't too far from you. Steven Glassman at Norton Leatherman is one. It's worth traveling to Cinci, Louisville, Chicago or St. Louis for this surgery!

Doodles
08-05-2013, 12:37 PM
Peg--
Welcome to the forum. I totally agree with all above. First, get yourself properly healed and in great shape. While that's happening do your research for a specialist. My doctor also had done at least 3 a week for several years. This is not a surgery that can be done by someone who isn't very talented in scoliosis surgery for adults.
I saw your thread about traveling for surgery. I did travel to St. Louis about a 7+ hour trip for us. I stayed a week in the hospital and another week in rehab in St. Louis. We drove home but only did about 3+ hours and stayed over half way. I was well-medicated for the trip and put the seat almost flat with lots of pillows. You need to stop every 1 1/2 hour or so to walk around too. It wasn't fun but it was worth seeing Dr. Lenke--a very skilled surgeon. You don't want to have to go through with the whole thing twice if you don't have to! Get a good one first time! Janet

PeggyS
08-05-2013, 02:20 PM
I've noticed some surgeons are mentioned over & over in the forums. I may need to reconsider . . . I'm compiling lots of ?? for my dr. visit on wed. Thanks for the advice!

PeggyS
08-05-2013, 02:23 PM
Peg--
Welcome to the forum. I totally agree with all above. First, get yourself properly healed and in great shape. While that's happening do your research for a specialist. My doctor also had done at least 3 a week for several years. This is not a surgery that can be done by someone who isn't very talented in scoliosis surgery for adults.
I saw your thread about traveling for surgery. I did travel to St. Louis about a 7+ hour trip for us. I stayed a week in the hospital and another week in rehab in St. Louis. We drove home but only did about 3+ hours and stayed over half way. I was well-medicated for the trip and put the seat almost flat with lots of pillows. You need to stop every 1 1/2 hour or so to walk around too. It wasn't fun but it was worth seeing Dr. Lenke--a very skilled surgeon. You don't want to have to go through with the whole thing twice if you don't have to! Get a good one first time! Janet

Janet,
How many times did you go to St. Louis? I'm guessing once or twice pre-surgery & twice post-surgery, as a minimum? Thanks.
Peg

jackieg412
08-05-2013, 06:57 PM
Hi PeggyS,
Welcome. You will find great information here. It helped me in many areas that the doctors couldn't.
I agree with all--you need to be healed and strong for this type of surgery. It alone takes a huge toll on your body. Most of the people here will tell you it takes at least a year --starting out healthy. Since you have recent other injuries you may want to postpone this surgery until they are healed. As you recover from scoliosis surgery--you need other body parts to help you move. And hopfully they don't hurt as well. You will move in ways you never thought you would have to.
Get better first. There is always more time to do this surgery. Also everyone here will tell you you must do a lot of walking after this surgery--so pick a time of the year that you can be outside.

Doodles
08-05-2013, 10:06 PM
Peggy--
I believe I went just twice before surgery. I had had numerous tests done in my hometown and some for another doctor (chickened out on first surgery planned with different doctor! Just felt I was moving too fast and wasn't totally comfortable with him.) After surgery I've been back about a total of 4 times in 4 years. Twice in first year I believe. I'm not actually sure. My 6 months was with a local doctor who had studied with Dr. Lenke. Janet

susancook
08-06-2013, 02:20 AM
Great advice above:
My 2 cents:
- Travel if you need to, to have a well trained, experienced spinal deformity specialist
- Wait to have surgery until you are 100% sure, surgery cannot be reversed;
- Have total trust in your doctor

Good luck!
Susan

PeggyS
08-06-2013, 10:15 AM
Thank you all for your responses! I have a lot to think about. I'm going to be revising my list of ??? for tomorrow's appt.
peg

LindaRacine
08-06-2013, 11:31 AM
Janet,
How many times did you go to St. Louis? I'm guessing once or twice pre-surgery & twice post-surgery, as a minimum? Thanks.
Peg

The standard of care is 2 preop appointments, and postop at 6 weeks, 3 months, 6 months, 1 year, and 2 years. The Wash U surgeons try to sign up most of their patients in one of their long-term studies, and if you consent, they'll really push you to come back for all of those appointments as well as potentially 5 years, 10 years, etc.

--Linda

Doreen1
08-06-2013, 01:59 PM
Be sure you don't settle for a less experienced surgeon close to home... you don't want to be someone's guinea pig.

golfnut
08-06-2013, 08:52 PM
Peg,
Welcome to the forum. I can only repeat what everyone else has said. Let your body heal, however, you can still meet with your surgeon and set up the surgery, which in my case was 13 months later. I had a few opportunities before that but I had conflicts and chose to wait. I can't stress how important to the success of your surgery is choosing the best scoliosis surgeon possible, regardless of the travel involved.

mabeckoff
08-06-2013, 09:17 PM
Welcome to the forum. I can only say which others have said. Find yourself a great surgeon that you trust. You need both in a surgeon . Both skill and trust.

Melissa

KathK
08-07-2013, 04:18 PM
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
08-08-2013, 02:12 PM
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
08-08-2013, 06:48 PM
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
08-08-2013, 07:32 PM
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
08-08-2013, 07:36 PM
Adequate....not the best in his field....time to run away!
Susan

mabeckoff
08-08-2013, 08:07 PM
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
08-09-2013, 06:36 AM
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
08-09-2013, 03:03 PM
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
08-10-2013, 12:10 AM
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
08-10-2013, 06:05 AM
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
08-10-2013, 01:57 PM
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
08-10-2013, 09:51 PM
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
08-14-2013, 09:12 PM
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
08-14-2013, 11:22 PM
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.