View Full Version : Surgery with Dr Lenke Jan 11

12-10-2015, 09:53 PM
I'm 56 years old and have struggled with pain and limitations for years. My life has gotten smaller and smaller. I am at the point now that I can hardly stand or walk long enough to shower and brush my teeth. I am scheduled with Dr Lenke on Jan 11 for sacrum to T4. I have been a follower of this forum for several years and I feel like I have an idea what I am in for after reading the posts. I am scared of course but I am trying to remain positive as I really want my life back. I trust that Dr Lenke is the best but I worry about the new hospital setting. Has anyone had surgery there yet that could speak to their experience? I also worry that I am going into this without being able to really exercise.
If anyone has words of wisdom I would love to hear them....How to get through the first few weeks, hospital advice, what is it like when you go to a hotel after? What do you need to survive in the hotel? Is an adjustable bed helpful? ect.
I have a strong support system, wonderful husband and grown kids and friends. But I know this is really up to me.
So scared, would love advice

12-11-2015, 06:11 PM
Stacy, your description of being in so much pain that you can barely brush your teeth sounds like to many of us, me included. I could walk 1/2 block before sitting down from pain and could cook dinner, but eat 40 minutes after it was done (and I rested with an ice bag on my thoracic area)...and food was cold. While I have had many "challenges" since my original surgery, I am still very glad that I had surgery, because my life was so controlled by pain. You will be better after surgery, but it will take time.

I did not go to Dr. Lenke or his hospital, so no suggestions there.

Things that I suggest that you consider postop:

- adequate pain control; take enough meds to be comfortable. When you decrease meds, do so slowly; keep a journal of your plan.
- keep a written journal in the hospital. Give it to your family to write down what happens, what the doctor says, questions for the Doctor, etc
- keep track of poop. Make sure that you use Colace (buy generic), Miralax, senna, suppositories, Mag citrate (last resort). When you leave the hospital (journal your poop), if you do not have a bm for 2 days, put in a suppository....this is where your loved ones put on a glove and grease up the suppository and slip it in. Buy your poop arsenal now and have everything available.
- tie your call button to the siderail....very frustrating to look for it in the bed or on the floor postop.

I was scared about having surgery until 2 weeks before surgery. 2 months before surgery, I printed a picture of Dr. Hu and pasted it on the back of my phone. Under her picture I typed out the word "Trust". I must have looked at that picture and said the word trust over a hundred times. I would take a deep cleansing breath and look at the picture. I truly trusted her completely at the time of the surgery. Helped me.

I send you my best wishes for success and diminished pain. You have an awesome surgeon and a good attitude. You will do well.


12-11-2015, 09:43 PM
I also worry that I am going into this without being able to really exercise.
If anyone has words of wisdom I would love to hear them....How to get through the first few weeks, hospital advice, what is it like when you go to a hotel after? What do you need to survive in the hotel? Is an adjustable bed helpful? ect.
I have a strong support system, wonderful husband and grown kids and friends. But I know this is really up to me.
So scared, would love advice

I assume you've already figured out that your exercise tolerance is very unlikely to increase without surgery. (It might never increase, but it's very likely to decrease as your spine continues to degenerate.)

We typically tell patients not to get an adjustable bed, as it encourages them to spend more time there. We tell patients that with the exception of sleep, they should not be spending time in bed.

If you haven't already looked at it, I have a list of helpful tips for recovery. You can find it here: http://www.scoliosis.org/forum/attachment.php?attachmentid=1755&d=1425448000


12-12-2015, 04:17 PM
My surgeon said to never eat meals in bed. After surgery, a recliner is great.

If you want to talk, send me a private message.

12-12-2015, 08:34 PM
Thank you so much for the input. I will PM you.

12-13-2015, 06:45 PM
welcome momsam. im Kara good luck with your surgery

12-14-2015, 05:51 AM
I needed to be gone for 4 weeks. We rented an apartment from a company that claimed they were used by other ortho patients. We couldn't stay there because the furniture wasn't 'user friendly' for me or my husband. Everything was low & contempory. They couldn't even provide us with a straight back upholstered chair! If you decide to check out an apartment - check out the furniture!
Heads up: My dr. said 'no recliner' for the entire 1st year of recovery & he was trained by Dr. Lenke.
Best wishes to you!

12-14-2015, 06:25 AM
Thanks Peg. Right now I am living in my recliner! I'm glad you told me- I see Dr Lenke tomorrow and I will
ask him about that. We are staying in a hotel in NY after the surgery has everyday furniture so I should be ok. (Chairs with straight backs Etc )
I am so sedentary right now because I can't really walk or stand without getting into the pain. I know people say it's better to go into the surgery with some conditioning but that just won't be the case for me.
I'm still so scared- even though I know Dr Lenke is a great surgeon.

12-14-2015, 06:38 AM
Hi Stacy!

There's 2 ways to look at the pain. Mine was manageable & I was functioning, however, each year it took more management. When finally decided on the surgery, I kept doubting my decision b/c I was functioning & I wondered if I could put it off 1 more year. You're in constant severe pain, so you know you HAVE to do this surgery now. It's still a big decision, but maybe the doubting piece isn't so strong.

I was on the upside of poor shape prior to surgery. I did learn & practice the log roll over & over. It's so different when you're body is like dead weight, but I was glad I knew what to do! Even impressed some nurses!

A suggestion: get a picture of your X-ray with all the new hardware. Most people have no idea what this surgery entails b/c everybody know somebody who has had back surgery.

BTW, my outcome was better than I prayed for - I've learned not to limit God! I have no pain. Prayers & good thoughts to you, Stacy.

12-14-2015, 08:23 AM
Many have already posted good suggestions. Dr. Lenke was my surgeon when he was in St. Louis and I am so thankful for that. I was fused T4-Sacrum at age 60. The fearful time before surgery was worse for me than the recovery. I knew it was not going to be easy, but I did better than I expected. After the surgery, I elevated the places I would be sitting with extra firm cushions from another chair to make it easier to sit and stand. I had to have an elevated toilet seat with arm handles for several months. For shaving my legs, I had a long plastic handle from a back scratcher taped to a disposable razor. Feel free to send me an email pottoff@htc.net or a PM.

12-16-2015, 01:06 PM
I was not in particularly great shape before my surgery because like you, I was in a lot of pain.
If you can, do leg lifts sitting in a chair. Raise your leg as high as you can and hold it for 5 counts and alternate legs. Do 3 sets of 10 every day.
Being scared and crying because of your fear are normal.
Your choice is to stay like you are in pain (and take lots of narcotics) probably in a wheelchair
OR have a huge surgery that will probably give you your life back.
You will be amazed how well you will do!
Pain afterwards? Yes, but voice your need for meds often and keep a schedule for meds.
Sending you calming thoughts.

12-16-2015, 01:26 PM
Thanks so much Susan. I am doing those leg lift type exercises as much as I can tolerate. I saw Dr Lenke yesterday for my pre-op and he OK'd me
to have a nerve root block injection to try to get me more comfortable so I can move around more in these 3 weeks prior to the surgery. I hope it helps.
I am looking forward to being on "the other side" and working toward feeling better. Right now I feel like I'm just getting worse and worse.
Thanks so much for your words of encouragement. I think the waiting is the hardest part....

12-16-2015, 05:11 PM
Hi Stacy, I want to wish you the best on your surgery. And as far as the nerve block, I found out that it is very difficult to do on a scoliosis patient. I had a very hard time with it. Your surgery is so close I would question how much benefit you may receive from it and it is a very uncomfortable procedure. Ask questions from the person doing it.

Mom of 4
12-16-2015, 07:28 PM
Hi Stacy! I wish I could offer some info about the new hospital setting. I'm having the same surgery as you, T-4 to sacrum, on January 5. Dr. Lenke told me they built this OR to his specifications and that it's better than the one in St. Louis. He seemed pretty excited about it! I just made my hotel reservations for post-hospital. At the moment, I'm planning on staying out in Yonkers. Kathy recommended the hotel. How about you? My husband and I were in the city last week for my pre-op appointment. After meeting with Dr. Lenke, we were able to tour the hospital. I wanted to see it before-hand, so I could have a picture in my mind. Everything seemed fine and the people I spoke with seemed very nice. The guy (patient coordinator?) who gave us the tour said he thinks Dr. Lenke is a genius. I'm trying to focus on that rather than worry about all the things I can't control. It's very overwhelming, especially because it's getting so close!

12-16-2015, 08:41 PM
Stacy-I'm looking forward to talking with you this week. Yes, definitely the waiting time before surgery is so difficult!
Mom of 4-I just noticed your surgery date is January 5. I will be celebrating my 5 year anniversary of my surgery with Dr. Lenke on the 5th. You both are fortunate to have Dr. Lenke for your surgeon. I will always be thankful for his skills!

12-16-2015, 09:03 PM
Hi Nancy,
So glad you mentioned your date on this thread. Our surgery dates will be one week apart. I hope we get to meet each other. If you want to talk private message me. I was at the hospital yesterday with Dr Lenke and I was very impressed with everyone I met.
I'm scared but ready to get on with it.

12-16-2015, 09:04 PM
I am looking forward to talking to you too, is tomorrow ok?

02-04-2016, 09:59 AM
Just wanted to see how you are doing? I was fused with Lenke t-4-S 1 1/2 years ago and doing very well! I can offer suggestions for you if you need about recovery....Please send me a message but the most important things are..
The first 3 weeks are pretty bad
buy an electric recliner
walk as much as possible because it makes you feel great by releasing endorphins
start to gradually wean yourself off of the narcotics asap because tolerable pain is much better than having your body addicted to narcotics