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View Full Version : Surgery Scheduled with Dr. Lenke in March - Not Sure the Timing is Right



JaniceD
12-12-2016, 08:04 PM
Hi ĖLike many before, I have been reading and learning so much from all of you for the last year or so. Currently, I am scheduled for surgery in March í17 with Dr. Lenke but debating if the timing is right. I am a 59 year old female diagnosed with scoliosis in the 8th grade. Wore a Milwaukee brace 23 hours a day for 14 months. I have some old x-ray films which indicate a curve of 30 degrees, progressing to 60 degrees by age 40. I have always lead an active life with various activities - jogging, swimming, skiing, tennis, biking, golf, volleyball.

Fast forward into my 50ís when I started experiencing more noticeable discomfort and pain doing housework, gardening, exercising, etc. The pain was enough to make me stop and lay down for a bit. I saw a physiatrist at a local neurospine center, had some x-rays taken and found out I was at about an 82 degree right thoracolumbar curve and had lost 2 inches in height. Wasnít even considering surgery at the time since I was doing quite well but getting concerned. I continued on my way and did some PT for core strengthening, researched and hooked up with a Schroth specialist for a few years and continued to remain active. I walk as much as I can and do a quick paced 4 miles without too much discomfort. Walking is actually less painful than standing still for a period of time. I continue to swim, do some biking, kayaking, lots of stretching and am now working with a Stott Pilates instructor on core strengthening. Just started playing pickle ball, too.

I experience more bouts of pain these days but the magnitude is definitely related to how much I do. I feel lucky in that I donít have constant daily debilitating pain. On a daily basis itís more a constant feeling of being uncomfortable which gets worse as the day progresses.

But due to the continuing progression of my curve(s) - it seems surgery is in my future and Iíve been investigating my options. Fortunately, I have access to and have been seen by Dr. Glazer and Dr. Rand in Boston and last January by Dr. Lenke in NYC. I live in southern NH so Boston and NYC are quite accessible. They all agree I will need surgery someday as my curves, pain and quality of life will continue to worsen. Within 1-5 years I was told in Boston. In NYC, I was advised before age 60 is best, 60-65 is good, too. The timing is really up to me. Dr. Lenke said I would be 3-4 inches taller post-op.

As reported by Dr. Lenke, I now have a right thoracolumbar curve measured at around 90 degrees with a 65 degree thoracic curve above and 35 degree lumbosacral curve below. Coronal balance is off 25cm to the right. Sagittal plane shows 33 degrees of thoracic kyphosis, 67 degrees of lumbar lordosis with an incidence of 84, tilt of 30 degrees. Sagittal balance is positive by 1 cm. Rotatory subluxation developing in both L2-3 and L3-4. MRI scan shows no stenosis in the lumbosacral region. Definitely looks a little osteopenic in the spine (subsequently confirmed by a bone density scan).

The size of the curves frighten me and so does how compressed my torso looks on a standing x-ray. Iíve read here and elsewhere that adult spinal fusion surgery is about pain and not progression. I would be fused T-3 to sacrum. I am still functioning well and some days not sure the level of the discomfort or pain I experience justifies a surgery of this extent at this time. I am fearful of doing the surgery in March and giving up my current level of activity, loosing flexibility and all the many other things I could be left to deal with. But if I wait much longer and become less active there is a downside to that, too.

Has anyone had recent surgery with Dr Lenke at the Spine Hospital in NYC? I realize Dr Lenke is one of the bestÖI just wonder how the hospital experience is there.

How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my ďlevel of function would be afterwards compared to her current level of functioning, which is quite goodĒ. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?

Anyway, thanks for taking the time to read this. I would love to hear your thoughts!!
Janice

LindaRacine
12-12-2016, 11:13 PM
How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my ďlevel of function would be afterwards compared to her current level of functioning, which is quite goodĒ. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?


Hi Janice...

I'm fused T4-Sacrum and am pretty unhappy with my lack of flexibility. I'm almost 6 years post-op. I cannot easily get down to the floor and back up again. It's more of a problem for me because I've broken pieces off of both kneecaps (so it's really uncomfortable to have my knees on the floor). There's not a day that goes by that I don't wish I wasn't so inflexible. With that said, I'd still make the same decision to have surgery. My leg pain was pretty bad. I couldn't walk more than half a block without having to sit down.

The amount of flexibility one loses when fused to the sacrum is based on several things. Most impactful are 1) length of fusion (long fusion = T3 or T4 to the Sacrum vs short fusion = T10 or T11 to the Sacrum). 2) How flexible you are prior to surgery. And 3, weight (the thinner the better). Age may also play a role.

Hope that helps.

Regards,
Linda

titaniumed
12-13-2016, 08:44 PM
Hi Janice...

I donít have a problem with inflexibility....But Iím one of the lucky ones. My surgeon takes no credit and just shakes his head in disbelief. He did mention that my will power and attitude was extremely powerful, and that had a positive effect on things. It takes a lot of commitment as a scoli, before surgery, which you have done, and also after surgery.....

Your question about getting down on the floor is a tough one.....This is not an easy thing. I can do it, but not for long. Lifting children is difficult. I have permission to lift 100# and have lifted probably 75# as a test, but lifting is not a good thing for us, especially at our age. One thing that scoliosis surgery has taught me is patience, and also switching gears and slowing down.

I am a life long skier. The lady that taught me to ski at age 3 is now 94 and is still skiing. Of course she is Swiss, and lives at Gunstock Ski area. She and her husband are still very active as always, and this kind of rubbed off on me.....She would pick us up by the back of the jacket, gear and all, and carry us around like this. She would aim us downhill and yell ďGoĒ. (smiley face) My New Hampshire trivia for tonight.

There are a lot of decision threads here.....we have been discussing this topic for many years....

When I think of ď90Ē I think of Rita, and Pilar. Both members from years ago who had surgeries by Dr Lenke and Pashman. I really wish they would stop by and say hi once in a while....

Welcome to the forum

Ed

kennedy
12-13-2016, 11:02 PM
Janice welcome. I'm almost 7 years Post Spinal Fusion. I had my surgery done while still in high school. I never had problems with inflexibility as I have always been really flexible. I can't really answer your question about lifing children. I can get on the floor easily but getting off the floor it not easy

Rise
12-14-2016, 10:51 AM
Hi Janice - I had surgery 7/14 and am fused T9-sacrum. Like you, I was terrified such a fusion would be terribly debilitating. Much to my surprise I have recovered amazing flexibility. I have zero problem getting down and up off the floor and in fact, I exercise (planks, etc) daily. Yes, I have to modify some movements but overall it's not much of a problem. Additionally, whereas I could not walk more than a block without varying degrees of pain I can now walk miles and miles completely pain free. I really believe going into this surgery in fairly good physical shape is vital and key to a good recovery. Of course, there are no crystal balls and in the back of my mind is always the knowledge that set backs are always a real possibility BUT for now at least, I am very pleased with the results.

RisŽ

rmt
12-14-2016, 08:21 PM
I was fused t4-s by Dr Lenke 2 1/2 years ago and am very pleased. I was 45 and very active (played tennis 5 days a week, etc). I had a lower 70 curve and Thorac 65 curve. I still play tennis, walk, jog, weight train and get on and off the floor pretty easily. There is nothing I cannot do and although I may modify certian things, what I have gained far outweighs the little flexibility I had. I loved gaining 2 inches in height and having a nice straight back. Robyn

JaniceD
12-16-2016, 11:38 AM
Thank you all for taking the time to reply and I appreciate all your thoughts.

I think flexibility is so much on my mind because I am still pretty active and thereís not much I donít still do except jogging. But with whatever Iím doing eventually I have to give into pain and take a break. I feel very fortunate that I donít experience such pain where I canít get out and walk.

Which leads to another one of my daily mental debates. With the lack of debilitating pain Ė Iím afraid the March surgery is too soon. Am I jumping the gun? I have bad enough curves, progression and discomfort to justify the surgery but not the daily debilitating pain.

RMT Ė I wonder if you were in the same positon Iím in since you played tennis 5 days a week before surgery. Was it pain that drove your surgery decision or other factors? Iíd be curious to know.

Ed - Enjoyed your Gunstock story! 94 and still skiing - good for her! We used to ski Gunstock when our boys were younger. Good place to learn. Some of our best family memories are from our many days on the slopes in NH/Vermont. Great times!

Thanks again,
Janice

golfnut
12-19-2016, 03:27 PM
Janice,
Welcome to the forum! My surgery was with Dr. Lenke 6 years ago when he was in St. Louis. (I was 60 when I had my surgery) When Dr. Lenke looked at my X-rays a year earlier, he said that I could wait a few years for the surgery since I wasn't in much pain, but recommended not to wait too long. He said that the results aren't always as good and the recovery could be a little tougher if I waited until I was 70. At the time, there was a year long wait to be scheduled for surgery with Dr. Lenke. I thought about it for a week and did a little research and called back to put my name on the waiting list. I was always one to exercise and play lots of sports, but I kicked it up a couple of notches during my year of waiting for surgery. I strictly obeyed the no twist, no lift, no bend restrictions for over 6 months after surgery and didn't attempt to play golf for a year. Much to my surprise, I was able to play fairly well and have even won several tournaments since my surgery. I used to play tennis and started playing pickle ball, too. I seldom think about lack of flexibility except when doing a few floor exercises at the Y. I have no problem getting up and down off of the floor. I don't think you'll have trouble playing with your grandchildren on the floor (or a low stool), but I wouldn't recommend lifting them. Maybe they can crawl in your lap. I was extremely care the first year with everything that I did. I could not stand more than a few minutes before surgery without pain, and I can truly stand for an hour or more at a party without any pain. It's also sooooo nice to have a straight back with no rib hump. People still tell me that they can't believe how much younger I look since I had surgery. I had no idea that my posture was as bad as it was!
I have never regretted having surgery and am thankful for Dr. Lenke and his skills! Best of luck with your surgery if you go ahead with your March date.

JaniceD
12-20-2016, 01:12 PM
Hi Karen,
Thank you for your input. Very encouraging. I notice a lot of similarity in our initial visits with Dr. Lenke. He also told me donít wait too long. Before 60 would be best ( I turn 60 in May) and he wouldnít do my surgery past 65. Too many risks and complications after that he said.

Thatís great youíve gone ahead and won several golf tournaments. Golf is another sport Iíve been shying away from. Partly because itís uncomfortable for me but also due to lack of time. We want to play more when retired so thanks for giving me hope that itís possible.

Iíve gone back and read a lot of older posts/threads on this forum and I am feeling more positive about doing this in March. I keep wanting to believe I can avoid this surgery and defy what the experts are telling me. Iíve seen 3 surgeons and another prominent surgeon has reviewed my x-rays, MRI & medical records and they all say the same thing Ė Donít wait too much longer! So, maybe itís time I listen.

Itís very encouraging to hear positive flexibility stories! And how Iíd love to be rid of this rib hump! But I do resign myself to not picking up my grandkids anymore after surgery (probably shouldnít be doing it now anyway).

Janice

golfnut
12-20-2016, 09:07 PM
Janice,
It's really tough to make the decision to have surgery, especially when your life style has not been effected by your scoliosis. I am truly glad I didn't wait any longer, but everyone has their own reasons for choosing the right time. I just now looked on the internet to see Dr. Lenke's new web site since he has moved to NYC. I haven't looked at his web site in years, but before my surgery I looked at before and after X-rays and read testimonials often. I was so surprised to just now see that Dr. Lenke has two letters from me on his new web site. If you go to "Patient Experiences"-"Expressions of Gratitude", my letters are the third and forth ones in the top row. I enclosed a picture of winning the Ladies' Club Championship following surgery which he included. Everyone is not guaranteed perfect results, but I think your odds are more favorable when you have Dr. Lenke or one of the other top scoliosis surgeons in the country.
Karen

titaniumed
12-20-2016, 10:59 PM
Karen

Thatís great seeing your testimonials on Dr Lenkeís web site.

Remember when I drove a few balls for you when you were in your recovery? When I reported that it felt great? I noticed more stability through the swing.....

What do you think, did scoliosis surgery improve your game?

Ed

golfnut
12-21-2016, 11:10 AM
Ed,
I definitely remember the video and can't tell you how much it meant to me. I have a big smile on my face as I'm typing this. Even though Dr. Lenke told me I'd be able to play golf after a year ( I didn't know if his definition was the same as mine), I couldn't imagine that it would be possible to make a proper golf swing and hit the ball further than 80 yards with two long rods in my back and the inability to twist. Your video gave me hope! My golf game was never better than before surgery, but it was good enough to play at a decent level. I always want to break 80, but the past year I often was in the low 80's instead-age could be a factor! My husband tells me it's my brain that's interfering! When I won the club championship again at our local club in 2012 after not playing for over a year, the club president gave me the plaque and said, "She's back!" I won again this year for the 29th time. I am not being boastful, but just want people to know that life for me returned to normal after surgery-golfing, tap dancing, exercise classes, playing Frisbee with my dog, bike riding, etc.

I apologize for hacking this thread!

walkingmom
12-21-2016, 02:05 PM
Hi Janice,
I haven't been on this forum for awhile. I am fused from T3-L3 so I have much more flexibility than those fused all of the way to the sacrum. With that being said though, sitting on the floor for an extended time is something that is not comfortable but I will do it so that I can participate in some of my grandkids activities. Prior to my surgery, I was very active even though my curve was progressing. I decided to have my surgery when I did because I knew that I was going into it at the best physical shape that I would ever be. That certainly helped me during my recovery. Now that I am 5+ years post-op, I still play somewhat competitive tennis at the age of 54 for a couple times a week. I would play more but I have arthritis in my hand and thumb. My back could handle it....the other body parts are giving out! Best of luck to you as you make your decision.
Donna

JaniceD
12-22-2016, 01:26 PM
Hi Donna
Impressive video of you playing tennis. Again, more hope I can continue an active lifestyle after surgery. Of course, there are no guarantees but I feel I'm in better shape now for the surgery than I was a year ago. The Stott Pilates I've been doing for over a year has made a noticeable difference in my core strength. This past Thanksgiving with all the prep, cooking, cleaning, dishes to do, etc. was easier for me than last year. Of course, I've also learned to pace myself better!
Thanks for taking the time to provide your thoughts. It's a good reminder for me to not slack over the winter and continue to make myself as strong as I can before March!
Janice

titaniumed
12-23-2016, 12:11 AM
My golf game was never better than before surgery, but it was good enough to play at a decent level.

Karen, thanks for answering....itís the same with my skiing. But still amazing that we can still do quite well at our sports, including Donna on tennis. Tennis can be a brutal sport, thatís for sure.

Janice, we have 3 different sports covered now on your thread! (smiley face) Karen on Golf, Donna on Tennis, and myself on Skiing.

Being in good shape helps with surgery....

I hope Linda is reading, I tried to send you a PM but your box is full.

Ed

LindaRacine
12-23-2016, 01:06 AM
Karen, thanks for answering....itís the same with my skiing. But still amazing that we can still do quite well at our sports, including Donna on tennis. Tennis can be a brutal sport, thatís for sure.

Janice, we have 3 different sports covered now on your thread! (smiley face) Karen on Golf, Donna on Tennis, and myself on Skiing.

Being in good shape helps with surgery....

I hope Linda is reading, I tried to send you a PM but your box is full.

Ed

Hi Ed....

Thanks... Cleared out my PM.

While we really don't have any research behind it, I'm sure most surgeons would agree that good fitness increases the chances of a good outcome. It was something I noticed quickly, when I first got involved with the scoliosis support group. It's not a guarantee, but it's probably the one thing we as patients can do to increase our odds. Unfortunately, it's sometimes impossible for people to get in shape, especially for people who have difficulty standing. And, once we've become deconditioned prior to surgery, it's often difficult to get it back, even after surgery. Perhaps this is one good argument for having surgery before the disease puts us out of commission. I went from being relatively active (playing softball, racketball, skiing, hiking, etc., to being almost complete inactive, in the 7 years between starting to have back problems and having surgery.

--Linda

rmt
12-25-2016, 10:20 PM
Thank you all for taking the time to reply and I appreciate all your thoughts.

I think flexibility is so much on my mind because I am still pretty active and thereís not much I donít still do except jogging. But with whatever Iím doing eventually I have to give into pain and take a break. I feel very fortunate that I donít experience such pain where I canít get out and walk.

Which leads to another one of my daily mental debates. With the lack of debilitating pain Ė Iím afraid the March surgery is too soon. Am I jumping the gun? I have bad enough curves, progression and discomfort to justify the surgery but not the daily debilitating pain.

RMT Ė I wonder if you were in the same positon Iím in since you played tennis 5 days a week before surgery. Was it pain that drove your surgery decision or other factors? Iíd be curious to know.

Ed - Enjoyed your Gunstock story! 94 and still skiing - good for her! We used to ski Gunstock when our boys were younger. Good place to learn. Some of our best family memories are from our many days on the slopes in NH/Vermont. Great times!

Thanks again,
Janice

Janice,
Although I lived in daily tolerable pain (maybe a motrin a few times a month) that was not the only factor that drove me to have the surgery. I was terrified of where I was heading (shrinking an inch a year) and hated the way my deformed body looked. Meeting Lenke and knowing that I was in the care of one of the best in the world helped me realize that now was the time to act. I had high confidence in my choice of a surgeon and realized that my 2 options were to continue to shrink, look terrible and end up in debilitating pain or take the chance that with a high probablility I will have a successful outcome by one of the leaders who pioneered this surgery. I know that you are probably scared that what if you do this and you end up worse than you are now and not able to do all you are doing now. Obviously you are a "do-er" now and enjoy being active. There are plenty of people who would take your current condition and use it as an excuse to give up and become addicted to meds and those people will do the same thing after surgery. You are not one of these people. You will be one of the ones who is walking a mile by 3 wks and doing whatever it takes to get off pain meds quickly and return back to your previous normal life.
RMT

loves to skate
12-26-2016, 01:43 PM
Dear Janice,
I rarely come on the forum anymore because I am too busy but will be posting on my 10 year surgery anniversary with Dr. Rand. For me, by the time I was able to get to Dr. Rand for help, it was already too late. None of my Doctors told me I had scoliosis nor did they refer me to a scoliosis specialist. I found Dr. Rand through a friend who worked for DuPuy. Anyway, I had lost my flexibility so that when Dr. Rand operated on me, he was not able to straighten my spine. He did give me back some lumbar curve, but that was about it. I am fused from L2 to the sacrum with pelvic fixation. Before surgery I could barely walk to my mailbox and couldn't stand more that five minutes. Now, I can walk about one mile and can stand about two hours. I have bad knees and ankle joints which limit walking, but I can line dance for about 1 1/2 hours. I am happy about my surgery even though I have some pain every day but it is not debilitating. Just wanted you to know that Dr. Rand is a fine surgeon and flexibility is very important.
Sally

JaniceD
12-27-2016, 07:51 PM
Hi Sally,
Thanks for your response and thoughts. Congrats on your 10 yr anniversary! My husband and I met with Dr Rand 2x fall of 2015. We were both impressed with him and NE Baptist Hospital. He took as much time as needed to discuss my concerns. I still hear his cautionary words about taking the time to weigh and understand my options because I am still doing well enough. I think about that a lot still.
Glad you are doing well!
Janice

JaniceD
12-27-2016, 08:09 PM
I know that you are probably scared that what if you do this and you end up worse than you are now and not able to do all you are doing now.


Hi RMT,
Thanks for your reply and encouraging words. I am absolutely petrified of doing this and ending up worse than I am. My life is really ok as is now but I know my curves will continue to worsen and my quality of life will decline. I like to think I am a 'do-er' and will be walking a mile at 3 weeks! But with the hills in our neighborhood most of the mile will take place going up and down our driveway!
Janice

ripley
02-27-2017, 07:50 PM
Hi Janice, Iím thinking of you and wishing you the best for your upcoming surgery. It must be so difficult as the date approaches. I am very interested in how everything goes as I am scheduled for surgery with Dr. Lenke 8/14 (70 degrees, T4-Sacrum, 5 Osteomities, 2 TLIFs) I have the same question as you: Dr. Lenke is great, but how is the hospital? I believe the surgeon choice is much more important and if the surgeon is good then of course he will be in a good hospital with good people, so not to worry! Please post when you can about how all goes for you. Hope you are OK and Iím sure things will turn out beautifully! Wishing you all the best and a speedy recovery!
-Ripley

golfnut
02-27-2017, 08:50 PM
Ripley and Janice,
Best of luck with your upcoming surgeries. I am so thankful for Dr. Lenke's skills and my successful surgery. You are in good hands!

JaniceD
03-07-2017, 02:03 PM
Hey Ripley and Karen!
Just noticed your comments from end of Feb. My surgery was postponed till 4/20Öso that gave me a little more breathing space. But now I am 6 weeks out again and was just rereading all the positive encouraging posts in this thread because I am getting a huge case of the jitters! When we saw Dr Lenke and staff for my pre-op appts we had such an all-around positive visit we left knowing I am in the best hands. Iím trying really hard to focus on that and keep my thinking on the positive side (but sometimes I digress ).

Thank you for your thoughts and I will let you know how it goes!

Janice

golfnut
03-07-2017, 07:58 PM
I always felt better after meeting with Dr. Lenke, however, I doubt that regardless of one's confidence in their surgeon, that anyone could not have anxiety before this surgery. My presurgery time was the worst! Although I was extremely nervous, I tried really hard to focus on the positives. I was excited about the fact that Dr. Lenke would give me a straight back!

JaniceD
05-15-2017, 11:13 AM
Hi - My surgery took place on Thurs 4/20, 8 hrs, T2-sacrum. Spent an extra day in ICU due to low BP which took some work to stabilize and in spite of that they still had me walk and sit up the morning after the surgery. Amazing! Once out of ICU things progressed quickly, and I was released on Tues. 4/25. We stayed in the area at the Hyatt Place for another week, made the 4.5 hr ride home to NH over 2 days and arrived home on Weds. 5/3. It was so good to be home! Been progressing well with home PT 2 days a week and a wonderful husband who has been 100% caring and supportive! Walking as much as possible inside and outside including slight inclines.

I can not say enough good things about Dr Lenke, his staff and the Spine Hospital. Pain management was right on. The nurses were incredibly caring, attentive and fun. The PT and OT staff were also top-notch. I know there are a few folks out there with upcoming surgeries with Dr Lenke. Please feel free to reach out and Iíd be happy to answer any questions I can. Rest assured you are in the very best hands!

The Hyatt Place hotel is very accommodating to hospital patients and went out of their way to make us as comfortable as possible. They even provided tennis balls to spiff up my walker! The long hallways are great for walking all hours of they day or night. Being right at a mall made it easy to get outside to do some walking, too, as the whole area is flat. We asked for a microwave, wheelchair and with Stop and Shop next door food was not an issue.

Did have some residual pain/weakness in my left leg. Initially, concerning to me as I had no leg pain prior to the surgery. Doctors and PT were not concerned and I was told it would come around. And it has!

Janice

golfnut
05-15-2017, 02:45 PM
Janice,
You sound so good for so soon after your surgery. I am glad everything went so well. I think the world of Dr. Lenke. Best of luck for a speedy recovery.

JaniceD
05-18-2017, 06:36 PM
Thank you, Karen! So far, so good! There's been some not so good days... like today...but even today I progressed some more. Occasionally, I feel like the family dog. I eat, sleep, walk and look forward to a ride in the car! Ha, ha! Take care, Janice

titaniumed
05-18-2017, 08:58 PM
Janice

You sound pretty good for 28 days out. The bad days will come and go, usually as we push the limits.....

Very good timing on having your surgery when you did. You wont have to worry about freezing on your meds....

I became extremely constipated between the 4-6 week time period. It seemed like I built up an immunity to Colace, and really got jammed up. (This was incredibly painful...., the needle was pinned, and held for hours)

Having that bottle or two of Magnesium Citrate on standby is a good idea......(This stuff will break a dam)

http://www.cvs.com/shop/health-medicine/digestive-health/fiber-laxatives/cvs-health-magnesium-citrate-oral-solution-10-oz-prodid-1012005


Ed

JaniceD
05-19-2017, 07:17 PM
Hi Ed,
So true about the cold. I'm glad the timing worked out as it did. At least, I am not also housebound by snow and ice. Thanks for the 4-6 week warning. I'll keep that in mind and get some magnesium citrate on standby!
Take care,
Janice.

ripley
06-04-2017, 06:31 PM
Hi Janice,

I havenít been able to get on the forum for months because of the phishing warning. I have surgery with Dr. Lenke on 8/14 (T4-Sacrum) and have a lot of questions. Iíd like to know what you brought to the hospital and if your husband was able to stay with you there - probably after the ICU if at all Iím guessingÖ Iíd love to hear about your progress, how bad was the pain, and how long it took for it to be at a tolerable level. Also, you said it took 2 days to make the 4 hour drive home. Is that because you were in pain and had to go slowly? I hope you are feeling even better now! Any advice and info is greatly appreciated! Thanks so much!!

JaniceD
06-05-2017, 04:29 PM
Hi Ripley!
I hope I can answer your questions!

The only personal items I used in the hospital were my phone, phone charger, extension cord for the charger, brush, facial moisturizer and tooth brush. I had a robe packed and never used it. I stayed in hospital gowns the whole time - it was just easier that way. Also, I bought clothes to wear when we left the hospital. Make sure you bring really loose fitting clothes to wear when you leave. My stomach was quite bloated and the only thing I had that fit were my old faithful flannel sweatpants! Bring slip on shoes but also be sure those are loose, too. I had some swelling in my feet and the only comfortable shoes I could wear for a couple of days were my trusty slippers.

My husband slept at the hotel the whole time I was in the hospital. I never felt a need for him to be with me overnight. The nurses are very attentive. Just make sure you have the call button accessible at all times! I had a semi-private room and the other bed was empty. They did offer to set it up for him to sleep on but I figured he'd sleep better at the hotel and I wanted him to be well-rested during the day. You will be woken throughout the night for vitals, meds and other reasons so it would've been hard for him to get any rest in the same room with me.

My pain was managed incredibly well. I had one bad night in ICU after my PCA pump was removed but it was quickly dealt with. Except for that incident the pain was tolerable the whole time. After the PCA pump - they had me on oxycodone and ketamine drip. If I remember correctly I was told this was a new combo they were trying out. It was effective for me.

We split the ride home because I did not feel I could manage to be in the car for 4.5 hrs. Not because of pain...just because it seemed too long a period of time to sit even with breaks every hour. By the time we got to the hotel that first day I was ready to lie down for a while. I probably could've endured the trip in one day with hourly breaks but it would've been tough. Plus, after being somewhat isolated in the hospital and hotel for 2 weeks it was pretty stressful to me being on the roads in NY and CT. Sensory overload and too many cars! Make sure you have pillows in your car for the ride home.

Progress is going well. My pain is at a low level now and I am working on reducing pain meds. Can walk around the house unassisted but use a cane when I stroll the driveway or street/parking lots with friends. If I venture to the grocery store where there are crowds I'm still hesitant and continue to use my walker. I like the protection it affords me. Kind of builds a protective barrier around me! PT is going well and my left leg is getting stronger and stronger. Sleep is elusive some nights. It's hard to get comfortable when I tire of being on my back. Still trying to figure out the best type of chair to sit in....I don't think there is one. Make sure you have plenty of pillows available...I take one everywhere I go.

I hope that helps! Let me know if there is anything else,
Janice

ripley
06-06-2017, 10:37 PM
Hi Janice! Thank you so much for taking the time to reply and for the great info! You sound really upbeat and I canít believe youíre going to the grocery store already - thatís seems like fantastic progress!

I have a few more questions if you donít mindÖ

In the information packet I was given it says they only provide 2 weeks of pain medication after release from the hospital. Is that right? If so, did you get a local pain management doctor, or your GP?

How many days prior to your initial surgery date in March did they tell you about the date change? (Just wondering when I might be in the clear. It would be difficult to push it into the school year with kids.)

How long did your surgery take?

It really helps having someone to ask who has just been to the same hospital and doctor! Thanks so much, it is greatly appreciated!

JaniceD
06-08-2017, 08:27 AM
Hi Ripley,
Answers to your questions below. I am going to PM you with my phone # - feel free to text or call if it's easier that way when you have any questions

Yes. They only provide 2 weeks of pain meds when you are discharged. When I had my pre-surgery clearance appt with my PCP she & I discussed pain management and I am currently working through her for pain meds.

My March 20th date was moved when I was around 5 weeks out. I gathered a number of surgeries were postponed at that time because Dr Lenke had shoulder surgery and his surgeon thought he should give his shoulder a little more time to heal.

My surgery was 8 hrs. Started at 8:30am. The OR nurse kept my husband informed via text and phone calls every 2 hours of the progress throughout the day.

Just curious - Are you within driving distance of NY?

Janice