Getting Cold Feet

[Confusedmom]

Karen,

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.

Evelyn

[golfnut]

Evelyn,
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!
Karen

[CHRIS WBS]

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.

[JamieAnn]

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,
Jamie

[jeneemohler]

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!

[golfnut]

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.

Karen

[golfnut]

Jenee',
Thanks to you, too.

[Susie*Bee]

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.

[jeneemohler]

Thanks Susie*Bee!! You are wise...

[LaurieAnne]

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?

[Susie*Bee]

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.

[golfnut]

No Cold Feet for Me!

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.

[Elisa]

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.

[LaurieAnne]

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)?

[JamieAnn]

Karen,

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!
Jamie