View Full Version : Getting Cold Feet

11-14-2010, 10:15 AM
My pre-op tests are this Wed. and just the thought of it all makes me a little nervous. When Dr. Lenke mentioned surgery last Dec., I was actually excited about having a straight back. As the date approaches, more and more anxieties are filling up my brain. Singer's post about doubly glad she had the surgery made me feel, "Yes, I need to do it." On the other hand, I think about Joy and so many on the forum who are depressed and full of regrets. Just Fri. night after tap dancing for an event, my teacher told me I was giving up the prime time of my life (retired and loving every min. of it) and the things I love to do. I tried to explain that my age is a factor for not waiting for surgery. I think the reason the decision to have surgery is so difficult for me is that my scoliosis seldom causes me pain and never stops me from doing things I enjoy doing. I wouldn't hesitate if I had pain that stopped me from playing golf and the surgery would allow me to get back to activities instead of taking me, at least temporarily, from them. I love my aerobic classes and tap class and my friends there, but can't imagine ever going back to high impact classes. So many of our tap steps are high impact.
Are there many who are happy they had the surgery when they had no pain prior to the surgery?
After my pre-op meeting with Dr. Lenke on Wed., maybe I'll feel more like I'm making the right decision.

11-14-2010, 10:29 AM
Just curious, did Lenke mention any down side to waiting until you have pain? You may never have pain. Or at least waiting until your lungs are compromised?

I don't see why you can't wait until you have pain or lung problems both of which might never happen. I would ask Lenke that point blank.

You might be trading in a better correction but so what as long as you are balanced. And the issue of just getting older is there but based on Linda's comments about how people much older than you do well, I don't think that is an issue.

One thing that might be an issue is getting back on his schedule if you drop your spot. You might even be able to raffle off your spot for charity as I think it is very valuable. :)

Good luck.

11-14-2010, 02:40 PM
hi Karen
i do have pain, though i dont know how much is from scoli and how much from degenerative disc disease (or spinal stenosis, or listhesis, etc)...but i still can not make up my mind to have the surgery...or rather, i've made up my mind and changed it 10 times by now...
i can't imagine how difficult it must be to decide on surgery without having pain...

are you very sure your curves are progressing? i dont recall how large they are now...

best of luck with whatever you decide

11-14-2010, 02:51 PM
Sounds familiar....I went through the same mental process. Honestly, Karen? .... it's a crap shoot no matter how you slice it. The odds of a successful surgery are overwhelmingly in your favor, but you don't know how you're going to react to it, or how it's all going to turn out, until you go through it.

For me, it all just came down to a gut feeling that I had to take the leap of faith and just do it. I also had to remember that avoiding surgery would NOT mean avoiding more problems -- and very probably WORSE problems -- in the future.

One thing you have to be careful of at this point is well-meaning but clueless people -- like your tap teacher -- who just don't have the perspective on this thing that you have.

Listen to your gut, and talk it over again with your surgeon.

11-14-2010, 03:16 PM

Getting cold feet happens to all of us. When I saw Dr Memuir in 2005, I ended up getting cold feet at that point and told him to put it on the back burner.

In 2007, my situation was a different story....progression happened fast, and my surgeries were now becoming more complicated, and I pretty much had to beg to get it done. I heard the “you should have done this sooner” statement. The pain was excruciating at times, and made the final decision quite easy.

I did all the things I wanted to do, but in 2007 I was sinking quickly, and nothing I did, seemed to work for pain control.

I just wanted to relay how fast scoliosis can quickly change the situation. I don’t put all blame on progression of cobbs, it’s a combination of degenerative actions or changes that happen like fire. Fire can be contained, but when it gets out of control its hard to deal with. My nervous system was taxed at that stage, it seemed as if I was shorting out and it kept me exhausted all the time. I was waking up tired and lethargic.

You can put it off, and if you do, it would be wise to have timely visits to keep an eye on things. Keep the fire under control. It is an understandable option. Making that decision with no pain makes it so hard.

Also remember that the success rates for posteriors is pretty good and you do have a top surgeon.....
It takes a long time to judge the overall success of scoliosis surgery. My views of my recovery changed as time passed. I feel it takes 2 years to completely heal physically and mentally.(At age 50)There are many reasons why someone wouldn’t be happy with their surgeries, but I think that time plays a major role in judging the outcome of a “successful technique, with correct level selection”. I’m wondering how many patients that reported not being happy (early) have changed their views a few years later? It’s a high number.

What happened to Joyful is very sad. It hit us all very hard. It was a very rare thing that happened to her. This is why surgery is considered a last ditch effort. You could get hit by lightning on the golf course, and I could get attacked by a shark on a dive someday, but divers and golfers don’t consider their sports “a last ditch effort”

11-14-2010, 03:16 PM
My pain was only mild to moderate but increasing. Then, when I booked the surgery, I set out to get super-fit. I found the fitter I became the less pain I had. It sounds like you're very fit and you could probably remain fit for years yet and this could very well be holding pain at bay. But inevitably, for various reasons, you're likely to slow down eventually and I feel that's when the pain could start. At that point, will you still be able to have surgery - probably, but at that stage, it may be a whole lot riskier and your results probably not as good.

Right now, you're fit and your age is not really against you. This would seem to me to be the right time. Yes, you may have to drop the high impact activities, but there are loads of other activities, and I feel absolutely sure you will get back to your beloved golf. If there are compromises to be made, I feel sure they will be worth it for other reasons e.g. a future without worry about what your scoliosis holds in store for you.

11-14-2010, 03:19 PM
I can TOTALLY relate to your feeings Karen. I have changed my mind about this surgery for over three years now and even though I do have more and more pain, I still wonder if its really bad enough to warrant such a major surgery. I am fearful of life after surgery and what the future will hold as I am only 28. It helped calm my fears a little in that Dr. Lenke said he thinks he can stop the fusion at L-4, however after reading more forums I am worried it will mean revision surgeries down the road. I also know though that so many things have to 'line-up' for this surgery to be possible and hold the potential for a great outcome...insurance, world-class surgeon (who is in our backyard!), family who are able to help right now and in my case I would still like to get married and have a family so I don't want to be faced with this decision while having little ones....although I realize getting this surgery won't guarantee that I won't need another and who knows it could be when I have 'little ones'. Its overwhelming going back and forth between all the possible reasons. I guess when it comes down to it, you have to decide to take the risk and believe that it will be better on the other side even if it's not immediately better be determined that it will get there.

-Laurie Anne
Sugery with Dr. Lenke 12/13/10
Most difficult decision of my life
T-68; L-80
28 years young

11-14-2010, 05:15 PM
You guys & gals are just wonderful. You made so many good points. I was just having a weak moment this a.m. Yes, I know I shouldn't listen to those who have no knowledge of scoliosis. I am truly fortunate to have Dr. Lenke as my surgeon. After I talk with him on Wed., I'm sure I'll feel better about taking the plunge. I am in fairly good shape for a 60 year old, but Dr. Lenke told me not to wait until I'm 70, because the recovery is tougher and the results usually aren't as good. I feel sure that the time is right. I'm just nervous!!! Thanks, again.

FYI-My curve was measured at 77 degrees last December. I'll be interested to see if it is the same on Wed. I'm almost hoping that it has increased significantly so that I quit doubting the need for surgery.

11-14-2010, 06:41 PM
Karen - I had all the same feelings you are experiencing. My quality of life was really good and was very active. I too had the surgery to invest in a better quality when i am older. Now 6 1/2 months post-surgery I can already see I will have a better life. The risks in the surgery are still something to take seriously as I did get an infection. My doctors were wonderful and healed me great. Was pretty serious at the time though.
Karen head to my blog www.scoliosisthejourney.com, and you can read about my Dr. Herkowitz 6 month check up, and some of the surgery experience too. I too feel so sad for those that are suffering with pain post-surgery. I have stiff and soreness, but expect that for another 6 months or more. You are so active that you will be going into surgery with a strong healthy body, that helps so much. Unless someone has scoli they just don't understand what we experience.
God bless you as you go into surgery!

11-14-2010, 06:50 PM
Thanks for the encouragement. So many people have said to me in so many words, "Why in the world would you have this surgery if you aren't in a lot of pain?" I have been to your web site several times, but will definitely check out your 6 month report. I remember the picture of your back looking fantastic. Thanks, again!

11-14-2010, 07:14 PM
I've never had surgery before but if I was about to, I'm almost certain I'd have cold feet too. I'm sure your visit with your surgeon on Wednesday will ease your mind. My fourteen-year-old son is apparently "probably a candidate for surgery" and I know when/if the time comes for me to actually make that decision, I am going to go back and forth and back and forth. Hey, nice pun, lol. I'm thinking that it's going to be harder for me to make a decision for my son than if it were me. :confused:

11-14-2010, 07:30 PM
I've never had surgery before but if I was about to, I'm almost certain I'd have cold feet too. I'm sure your visit with your surgeon on Wednesday will ease your mind. My fourteen-year-old son is apparently "probably a candidate for surgery" and I know when/if the time comes for me to actually make that decision, I am going to go back and forth and back and forth. Hey, nice pun, lol. I'm thinking that it's going to be harder for me to make a decision for my son than if it were me. :confused:


It might not be as bad as you think. Having a choice is a double-edged sword. In neither of my daughters' cases did we have a choice. Their curves were moving like freight trains and I didn't need to be an orthopedic surgeon to calculate where those trains were heading... those curves were going to kill or significantly cripple my kids. Sometimes you know what lies ahead and sometimes you don't.

Not having a choice lifts the burden to a certain extent though of course you still worry like crazy. I can say that the worry associated with the second kid was much less after having seen the recovery and result for the first. I don't expect that to actually help anyone and I am not sure it would have helped me on my first kid but I'm just throwing that out there.

Good luck.

11-14-2010, 08:24 PM
Yes, having choices is probably more difficult for sure b/c then one day you're convinced of one way and then the next day the pendulum swings.

Although annoyed with the length of time it's taking to actually see a specialist, I'm not so freaked out now b/c it's not a life or death situation here. I seriously thought I was going to wheel his crippled body in in a wheelchair and that was totally freaking me out. I'm much more calmer now and plan to take things one step at a time. Instead of hysteria, I'm focused on a plan of action now I think.

11-14-2010, 09:04 PM
Golfnut- I had more pain and especially numbness before my spondy surgery. The numbness especially scared me. After that worked well I wanted my scoli fixed. I wasn't having pain; I felt I was starting to become more rotated and deformed. My scoli was progressing and my doc said it would continue to progress. I can honestly say I'm glad I did it, even with minimal pain. And I feel so good now. And I look normal in clothes. And I will be able to play golf again. And I think the quality of my life will be better as I get older. just some of my thoughts and I'm close to your age.

11-15-2010, 06:42 AM
I've been following your posts closely since you're close to my age and also had surgery with Dr. Lenke's partner. You have been doing fantastic in your recovery!!! I'm about 90 per cent sure that the surgery is the way to go for my future. Naturally, no one knows how long they will live, but I had one grandmother live until 98 and the other 103. I can't imagine what my spine would look or feel like in approximately 40 years if I did nothing to stabalize it.
Thanks for your reply and encouragement.

11-15-2010, 08:41 AM

I hear you, sister! I actually cancelled my surgery a couple of months before it for the very reasons you are describing. However, mine wasn't scheduled with Dr. Lenke, and also I'm 38. I'm putting mine off for a couple of years, and then I will have to take the plunge--and hopefully with one of the docs in St. Louis at that point.

I think you are probably doing the right thing by having the surgery. The chances of having something cataclysmic (sp?) happen are really very small. My surgeon has said smaller than the chance of getting struck by lightning. I think it's just more real for all of us on the forum because we saw what happened with Joyful. But I keep reminding myself that what happened to her wasn't so much because of scoliosis, but could be the result of any major surgery. Not that that makes it better, but maybe gives it a little more perspective.

On another note, my grandmother is 95 and very healthy and lucid, except that she has severe scoliosis and debilitating back pain that keeps her from leaving the house. She has to have a full-time nurse to help her in and out of bed and to use the restroom. Hopefully if we have this surgery, we will avoid ending up in that situation one day.

I will be thinking about you and praying for you. It is a major risk, but probably one worth taking in the end.


11-15-2010, 10:30 AM
After second guessing myself for the 100th time, I am definitely going through with it. I don't have the luxury of being young, so I think the time is right for me now. Dr. Lenke had told me a year ago that I could wait one or two years, but that he had a year waiting list. From everything I've read, the surgeon can get better results if your spine has some flexibility. I don't have much, but it would probably only get worse. He also mentioned last Dec. that some of my vertebrae were degenerating. I am fortunate to live 25 miles from Dr. Lenke and to have him for my surgeon.

Thanks for your input!

11-15-2010, 11:25 AM
There is a reason your surgeon recommends surgery. And his is the advice you should heed, not that of family, friends or co-workers. These surgeons know who can benefit from surgery and why surgical intervention is warranted. They see patients every day and know through education and experience the consequences of untreated severe scoliosis. Well-meaning friends are clueless. When I had co-workers suggesting that I’d be making the biggest mistake of my life, I rounded them up into a conference room and showed them my x-rays. Their jaws dropped and that put an end to the discussion. I have never once regretted having surgery, only not having it sooner.

11-15-2010, 11:39 AM
I had the same feelings as you, Karen, before surgery. I shared those feelings with a dear friend who does not have scoliosis but has listened to me over the years. She said a very good point - though it is elective surgery it is necessary. Do not think of it as elective in the sense that you technically have a choice, because in the end I think a vast majority of us do not. And what I mean by that is that you obviously value your quality of life and the surgery will only help you maintain and/or improve that quality of life for years to come.

Before my surgery I kept thinking, if something goes wrong I am going to regret having it now. But if everything goes well I'm going to be so happy I got it over with. I understand these feelings so well.

I actually cannot remember your curves, but I would guess that like others have said, if your surgeon believes this is the right thing to do, it is worth having your activities change in the future.

Try to focus on the long term goal and what the surgery is giving you, rather than taking away.

Best of luck,

11-15-2010, 12:41 PM
Hi Karen-

I am still amazed at how much we are alike, going into this surgery thing. I just wrote a private message to someone about my own doubts! We may need to have a phone call....
I am like you- active and enjoy life. My pain changes from day to day. Somedays I feel pretty good, and can do most things and deal with the pain. On rare days, I feel little pain. Others, I limp all day and my back, hip, and leg are on fire. And I can't do things I was planning for that day. This last year, I have been having more and more of the bad days. But enough good days to make me doubt having surgery yet.
I think to myself, let's put it off maybe one more year. But I have been doing this for several years now. Because I shrunk almost 3" this past year, I really have no choice. My torso feels like I have a weight on my head, causing my spine to scrunch up and distort. It feels very compressed. I am tall and slender (or WAS tall!!) so my arms, legs, and face are lanky and my torso is short and compressed. Weird.
So the progression has made my mind up for me. I have a choice, but deep down I know the answer. And like you, I am thinking of my future. I see older folks who are so crippled up and distorted, and I do NOT want to be like that. And the final factor is that the more my curve increases and the older I get, the less correction I will get-and the harder the recovery will be. And this is not a piece of cake, as we know. My body feels old now at 50, I cannot imagine doing this at 70.
I think you are doing the right thing, in my own opinion. It is just scary facing the unknown. We hope for the best, and the majority of folks are happy with their surgeries, after time, as Ed pointed out. (That man is an amazing fountain of knowledge!!!) Hang in there, my friend! I also sent you a private message... You can talk to me anytime!

11-15-2010, 12:54 PM
Jamie & Chris,
You both make total sense. I know that Dr. Lenke is looking out for my best interests by suggesting surgery. He certainly doesn't need the business since he has a long waiting list. I have one large curve (77 degrees) which had progressed since my last check up 4 years ago. I should not listen to those who have no knowledge of scoliosis and feel they have to give me their negative opionions.
Thanks, to all of you from the forum who DO have knowledge of scloiosis and some have first hand experience with the surgery.


11-15-2010, 12:58 PM
Thanks to you, too.

11-15-2010, 03:24 PM
I think almost all of us go into this doubting our sanity at some time or other... "what in the heck am I getting myself into????" It's the grand roller coaster ride; mixed emotions of excitement and trepidation. The only "known" thing from the surgery is that you will wake up with controlled pain and have to rebuild your physical abilities. The unknowns are what keep us all so anxious until the surgery is over with. That is why we have the roller coaster ride and so much doubting. With that said, and with the slow recovery that I experienced, I still would not trade it one bit for my pre-surgery days. I did not have pain so much as "discomfort". But I was headed for many problems down the road. I can't do everything I'd like to do, but I couldn't then either. I feel so much peppier and my stamina is getting better all the time. Each year I am feeling younger and better and better. I have found that what things I had to give up I have found alternate things I enjoy doing just as much or more. I wish you and everyone else facing surgery success, quick and easy recoveries (relatively speaking) and all the best with your lives.

11-15-2010, 03:37 PM
Thanks Susie*Bee!! You are wise...

11-15-2010, 08:10 PM
Hey SusieBee,

You mention in your post that you are limited on acitivities, can you expound on your activity limitations post surgery? I will be fused from T-3 to L-4 so similar to you and activity limitation is a big concern, although lately the pain/numbness and muscle spasms have been bad so it's made exercising very difficult and more of a 'pain enduring' experience rather than health/mood boosting. How long were you in the hospital? What is recovery like?

11-15-2010, 09:22 PM
You are so young that I think it would be like comparing apples to oranges... Even among people my age, I was one of the turtles (as in taking longer) recoverers. I was in the hospital 11 days. My progress was slow but steady. I thought I was done at 1 year and was content. Each year since I have been amazed at the continued progress. Life gets better and better for some of us.

As far as limitations go, you have to imagine what it's like to have a rods up your back and not be able to bend the way your normally do right now. You won't be able to curve your back. I can't lift anything heavier than about 20 lbs. and it took me quite awhile to build up to that. And that is holding it next to my body, using proper technique. Also, since we are are trying to prevent having to fuse my lower lumbars, I am supposed to use caution and I do. I don't want to have to have another surgery! I have arthritis in my knees and hips and that contributes to my limitations.

You are young and you undoubtedly will bounce back quickly. Don't worry too much about it. The surgery will knock you flat for awhile, but you will recovery within 3 to 6 months, is my guess.

11-17-2010, 07:51 PM
I had all of my pre-op test done today and also met with Dr. Lenke for the first time since he mentioned surgery last December. I know there are possible complications and that I will have many weeks of frustrations and discomfort, BUT, after seeing some of the people waiting in his office today, I know I'm making the right decision. It was also the first time my husband has seen my x-rays. I think he was shocked! Dr. Lenke made me feel that I will have a much improved figure by getting my ribs off of my hips and a reduced rib hump. I sure hope so!!! Thanks, again, for you input. I needed your words of encouragement.

11-17-2010, 07:57 PM
I was looking for this thread of yours and wanted to know how your visit went today. I'm glad it went well and I figured it would. Apparently 80% of our worries are for naught. At least that's how things seem to be around here.

11-17-2010, 08:06 PM
Hey Karen,

I don't remember ever hearing what your curves are. Sorry if I missed it but could you re-post? I'm so glad your appointment went well and I hope it helped calm your nerves some! I know it helped me. Are your curves compromising any of your organ function(s)?

11-18-2010, 09:50 AM

It's great to hear you have your confidence about the surgery back and you are ready to face it! The next few months will be stressful but I really believe this time is worse than the actual surgery :).

Best of luck!

11-18-2010, 11:11 AM
My curve is 77 degrees. I saw one man in the waiting room who walked bent over at a 90 degree angle and thought, I sure don't want that to be me in 20 years! I have a lot of confidence in Dr. Lenke, although I know it won't be easy throughout the long, slow recovery period. I'll be anxious to hear how you're doing following your Dec. surgery. You're so much younger, that you will get through it with flying colors.

11-18-2010, 11:46 AM
Karen, that was like my mom ... bent over 90˚, barely able to shuffle along due to burning pain in both legs and feet because of spinal stenosis, spine twisted from side to side from osteoporosis. Not a surgical candidate because of her age and a heart murmur.

Her condition was a powerful force in helping me decide to fix things NOW.
And I am so glad I did. Although I'm having other aches and pains (that become less severe every day), my previous pain from the scoliosis and degenerated lumbar discs is completely gone.

11-18-2010, 12:25 PM
I have the same misgivings about the surgery. When I sit and lie down, I don't have any pain and think, "why am I having the surgery?". Then, I start to cook or go out shopping and start to feel the low back ache and pain in my leg. I push the time I am standing/walking until I can't stand it. Then, I think about the future.

Having read the postings and spoken with several people on the forum, I know, at least, the next six months won't be easy. But, as one person asked, "won't it be great to have pain that gradually goes away?".

Next Tuesday, Nov. 23, is my pre-op. I'll let you know how it goes.

Until then, I'm finding it difficult to fill in December 7 on my calendar at home. It will be the "first day of the rest of my life." I can't wait to go on trips and be able to tour without my cane seat, not to mention just taking a walk.

I know you all understand.

11-18-2010, 02:59 PM