How far have you traveled to have your surgery?

[PeggyS]

Columbus, OH doesn't seem to have well-known adult scoliosis surgeons. I'm wondering how far some people have traveled and how did the logistics work out? Did you stay in rehab in the same location as surgery? How did you tolerate the trip home? How frequent are follow up appointments? Thanks!
Peg

[Christyne]

I did have surgery in Columbus...

Hi Peggy,

I had surgery in Columbus on May 9 of this year. I had Harrington rods from 25 years ago however those weren't the problem. I have an S curve and the bottom curve had been progressing unbeknownst to me (I hadn't been measured since I was 20). Lo and behold it had increased almost 20 degrees in that time frame (I am now 42).

Anyway, my dr. put in titanium rods fusing T11-S1. However, due to the Harrington Rods being stainless steel and the new ones titanium, he had to cut part of the old HR's and remove them so the new rods wouldn't touch the old and produce a current.

11 1/2 hours later I was out of surgery. Now, I did suffer major complications of which I am having another surgery on September 5 to correct but it has nothing to do with the dr. and the surgery. I have ended up with a hunched back, tighter than all get-out hamstrings, shoulders scrunched forward, lost all of my "girls" of which I happened to have liked and most of all, it left me with a lump on my back. The top of my new rods is poking and making a lump (I've been assured it won't poke through my skin) because of course the rods don't bend where I am hunching over my shoulders. To give you an idea, I literally look like a little old lady when I walk. It has totally diminished my self-esteem and now I have none.

Anyway, I guess what I wanted to say is maybe Columbus doesn't have world-renowned doctors but they do have spinal fusion doctors and they've got one heck of a good reputation as well.

I'm not trying to be defensive or come across that way but I guess if you feel comfortable with the doctor as I did because I did my research on him. I pretty much know his routine and I know his staff on a more personal level, it feels. They have always been as though they care, and I genuinely believe they do, and therefore want to be good at what they do and I believe they are. Are they the best in the world? Probably not but again, they're good enough for me.


Oh and as far as where in relation to Columbus, I am 1 1/2 hours south; not bad I don't think. I had my mom drive me to our house where my husband and son were. I stopped there to see our son, my cat and of course use the bathroom. Then my husband drove me to Galliapolis for 10 days of rehab at Holzer. I absolutely loved them as well. I will tell you I did have a "not nice" night nurse the last week I was there (btw, I never left ICU for more than 8 hours my whole stay) who decided it was totally appropriate to come into my room in the middle of the night, flip on the light switch to work on his computer notes and then wonders why I wake up, can't get back to sleep, start to be in pain (again), and have to ask for another pain pill. Yeah, I didn't like him so well but all of the others were great!

You can always send me a pm and I'd be happy to give you any information on who my doctor is.

Sincerely,
Christyne

[jrnyc]

i am so sorry to read that you need another surgery..
if i may ask...
what DID cause the complication...? did they figure it out?

i hope the next surgery goes smoothly and it is the last one you need...

jess...and Sparky

[susancook]

Hi! I traveled 13 hours [that's without stops] for my surgery. I chose to go w/ my second opinion MD as she totally inspired me and I could trust her w/ my life. There is an excellent spinal surgeon about 1 hour from my house [my first opinion], but I was constantly having challenges getting messages and questions to him through his PA.

I had a 2 day surgery and was in the hospital for 9 days, then in rehab for 7 days. I went to my son's family's home for a month and saw my surgeon for the 6 week checkup, then we drove back home in 2 days. I bought a 6" comfy mattress from Costco, put it in the back of the Highlander, took my drugs and I did just fine.

I have chosen to go back to San Francisco for all of my follow-ups, but was told that I could get some xrays locally and send them to her. Surgeons vary of what they want, but most are flexible if you live a distance.

Do what you need to do to get the best care that you can on your insurance. Some people on the forum flew home, so read what they had to say. I remember at least one woman who said that it was miserable.

Good luck!
Susan

[Christyne]

Jess & Sparky

Unfortunately, no he really didn't say what caused it. Honestly, at this point, I don't give a rats behind what caused it, I just want it fixed. It's painful. YUCK!!!

Thank you for the kind words and encouragement, I so appreciate it.

Thanks again,
Christyne

[Doreen1]

Hi Peg,

Traveled from Atlanta to St. Louis where Dr. Lenke did my surgery. Drove both ways, no rehab, stay in hospital 6 days, then stayed in campus housing, The Lodge, at Washington University which is where Barnes Jewish Hospital is located for 5 days. We wanted access to a kitchen which a hotel room couldn't provide, which is why we opted for The Lodge. Flew back for 2 follow ups since 2011 and will fly back late this year or early next year for my 2 year follow up. I don't remember the trip home because of the heavy meds I was on. Dr. Lenke only allowed 4 hours per day driving back home and said for us to stop every hour so I could get out and walk. Day 1 heading home we stayed in Clarksville, TN which was the halfway point to home and also 4 hours from St. Louis. Day 2 arrived home after another 4 hour drive.

Flights are pretty inexpensive from ATL to STL.

Columbus, OH doesn't seem to have well-known adult scoliosis surgeons. I'm wondering how far some people have traveled and how did the logistics work out? Did you stay in rehab in the same location as surgery? How did you tolerate the trip home? How frequent are follow up appointments? Thanks!
Peg

[Confusedmom]

Drove 4 hours to St. Louis.

[babyboomer16]

Hi, Drove 13hrs. to have surgery from Dr. Lenke in St. Louis, Mo. It is a long trip and we have driven it
around six times for initial appt. plus surgery,follow ups, emergency appt., another revision surgery and follow up, it was all worth it! We do live in central So. Dak. And we break the trip up by staying one night in Lawrence Ks. with my son and his wife. I was only in the hospital five days for both surgeries. I fell and broke a rod causing the revision surgery. So far ~~so good! Linda



K

[PeggyS]

Downsides of traveling

Aside from the obvious: being away from local friends & family, distance from dr if/when questions arise after going home, expenses . . . What are other down sides I need to be aware of as far as logistics go? I just want to have my eyes wide open!
Peg

[hasteffen]

travel

Hi, Peg. I am from North Carolina and had surgery with Dr. Lenke in St. Louis. I am so glad that I traveled to have him do my surgery. My results have been exceptional.
Travel expenses included hotel stay, airfare, food.
I stayed in the hotel a week after being released from the hospital. I remember almost none of it. Bits and pieces but nothing of importance! As far as my plane trip home... I did fine, I guess, since I don't remember even getting on the plane. It was the first and only time I have flown first class and I don't even remember it!
As far as missing friends and family.... don't even remember missing them!
I feel like it was a huge blessing (not remembering), looking back. I don't think I could handle missing friends and the travel if I had been able to been aware of everything that was happening.
I can tell you that the first month after surgery was rough... probably 100 times worse then you can imagine... BUT now that I am 10 months post op I can say it was worth it.
IMHO, if you can afford the extra expense (and even if you can't...I would find a way) it is well worth it to travel to an expert. I really worried about flying and the 1.5 hour ride home after the flight before my surgery but really it is something you don't need to waste your time thinking about.
Somewhere on here is my blog...search for Heidi and Dr. Lenke I wrote about all the things I did to prepare and for a short time after.

to all other friends, I'm sorry I haven't kept up with you... I have been busy!!!
Best,
Heidi

[PeggyS]

Thanks

Heidi, Thank you for addressing my concerns.

Im trying to get an appt. with Dr. Lenke, but so far, I've only made it through registration. I didn't consider flying. St. Louis is about 420 miles from Columbus. No rehab.? I'll search for your posts - I'm sure they'll be helpful.

Were there any issues during the first couple of months when you wished you lived closer to your surgeon for evaluation of those issues? Were Dr. Lenke's nurses able to answer questions by phone for you? As you can tell, I'm a little nervous about not having medical support nearby. I'm MORE nervous about using a local surgeon who says his skills are "adequate" for my the spinal surgery!

I had planned to have surgery in Columbus this fall, but I've had a set back from a motorcycle accident. I need to heal from that before I can go ahead with my spine. Maybe it's a blessing, so I have more to to research and communicate with people on this forum. I keep telling God, I didn't need to practice healing before surgery! My husband & I are blessed to be alive and we thank Him everyday!

I've been reading about dr. Hey in NC. Did you consider him? You can send me a PM.
Thank you!
Peg

[mabeckoff]

I've been reading about dr. Hey in NC. Did you consider him? You can send me a PM.
Thank you!
Peg

Hi Peggy,

Before I moved to CA, I lived in NC. My CA surgeon, Dr Bederman, wanted me to have a another opinion about what was going to be the best way to do my surgery. My NC surgeon, not Dr Hey, messed me up very badly and Dr Bederman was going to have to fix the problems I had. I went to see Dr Hey. If I was not moving to CA, I would have had Dr Hey do my next surgery. He was wonderful. He spent over 90 minutes with me , even knowing that I was not going to have my surgery with him. He answered all of my questions , making sure that I understood his answers. He is a Christian and I only state that , knowing that you are as well. He will pray with you before surgery, if you want him to

God bless
Melissa

[jane d]

Surgery with Dr. Lenke

Hi, Peggy.
I had surgery last summer with Dr. Lenke on July 23, 2012. I live in South Carolina. I was fused from T-4 to

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sacrum at age 67 and have had a remarkable recovery. I am now walking over 3 miles a day now. Flying home after surgery was no problem. I was off pain meds at 5 1/2 weeks. I flew back at 6 weeks for a checkup and see him next week for my one year check. Any questions I've had his nurses were able to answer. I have a local neurosurgeon who agreed to see me if I had any problems but I haven't needed his help. I had no rehab after surgery. One week in hospital after surgery and five more days in hotel next to hospital and then flew home. I did do 3 years plus of strength training before my surgery and that was a big help. I saw several surgeons before deciding on Dr. Lenke and am so glad he did my surgery.
Best wishes and prayers for you.
Jane

[jane d]

Having problem with server. It logged me off and don't know how those ads appeared in the middle of my post! I'm sorry!
Jane

[gardenia]

Find the most experienced one

We live 100 miles south of the eastern border of Southern California and Baja California, Mexico. (peninsula)

To get to St Louis it took us 4 plane changes and umpteen hours. Found that Dr K Bridwell was in the top 10 scoliosis surgeons at the Washington Univ. out of St Louis. He actually trained Dr Lenke and they are pretty much in collaboration but with separate offices and different practices. My daughter is a PhD candidate at WashU and tells me that unlike UCSF in SanFrancisco, at Wash Univ the departments meet often and the collaboration is a very strong network.

What I am trying to say or assume is that the doctors consult with each other about their problematic cases.

Also in choosing a surgeon, you want someone that has long years of experience by operating on a frequent basis in this case Bridwell and Lenke does weekly surgeries for decades. Any small problem can be anticipated and promptly fixed. In my case, there was a neurosurgeon as part of the team because a dural tear was anticipated. The team that works with Dr Bridwell is the same and know the drill.

Although the first couple of visits were extremely frustrated I stuck with his practice because he was the best trained "mechanic, plumber, electrician' in the trade. Don't expect him to be sweet talking and asking about your mental health and happiness in life. He was more interested in my xrays than me as a person. That pleased me.

FIX ME!!! FIX MY PAIN!!!! and he did ....

Recovery: 9-10 days at the hospital because of the dural tear. We opted to spend 2 months renting an apt across the street at $3k/month just in case. Therapy came to the room - rehab and occupational which amounted to not much but it was enough.