View Full Version : New to forum - had my surgery August 23, 2010

12-11-2010, 09:29 PM
Hi Everyone,
I've been following the forum on and off for more than a year - had a very hard time getting the okay to post and finally just gave up. I recently was able to get in touch w/ golfnut who encouraged me to try again - now it's working. If there are others out there who have tried and tried and given up, now is the time to try again!
I had successful surgery w/ Dr. Lenke in August. You all must know that there are many of us out there who are learning from your posts, even though we have not been able to post ourselves. I was able to prepare for surgery by searching for posts that dealt w/ my questions (re traveling, etc). I was also able to get to know Shari@msu from her blog., meet w/ her, and benefit from her encouragement and wisdom.
I was diagnosed w/ scoliosis when I was 12, and had a fusion when I was 14 that didn't involve any hardware, but two tibial grafts, one attached to each curve. In the last few years (I am 57 now), it was clear that my curves were progressing (thoracic 91, lumbar 86). I had a very good quality of life and was very active, but did feel the results of lumber stenosis w/ leg weakness after being on my feet for about 20 minutes. Thankfully, my local orthopedic specialist referred me to Dr Lenke, and I took the leap about 15 weeks ago. My fusion is from T1 to sacrum, and my curves are now in the 50's. A remarkable outcome considering that Dr. Lenke had to essentially cut apart the fusion I already had, and start over. I am happy to say that I feel 100% recovered by now, and can stay on my feet as long as I like w/out feeling like I'm about to collapse!
I know that the decision to have surgery can be agonizing. The preparation is nerve- wracking. The surgery itself is extremely challenging. But it's nice to know that there are those of us for whom it was absolutely worth it all!!
I am looking forward to being able to communicate w/ you all now - but maybe I will be able to answer some of the questions I was hoping to ask a few months ago!
The link to my blog was posted by golfnut a few days ago (Nancy's surgery blog), and I'll try to put the link in here as well. If you are anticipating surgery, you may enjoy reading what my day to day experience was like - my husband was quite good at describing his ordeal as well!
Cheers to all,


12-11-2010, 10:05 PM
wow, I am so glad I checked the forum one last time before I went to bed tonight! I am having the full fusion (probably T1-Sacrum) on December 27th. I have good days and very scared days as I approach this huge challenge, and I really needed to hear something encouraging tonight. Thank you for taking the time to share your story. Like you said, for those of us facing the surgery, it is very helpful to hear from those of you on the other side, doing well.


12-11-2010, 10:09 PM
Glad that you are doing so well. I wish I felt as good as you


12-11-2010, 11:41 PM

You sound very upbeat which is needed when the going gets rough. It was nice reading your post....You must be thrilled!

I presume that the tibial grafting and strut grafting days are over with....it would be interesting to see your Pre Lenke x-rays. Of course, the post Lenke x-rays would be welcome also. Can I ask who did your original surgery and where did it happen? I can see why your local guy would send you off to Dr Lenke.....

Take it easy....you might feel good, but have a while to go with your healing. Keep walking.

12-12-2010, 12:21 AM
Welcome to the forum nanlo...

and Happy Birthday, TiEd


12-12-2010, 11:51 AM
Someone else posted your blog the other day Nancy and I went back to read it but couldn't for the life of me find it again and now here you are. Arggg, why do I have to work every Sunday!? I'll look forward to reading it all when I get back later on. :D

12-12-2010, 01:59 PM
Thanks for the welcome...
I am attempting to attach my before and after xrays - if I fail, I'll get help! They are in my blog, however. My original surgery in 1967 was w/ Dr DePalma in Philadelphia. This was back in the day when I had to be in a body cast for 6 months while my spine fused. I'm happy that those days are over.
Thanks for the encouragement to take it easy - it's a balancing act - learning how much is too much, and when to take a rest. I say that I FEEL 100% recovered, but I do have to take life a lot slower, which is not a bad thing. All physical movement is very controlled - still use the reacher at times, but can finally go down on one knee to reach things on the floor.
I wish everyone recovering from surgery peace and healing. All those anticipating surgery, peace and confidence!

12-12-2010, 02:32 PM
Nancy, you are truly an inspiration to those who are contemplating this surgery. You had some very severe curves. It's great that you are doing so well only a few months after. Welcome to the forum!

12-12-2010, 03:02 PM
Wow Nancy. What an inspiration you are!!

I am a little nervous about my surgery, the recovery, and the permanence of the change, but YOU made me feel so much better about it. I have always been a very positive person, and feel like my glass is half full. But this has been a challenge for me for some unknown reason... You are amazing with your attitude and your determination. I cannot believe how quickly you progressed. Everyone with upcoming surgeries should read your blog. It is wonderful, easy reading, and quite entertainingl I had to chuckle at your husband's creative writing and sense of humor!

I'm glad you joined our forum, and I look forward to hearing how you are doing.

12-12-2010, 05:46 PM
I really enjoyed reading your blog Nancy, thanks for sharing and I'm so glad you are feeling so well. :)

12-12-2010, 06:03 PM
Nancy wow your cuvres was really severe
your story was really great :)

12-12-2010, 06:14 PM
Nancy, was the measurement of your curve(s)? I think I missed it.

12-12-2010, 06:52 PM
I knew everyone would enjoy your blog. I'm so glad you tried again to post. After receiving personal emails from you and several others on the forum, I am so much less fearful than weeks ago. Instead of worrying about how close my surgery date is, I'm focusing on the months after surgery, such as, possibly driving by March, seeing my teacher friends when walking at my former school before and after the kids are there, reconnecting with friends from years ago by taking time to do so, etc. Today I was thinking that one month from now, I'll be 1 week post op. It will be a challenging time, but at least the surgery would be over. I'm just trying to have a positive attitude that my surgery will be successful and that it's the best decision for my future. If I only had pain now, the decision for surgery wouldn't have been so difficult. I am thankful for one of the best surgeons in the country who is 25 miles from my home. I am also thankful for the forum and my new friends. It's weird how you can feel close to people you've never met. Nancy, you mentioned that you had the feeling "I'm going to do great" going into the surgery. That is my new motto! It's so much better than the "What if . . .?"

12-12-2010, 06:54 PM
My curves used to be 91 thoracic, 86 lumbar...
now both in the 50s. My before and after photos are in the blog!

12-12-2010, 06:57 PM
Hmm, that link doesn't take us to a pic. You might want to check it again Nancy.

12-12-2010, 08:57 PM
Welcome to the forum. I find it interesting the number of people like you and me who have the surgery at about age 57 (if not when they are quite young). I think that's about the point you can't take it anymore. It sounds like you had a very successful surgery and hope you go on to have a very steady recovery. The link didn't work for me either. Good luck to you! Janet

12-12-2010, 09:20 PM
So sorry,
I typed in org instead of com. You can tell I haven't done this before. http://nancyssurgery.blogspot.com/

12-12-2010, 09:29 PM
I am sure that you WILL do great! I think you are on to something when you choose to focus on one month from now! We can't help being anxious - how can we not be? But I love the idea of concentrating on being on the other side of surgery. You will be there before you know it.

12-12-2010, 09:30 PM
I also notice the number of women who have their surgery at or around age 57. I think you're right Janet, it must be around the point of no return!

Sounds like you've done extremely well, Nancy!

12-13-2010, 01:36 AM

I found your x-rays! wow.
How long have you known that eventually you would have a revision done? Was this a recent thing or were you waiting for technology to catch up? How long were you in pain? (Pre-Lenke?) How bad was the pain?

Love the Spinal tap reference in your blog. Of course, you know what to do when your at 10? Thatís right, turn it up to 11. lol

Youíre a trooper, no doubt.
Thanks for posting. It gives hope for future difficult revision candidates.
You will be ready to come out here and go skiing with me next winter. Donít worry, we wont jump too high.

12-13-2010, 07:43 PM

I found your x-rays! wow.
How long have you known that eventually you would have a revision done? Was this a recent thing or were you waiting for technology to catch up? How long were you in pain? (Pre-Lenke?) How bad was the pain?

Love the Spinal tap reference in your blog. Of course, you know what to do when your at 10? Thatís right, turn it up to 11. lol

Youíre a trooper, no doubt.
Thanks for posting. It gives hope for future difficult revision candidates.
You will be ready to come out here and go skiing with me next winter. Donít worry, we wont jump too high.

I didn't realize that I would need revision surgery until about 2 years ago. I didn't have much pain at all, but I wanted to be proactive w/ the scoliosis as I aged (degenerative changes in the disks, etc). I was thinking PT... My GP was never very interested in the scoliosis - I guess she figured it had been fused and I was doing fine. So I got a new GP who sent me to an orthopedic surgeon - we did xrays and an MRI - low and behold, at L4/L5 the space for my spinal cord was so tight that there was virtually no spinal fluid detected in that area. So that kind of explained the leg weakness I'd been having - but as everyone knows who has stenosis, it really sneaks up on you so gradually that you get used to it. Or that's my experience anyway. So my ortho guy referred me to Dr Lenke - it took a couple of months to get on his schedule - and when he thought I was a good candidate for surgery, and I had surgery about a year later - that was his wait time. With the curves progressing, I could have expected to become incontinent or lose my ability to walk eventually. Or that's what I presume. ! So, no, I didn't really expect to have surgery, and if I hadn't sort of pushed the issue w/ my doctor, I probably would have waited till it was quite a bit worse...
Skiing! That is something I would really be afraid to do - aren't you afraid of crashing, falling, being run into??? I did ski a lot as a kid.
My husband has a way w/ words, huh.

12-13-2010, 10:34 PM
I think your timing was pretty good. The weakness in your legs was an indicator of problems, just like my sciatica events through the last few years.

All skiers are afraid of crashing....It all depends on your ability, and how hard you push I guess. I’m more afraid of falling off a ladder or a car crash.

I actually crashed twice 9 days ago and forward flipped on one of them. They were low velocity tumbles in powder. Crashing on hard pack at high speed is not something I’m allowed to do. If you keep the speed down its ok and its great exercise. I actually pole on flat runouts like a cross country skier, it helps the muscles in my upper back.

I did have some issues after I started skiing. The slow and steady process of rebuilding all the soft tissues took awhile. It was discouraging for me since I was a animal on skis, but in time I became very satisfied with my outcome.

I still cant believe it. I never expected to come out as well as I did. It was a miracle.
Here is a pic of me at Lake Tahoe.

12-14-2010, 04:11 PM
Just knowing that skiing is an option is really something! Sounds like you are having a great time.
You sure don't look like you ever had scoliosis!
Don't you feel like you were given a new life? That's how I feel.
Have fun on the slopes,

12-14-2010, 04:27 PM
Congratulations on your successful surgery. Great blog.

That Lenke is just amazing. I think your case and others posted here are an object lesson in rather than focusing on enrolling your child in a competitive daycare or kindergarten when they are born (or conceived), get them on Lenke's waiting list just in case they ever develop scoliosis. (smiley face icon substitute).

12-14-2010, 04:33 PM
Beautiful pic Ed! That's neat that you're way up on the slopes looking down on a lake. I guess that's why they call it Lake Tahoe eh. We used to go skiing all the time when we lived down in Victoria and drove 2.5 hours to Mr. Washington up here and now that we actually live up this way, we no longer ski. Go figure.

12-14-2010, 07:07 PM
Ditto here.... I drove 3 hours every week to go skiing at Mt. Bachelor, then moved here and only get to go a couple times a year. What's wrong with us??? Not enough days in a week, I guess. Dang jobs!!!!!!!

12-15-2010, 02:54 PM
There's a few reasons we gave up skiing. It's really expensive, although with living only half an hour away we could come right home afterward instead of spending nights in a chalet. Our daughter has zero interest in going and neither does our younger son (scolioboy) which is fine b/c his back is already a huge mess and I don't want to make it any worse if he takes a fall. It was our older son that was really into skiing but he doesn't live at home anymore. I don't want my husband to ski b/c if he injures himself, he can't work and we don't have that kind of insurance. I really hurt my lower back a few years ago when I tripped on my shoelace running across the parking lot and it's been really iffy since then and I'm afraid to really wreck it b/c then I can't work. I would love to drive up there through, enjoy all the snow and sit in lounge by the fireplace and drink hot rums though, mmmmm, my kind of skiing.

12-15-2010, 03:41 PM
Wow, what you have had to endure for so so many years, you are a very brave soul. You are absolutely right on the preparation. This website is great for that, and for the horrendous pain and personal stuff that you go thru' after surgery. Reading even the very old posts helps you through the tough times, whether they be hours, days or moments. I am so glad you feel well enough to post. I understand that mental/physical inability to get in front of a computer to do anything! I, too, will soon post of my post op recovery, most because others can benefit from the personal journey one goes thru' in pre/during/post surgical information. Best of luck on the rest of your recoup!