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trulyaries
01-10-2011, 01:15 PM
I originally posted in the revision surgery section, since I am now heading for my fifth fusion surgery. But thanks to a suggestion from confused mom, I'm posting here because I have some questions about St. Louis and Dr. Lenke and I see there's quite a few of you here who have had surgery with him.

I have been on and off this forum since my first surgery in 2000. Long story short, I have had saggital imbalance since after my second surgery, it was not adequately fixed in the third and fourth surgeries, and has been getting progressively worse with extremely poor prognosis.

Last June I saw Dr. Lenke in St. Louis and I was SO impressed with him. I'm scheduled for two-stage surgery in March. I will be one week in hospital and one week in rehab. Any information you can give me about Dr. Lenke, his staff and the hospital that I should know? Did any of you do rehab there?

Having been through surgeries before, I kind of know what to expect there, but being out of town for the surgery for two weeks is what’s worrying me right now. I'm single, no children. The two people who have been my primary caregivers cannot go to St. Louis with me. I have a sister and a brother who may be able to be with me for part of the time. Neither one of them is a very experienced traveler (or caregiver) and I'm afraid they are going to be so overwhelmed.

My questions center around figuring out all the logistics. I want to organize the trip for my caregivers so I can concentrate on my surgery and not worry about them. I will probably have to spring for them to stay at the Parkway Hotel since neither of them wants to have to deal with a car there.

Here's the kinds of questions running through my mind .... Have any of you used Guest Services for any arrangements? Did you leave St. Louis the same day you were released or did you stay in a hotel overnight? I thought I saw somewhere that there were home care aides available. Anybody know about that? (My brother might be the one to bring me home but I"m concerned about any personal care I might need after discharge from the hospital and before I leave town.)

I will be flying home and would appreciate any tips about getting to/through the airport with me in a wheelchair, the luggage, and just general airport hassles.

My pre-op is next week and I’m allowing extra time to search everything out while I’m there. I would appreciate any tips or suggestions you may have. We can correspond on the forum or via private email if you prefer. Thanks for any advice you can offer.

P.S. Dr. Lenke is using me for a video tutorial because my case will be “interesting.” I figure he will be extra careful that way, no “oops” allowed on video!

KathK
01-10-2011, 01:33 PM
Hi Felicia,

I certainly hope that Dr. Lenke can fix your saggital imbalance issues. I'm sure he can!

What day is your pre-opt? I ask because I will be in his office on Jan 26th for a 6-month follow-up appointment. If you are there that same day, maybe we could meet and talk.

My caregivers, husband and parents, stayed at the Parkway for 2 weeks. My husband actually spent every night at the hosptal sleeping on a cot next to me, but he still had a room for napping and showers. I was at Barnes for 4 nights and 5 days (Monday-Friday). After that, I moved to the Parkway also. I spent 7 nights at the Parkway before heading for home in our car (2 days for 470 miles). I kinda wish I had flown home; it was a long drive. We were pleased with our stay at the Parkway; we found the staff to be very kind and accommodating. They are used to dealing with families who are dealing with medical issues.

I have flown two times since my surgery and would be happy to talk with you about my experiences with flying and with wheelchair assistance.

If you'd like to speak on the phone, send me a PM with your number. Maybe you can help me to understand those born under the Aries sign....my daugher's sign (smiles).

trulyaries
01-10-2011, 02:05 PM
Hi KathK -
Thanks for your response. Unfortunately, we are just going to miss each other. I will be in STL from the 17th to the 20th.

As far as drive/fly, Dr. Lenke recommended I fly because of the distance from Michigan. But having been through these surgeries 4 times already, there was no way I would be in a car for that long. I'm even dreading flying, even though the flight itself is only about an hour and a half. Can we say "exhaustion?"

Dr. Lenke is having me stay in rehab for a week after surgery, probably because he knows I live alone and therefore have to be able to take care of myself pretty quickly after surgery. I'm sure the seriousness of the revision surgery and my age (67) have a lot to do with it also.

I would love to speak with you by phone. I'll send you a private message. And I'll be happy to talk to you about your Aries daughter!! ;)

nanlo
01-10-2011, 07:15 PM
Hi Felicia,
I can give you a little info about how it went for me in St Louis - traveling from Michigan. My husband was with me - he didn't need to do much hands on care. By the time I was discharged, I could do all personal tasks on my own (using a walker). I needed him there for moral support, company, run errands, and mostly keep track of times for pain meds. (I was no use in the thinking department). I was in the hospital for 6 nights, and in the Parkway for 6 nights - as I had suspected, I was in no shape to travel home the day I was discharged. Since I could do the tasks required of me (PT and OT sign off), I didn't go to rehab. If you stay in the hotel after you're discharged, I think you will definitely need someone staying in the room w/ you - just to make sure you are steady, and again, to help keep track of the medication (very important!). Also, the hospital lent us a wheelchair, which we used for any outing further than a walk up and down the hall. Actually went out to eat, used the hospital salon, a follow up appt w/ Dr Lenke, etc.
Traveling home was pretty easy. The meds made that possible. We took a cab to the airport, greeted by a prearranged wheelchair escort. Patted down in security, went to the ladies' room w/ my walker. Had sprung for first class tickets home expecting to be very uncomfortable, but didn't really need it. Just had a cushy pillow w/ me at all times.
Trying to plan and anticipate the travel details was very stressful for me. I know what you're going through, not really knowing what kind of shape you'll be in, etc. I'd say if you're going to rehab for a week for sure, that will be a load off your mind, and you won't have to worry about your sister and brother being up to the task.
I didn't use any of the guest services. I know some people talk about hiring a private nurse to be at your bedside - maybe someone knows how to go about finding one or if insurance will cover anything like that...
Lots to think about! I'm excited for you - I bet Dr Lenke can fix you up. Is he going to pretty much redo all your prior surgeries? You're in good hands for sure.
Nancy

nanlo
01-10-2011, 07:26 PM
Hi Felicia,
I just want you to know that I responded to your p.m. - I haven't sent one before, so I hope it went through...
Nancy

LisaB
01-10-2011, 09:48 PM
I had surgery with Dr Bridwell-same office, hospital,etc. My surgery was Tuesday; released the following Monday; stayed at the Chase Park Plaza because my husband needed a little more room to work(they also have reduced rates for Barnes patients) from the room. I was at the hotel until the following Monday. Since you'll be gong to rehab you probably won't need to worry about a hotel after surgery. I did stay at the Parkway the 2 nights before my surgery. We drove home(Indianapolis) and stopped every hour so I could get out and walk around. We didn't fly because there are no nonstop flights between St Louis and Indianapolis, so by the time you go through Chicago or Kansas City, it's as fast as driving. I did fly for my 8 week followup. A friend went with me and the connection through KC was late on the way out and everything was late through Chicago going home. By 8 weeks I just used a walker, not a wheelchair. You do get to board early with a wheelchair/walker. I am driving over for my 6 month checkup however the end of Feb. My hospital stay was uneventful. My husband left the day after my surgery(Wed) and couldn't return until Sat. I was fine in the hospital by myself. Dr Bridwell came in every morning and the Fellow and lots of nurses to take care of you. I mostly slept if PT wasn't working with me. So being by myself wasn't an issue. My daughter came over on the weekend, but she's an anesthesiology resident and couldn't really take time off. I really think the hospital is good enough that you can do it by yourself. (Barnes is ranked 5th nationally for their orthopedic Dept) Send me a message if you have any questions.

trulyaries
01-11-2011, 08:42 AM
Lisa, thank you!
I'm still trying to decide whether I need to have someone there the whole time I'm in St. Louis. I'm normally an extremely independent person, but being out of town this way is causing a lot of anxiety for some reason. So I'm happy to hear that you were alone part of the time and it was no big deal.

The responses I'm getting here are helping me toward making some decisions - thanks!

LisaB
01-11-2011, 09:57 PM
Hey Felicia - good luck with your decisions; this forum is very helpful. Let me know if you have any more St Louis or Barnes questions.

JanL
01-15-2011, 10:48 AM
I had surgery with Dr Bridwell Dec '07. We flew from Asheville, NC on Sunday, for pre op procedures on Monday. My surgeries were done Tues & Thurs. My husband is not the caregiver type, can't sit still, so we arranged for him to stay just thru Sat, then a friend joined me until my d/c from hospital the next Weds. Went to the Parkway for another week - my brother came up to stay with me. I definitely needed him because I could not get out of bed by myself and seems I woke every couple of hours to go to the bathroom. He helped check my incision daily and put on compression stockings, etc, but I could do basic self care in the bathroom. We drove back, but took it very slow, spent 2 nights on the road.

The only glitch, or confusion came in the hospital discharge process. I wanted to contact guest services, nursing staff didn't seem to know the process. They wanted me to take a shuttle bus to the Parkway - how could I bounce around on a bus ? I wanted my friend to wheel me over in a borrowed wheelchair. In the end, the D/C planner wheeled me over to the hotel.

Good luck to you

trulyaries
01-16-2011, 03:37 PM
Gee whiz, Jan, you would think the nurses would know that a shuttle bus isn't what you want to do after surgery!! They must have come a long way since then; it was either Nancy or Kathy that told me the hospital let them borrow a wheelchair to get back to the hotel. Thanks for the info - I'm kind of narrowing in on a plan.

I'm off to STL in the morning for my pre-ops.

trulyaries
01-20-2011, 02:13 PM
Well, I'm back from my pre-op tests in St. Louis. I was going to stay one more day, but since they had a huge snowstorm heading their way, I paid the big bucks to change my return. Even though there was a long delay at the airport because of our plane coming from Minneapolis, I did finally get home at 2 in the morning. But that was still better than getting snowed in in STL - they got about 8 inches of snow overnight.

Everything went very well. I am so impressed with how efficient, professional and helpful everyone is, from the Parkway Hotel staff to the office staff and doctors to guest services to the various testing locations.

There were a couple of surprises - Dr. Lenke will be doing more than I expected, with the end result that I will be fused all the way from T1 to sacrum. Whew!! Also, they had told me I would go into rehab for a week, but now I am told that due to insurance requirements they won't know if I qualify until after the surgery. If I don't, then I need to stay in the hotel with a caregiver until they release me to go home. Well, I was planning on having a brother there during rehab and to bring me home. Now neither he nor I are comfortable with the hotel option, understandably.

I don't know what I'm going to do. Have to think about this one. There are times a husband would come in handy .....

mgs
01-20-2011, 03:38 PM
You were smart to get out while the getting was good. I read in the STL Post-Dispatch (on-line) that there were a few flight cancellations today, but it was not too bad at Lambert. But, you had to be able to get to the airport, and a lot of the city is pretty bad (unless your a kid, enjoying the snow day, then it's pretty good!).
I have no words of wisdom for a scoli surgery vet like you, but it might be a good idea to have your brother spend some time reading through posts on this forum. I think it'll be a big help in preparing him - or anyone's friend or family member who will be around us, freshly post-op. It's such a heavy duty surgery that I don't think most people, if they haven't been REALLY prepared for what life is in those first few weeks, have a reasonable picture of how it's going to be. If caregivers are expecting OUR post-ops to be along the lines of the gallbladder or hip replacement folks. . .I could see that they could freak. Whatever info they can walk into this as far as WHAT TO EXPECT, WHAT IS NORMAL could be invaluable to them too.

March 9 and 11. . .I am sooo looking forward to reading that you crossed this bridge, all is successful, and can put this saga behind you.

CamsMomKelly
01-20-2011, 10:41 PM
IM in Hazelwood Mo we got 11-12inches..you are lucky you got out, supposed to snow again tomorrow with about 2 more inches then Sunday into Monday we are hearing another 3-6 inches!!!! ugh. My son goes to Dr Bridwell Monday for his 4 month post op its going to take forever to get there...

trulyaries
01-21-2011, 11:12 AM
Yes, I was lucky and got out just in time. In fact, when I went to the airport nothing was happening weather-wise, but by the time we boarded a few hours later, the snow was coming down very hard. We had to de-ice before we took off and I was still afraid that they would cancel and turn around. I was very relieved when we finally took off!

Question: Has anyone hired a nurse, nurse's aide, home care worker or anything like that when they were in St. Louis? I'm looking at all kinds of alternatives for the maybe rehab/maybe not decision I'm facing.

Thanks.

golfnut
01-21-2011, 07:34 PM
Felicia,
I had my surgery with Dr. Lenke on Jan. 5th. I know there are other good surgeons, but I think he's right there at the top. I hope you can find someone to stay with you.
Karen

trulyaries
02-12-2011, 07:56 AM
I thought I should update you on my plans for my surgery in March with Dr. Lenke. I have talked to Kelly a few times and told her that I will not have anyone there to stay in a hotel with me. She seems to understand that we will have to make arrangements for me to go to rehab. She said, "well, we're not going to put you out on the street." My sister will be with me during surgery week and a few days after, but will be gone before I am released for rehab. Once I'm in rehab and have a release date, my brother will come back to escort me home.

My next door neighbor has agreed to be my paid caregiver when I get home, rather than my hiring a home health aide. I'm very happy about that, because she's right next door, she's a bright, cheerful person and she already knows things like where the mailbox is and when the trash has to go out! Between her and my family and friends, I think I'm covered for when I come home.

I have been crazy busy getting my house ready, shopping, and making plans to close down my online shops for awhile. Oh yes, and I have to figure out how to use my new Blackberry. Hopefully by the time I get to St. Louis I will know how to text!

Thanks to all for your tips, and especially to KathK and Nanlo. I actually met Nancy for lunch last week. She is a delightful person and one of the few adults I know who is shorter than I am! :D

golfnut
02-12-2011, 08:15 AM
Hi, Felicia,
You are going through the most difficult part of the whole process right now. Nancy told me she was meeting you. I've also become friends with KathyK through emails. I had surgery with Dr. Lenke on Jan. 5. The results are amazing. I've had very little pain and got off of the pain meds. after one month. I would recommend always using you're walker until you are completely off of the strong pain meds. I was only walking from the guest bedroom to the bathroom (without the walker) at 3 weeks post-op and got light headed and blacked out briefly and fell to the floor. It took me by surprise since I had not had any dizziness prior to the incident. Fortunately, my husband was right there ane helped break my fall. I was in the hospital one week and went home. I actually thought rehab. would be a good thing, but was told I didn't qualify. Dr. Lenke is amazing and you will do well. Best of luck. If you have any questions, email me at pottoff@htc.net
Karen

trulyaries
02-13-2011, 10:10 AM
Wow, Karen - you sound a little bit like Wonder Woman! Five weeks out, little pain, off pain meds?? Where do you live that you were able to go home after just one week? I assume your husband was with you the whole time. I'm curious as to what they pointed to as the determination that you didn't qualify for rehab. I'm just a little upset that during my evaluation last June and in several conversations with Kelly before my pre-op, nothing was said about the possibility of not qualifying for rehab. In fact, during my evaluation visit Dr. Lenke stated emphatically that I would go to rehab because I'm single. But all of a sudden during my pre-op visit this came up. I don't know if it would have changed my situation, but it would have helped to have more lead time to try to make arrangements. Makes me wonder if they are getting pressure from insurance or the rehab place or something ....

I truly wish I had someone to be with me the whole time but it's just not possible. I know I am going to be anxious to get home as soon as I can. This is the one thing in this whole process that is worrying me.

Any thoughts?

golfnut
02-13-2011, 10:31 AM
I wouldn't be surprised if insurance companies were puttting pressure on doctors concerning sending patients to rehab. I'm sure it's expensive. I think you might be more likely to qualify simply because you are single. It makes sense. I assume I didn't qualify because I could go up and down 3 steps and dress myself using the various aides. I walked quite steadily with my walker. I was told several times BEFORE my surgery that I would most likely get to go home after a week. I don't know how they assumed I would do fine.
My husband stayed in my room the first 2 nights and I paid a home care nurse to stay the 3rd night. I'm not sure that was worth the money. The other nights I was by myself. I remember using my nurse's call button because I vomited a small amount in my mouth and of course, couldn't talk without spitting it up or swallowing. Pretty disgusting! I forgot to mention that we live about 30 miles from Barnes Hospital, so if I had a problem, I could easily return if necessary.

trulyaries
02-13-2011, 04:45 PM
Thanks, Karen. I wish I lived that close - I'd be outa there as soon as they sprung me! Even though I have had back surgeries before, I just don't know how I'm going to be after this one. I hate having to "pretend" I can't do stuff just to get to rehab, but I don't see an alternative at this point.

I think it would be way too expensive for me to pay a home care nurse to stay in the hotel with me. Besides, I understand completely trying to control health care costs, but I'm paying for the insurance and should be able to use it instead of paying out of my pocket.

Funny you should mention the vomiting - I just spent the past 24 hours worshipping the porcelain god with a bout of the flu. I hardly ever get flu shots and can't remember the last time I had the flu. This year, I didn't want to take a chance on getting sick before the surgery so I got the flu shot. And I got the flu. Go figure!

Thanks for the info.

golfnut
02-13-2011, 05:17 PM
I just now read your "signature" and about all of your future back surgeries. Hopefully,with Dr. Lenke's experise, this will be your last. I only paid for the nurse one night, but it happened to be a night that I had plenty of others in and out of my room, so it was a waste of money. However, it allowed my husband to go home and not worry, so maybe it was worth it. Good luck!

trulyaries
02-16-2011, 07:37 AM
Thanks, Karen. I'm very confident that I am in the best hands with Dr. Lenke, so I AM looking at it as my last surgery. I don't want to go through it anymore. And I'm not getting any younger! ;)

In all my surgeries I never had anyone stay overnight with me while in the hospital so I'm not that concerned about it. I am glad that my sister will be with me over the weekend, though. That's when I feel hospital attention falls off a bit.