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chmesh
06-07-2011, 04:42 PM
I've never been so indecisive it's ridiculous. I literally am up at night and have lost my appetite. I don't know if I'm making a mistake by having the surgery. It's scheduled for June 29th. I told the surgery scheduler that I was on board, but I'm having second and third guesses....augh.....


I've posted before about 'what to do' ....I'm beginning to annoy myself! I just feel like my 47 degrees are going to progress so why not do it now at 30 before the kids.

Anyways...I've got to call this week if I'm going to cancel it. And really I should've called before but I can't make up my damn mind!

Elisa
06-07-2011, 06:11 PM
I feel for you. Making the decision must be so hard. We had no choice with our son and in a way that was easier I think. All the best to you whatever your final decision may be.

Singer
06-07-2011, 06:24 PM
It's a very tough decision, but I do know that as much as I dreaded my own surgery, I knew deep down in my gut that there was no way around it if I didn't want to be deformed and/or disabled. If you don't have that gut feeling, well....perhaps you truly aren't ready.

Pooka1
06-07-2011, 06:26 PM
I feel for you. Making the decision must be so hard. We had no choice with our son and in a way that was easier I think. All the best to you whatever your final decision may be.

Completely agree with this. In neither of my daughter's cases was there ever anything like a choice in the matter. Had we not gone with the surgery, I am guessing the authorities might have been called in.

These adults who do seem to have a choice have a lot on their plate. It's a double-edged sword. I wish them all luck.

To chmesh, maybe it would help you decide if you got another opinion. Ask specifically about the damage to your spine of simply having 47* curve through the rest of your life even assuming it never progressed any more. In other words, there is more on the table than progression as I understand this. Much more.

Good luck.

golfnut
06-07-2011, 07:04 PM
I also drove myself crazy worrying about making the right decision since I wasn't in much pain. I had the surgery at age 60 and now that I have the huge cosmetic improvement and a better prognosis for my later years, I am so glad I had the surgery. I have also been extremely fortunate with a smooth recovery (so far).
You are young and don't have a huge curve, but I don't know from your post how many vertebrae will be fused. I am fused t4-sacrum and wonder if I had had the surgery at a younger age if I could have retained some flexibility by not getting into the lumbar with the fusion. If you are this indecisive, I would get a second opinion from a SRS surgeon and then make the decision. It shouldn't be that hard to reschedule. Dr. Lenke knew I had reservations and even with his busy schedule told me that I could cancel at any time except preferably not the day before! There are definitely people who are glad they had the surgery at a younger age and some who wished they had, so I understand that your decision is a tough one. I was at the "now or never" age in my opinion.

jrnyc
06-07-2011, 07:44 PM
maybe if you have second or third opinions from other surgeons who all agree with your surgeon, it would help...??

jess

chmesh
06-07-2011, 07:49 PM
thanks for listening guys. i have had some other opinions...all say they would operate on me, but it's my decision.

i would be fused from T1-T11 or 12. so a long one.
i also am not in horrible pain, but it has gotten considerably worse since college, and there has been some progression since then too.

i am also sick and tired of dressing my curves...if you know what i mean

Pooka1
06-07-2011, 08:38 PM
Hey! You can ask about the possibility of needing to fuse into the lumbar if you wait. It sounds like your fusion would be entirely in the T part of the spine now. If you stabilize that now, it is my understanding that you are not likely to need another surgery to extend the fusion below T12. That may not be the case if you wait and they have to fuse well into the lumbar.

titaniumed
06-07-2011, 08:55 PM
We all turn into zombies after making our decisions. Even after waiting 34 years for my surgeries, I thought “what did I do?” My mind was on my surgeries almost full time during that waiting period, and always, I would think I waited this long, better get it done before it kills me. Extreme pain does help in this case. It’s the only time where pain is of some value....Imagine that?

The decision should be made by the patient. This decision should not be from someone who has told you “just go get it fixed” like getting a new brake job on your car. If you have done your homework, have your “ducks in a row” and have really thought about it for some time, your decision to set that date, which you have done, is probably the correct decision and you are just freaking out. It happens to many of us. I set my date and my goal, and never looked back. I was prepared for the worst.

If you have little pain, chances are that you can put it off for some time. If you feel that you “jumped” on your decision, you can always do this later, provided you have all your “ducks in a row”. By “ducks in a row” I mean insurance, time to heal, financials, support team, etc. Surgeries tend to get a little harder as we age, its always best done younger.

My surgeon suggested that I go online to the scoliosis forums and talk to people. Prior to registering, I would read through the threads and posts, many many of them, to get an idea as to what things would be like. You know, the surgery, the surgical pain, the recovery, all of it. This forum is invaluable for scoliosis patients. There are many of us here, and we like supporting one another.

Best of luck on this. I was one who also “put it on the back burner” in 2005. I wasn’t ready. When you are ready, you will know.
Ed
Oh, I forgot to say that I did come out quite well as most of us do.

jeneemohler
06-10-2011, 12:48 PM
Ed, as usual, says it best!! He is so right about having all your ducks in a row. I had to be prepared to be without income and able to take off a chunk of time from work. And afford my copays...

I felt ready for a couple years before I did it, but for some reason, put it off twice. My ducks just weren't where they needed to be! They actually wanted to fuse me clear back in '80, so I put it off a long time. 30 years!

Pain is a major measuring stick. As long as I was in tolerable pain that was controlled somewhat by medications or injections, and my curves progressed slowly, I was ok with putting it off. I was reluctant to limit my flexibility at a young age if I didn't have to. I was very active in sports and activities. (However, my perception of being limited has changed dramatically after surgery. It is much less limiting than I imagined.) I was also waiting for improvements to the techniques.

But I also had my "aha" moment when my curves started to progress rapidly and my pain level shot up. You don't get as much correction if you are older. Mine progressed so fast that my 50% correction ended up not a whole lot better than where my curves measured 2 years prior to surgery. I really should have done it then, but who has a crystal ball...???

Everyone is right, you know in your gut when it is time. Your docs don't know what you are actually feeling like-it is ultimately YOUR choice, as long as there are no sudden complications. I felt empowered when my doctor told me that-not so out of control. And I feel like I did it at a perfect time-for ME. I was young enough to heal easier than if I waited too long and were older. And I spent a lot of my younger years being able to do things I may not have been able to do, or at least not at that high level, with a fusion as long as mine is. But remember-we are all different.

So go with your gut. You are still young and have time. And no matter how sure you are, when you decide to actually do it and stick to it, there will STILL be some uncertainty and a little bit of fear. It is natural, and we have all been there.

Good Luck, and keep asking those questions!

titaniumed
06-10-2011, 01:56 PM
Jenee

I’m playing hookie today. I can always use the “back pain” excuse and get away with it. Just one of the benefits of scoliosis....extra days off work. Your damn tootin I’m going to use it! Don’t tell anybody. Remember, practice you moan, I have it perfected! LOL

Nice of you to offer to go see Susan....One of these days I will pass through Bend going up to Portland.....I will let you guys know...I cannot plan, it has to be a spur of the moment kind of thing.

Ed

chmesh
06-10-2011, 04:30 PM
Ed you do have a way with words. Thanks to all for your words of wisdom. I just read, cover to cover, Scoliosis Surgery: The Definitive Patient's Ref. and it was extremely helpful.

I'm going foward...full steam ahead and I feel at peace with it.

CaroleM
06-10-2011, 06:28 PM
I was in a very similar position to you and am only a few years older. I opted to do the surgery as my progression was very rapid. I had surgery on 5/27 and although the week after wards I certainly regretted it, two weeks out I am feeling great about my decision. My husband just keeps telling me how brave I was to choose to do this now at this point in my life rather than wait for it to get worse. Of course everyone has to make a decision that is appropriate to their life style. I too was letting the anxiety get the best of me, but surprisingly enough the night before my surgery my husband and I had a great date night to take my mind off things and I actually got a good nights sleep and was ready to go. Somehow my anxiety just left me as I realized that my quality of life would improve when all was said and done. Please message me if you want to talk.

jeneemohler
06-10-2011, 06:40 PM
Ed-

Sue and I would LOVE to meet up with you someday! We will figure it out when the short-notice day comes...even if I have to moan and play hookie! Can you hear me now???

titaniumed
06-11-2011, 12:08 PM
Jenee
LOL!
No! Practice, but save it for your boss for when you call in sick. You know, when you go skiing. He he

I just love using “Don’t tell anybody” on a public forum.....Laughing is necessary in surgical recovery, it keeps the lungs clear!

Chmesh
I actually didn’t read David Wolpert’s book till last summer. I did read many others through the years while waiting. I was a Luque wire candidate in 1974 and had plenty of time to think about it. It’s a great book, he covers quite a bit. Every person that has scoliosis should read it. Its nice to know......

Carol
Congratulations! You made it!
A bottle of Magnesium Citrate would be a good thing to keep laying around just in case. Constipation on opoids seems to be the norm, it happens to most of us. Its sold over the counter.

Multiple shorter walks are better each day than one long walk. It promotes peristalsis, especially in the intestine. And the water, don’t forget that one.
http://en.wikipedia.org/wiki/Peristalsis
Ed

debbei
06-11-2011, 06:25 PM
For me it was easier--I was older, and I had progressed quite drastically, and I was having pain. That's what made my decision easy. If I had any doubts that I was doing the right thing, I would have canceled. Granted, I was scared out of my wits, but I thought I was doing the right thing. With my results, it turns out I was right, but who knows that going in?

I think that if you can't come to terms with this and you're not 100% sure you're doing the right thing, you should cancel. Who knows, maybe you won't progress as fast as you think, and you can wait for surgery to advance even further.

((Hugs))

Lilysaidwhat
06-27-2011, 05:39 PM
I am very decisive and would always rather make a choice and deal with the fallout than go back and forth. That said, I had the "nonononononononononono" feeling a fair few times pre-op but went forward anyway. The first month was a living hell but now, 4 months on, I am much better off than I was for the last ten years. Can you wait? Sure. Do you want to have it hanging over your head? That's your call.

I think most people come out for the better. I don't know where the apex of your curve is, but be sure to ask about the possibility of having to stabilize the lumbar vertebrae later on. I'm 14 levels fused and have some frustration with movement (I'm still learning new body mechanics and how to bend, etc.) but overall, my pain is startling less than before.

Assuming you are progressing at a rate of a degree a year, you'll be 57* when you're 40. Do you want to dress 57* at 40?

I guess, in the end, you either jump or you don't. Unfortch, with this stuff, you can't just stick a toe in the water and test it out.

I was never 100% sure I wanted to do it. The morning we were at the hospital I wasn't sure I wanted to do it. When I woke up post-op I sure as hell didn't want to do it! But here I am, and while I feel like I've been to the gates of hell (for *me*), I'm not prepared yet to say I am glad I had the surgery, but I am now fully admitting that I FEEL and LOOK better than I did without it.

I'm pulling for you in either case.

chmesh
06-27-2011, 07:31 PM
Lily,

I am going forward with it and it's this Wed! I'm still having the nerves, but like you said I think it's normal. I feel good about my decision but am scared too. It's good to hear people feeling happy about their outcomes. I'm hoping for the same but I know nothing is perfect. My pain now is not unbearable so I am prepared to feel some unbearable pain!

I haven't asked about later deterioration. I'll be fused T1-T12. I'm hoping my range of motion isn't too different.
Thanks for your response. I'll let you know how it goes!
Christina

Lilysaidwhat
06-27-2011, 08:10 PM
Good on ya! You'll be just fine. Pinky swear.

JenniferG
06-28-2011, 05:12 AM
All the very best for Wednesday, Christine! We'll be thinking of you and looking forward to seeing your first post when you're able.

loves to skate
06-28-2011, 11:12 AM
Christine,

I will be thinking about you and will say a little prayer for you. I pray for a sense of peace for you tonight and for everything to go well tomorrow. The waiting is the most difficult and hopefully you won't be in any unbearable pain after the surgery. You will do just fine.

Sally