Need some reassurance

[Debra JGL]

Thanks Jamie Ann for posting about your feelings of doubt. I just had my first round of preop testing yesterday in NY. I had to go onto the "surgery" floor at one point during the day. Well, I thought I was going to start crying. I just felt overwhelmed. I had some time in between appts., sat outside, watched people walk by and thought "what the 'h' and am I doing". I do have constant pain, but it's tolerable. I came back around though because I believe this surgery is the right thing for me and that my curve, deformity and negative effects on my body will continue. This surgery is (I believe always) elective, and so we have to make the decision when the timing is right, if ever. I had my bones, lungs and heart checked to see if I'm in good condition for surgery and that really made me realize that I'm not going to get into better condition with age, and to increase my chances for a good outcome I want to do it now. Luckily too I saw my surgeon last. It was good to see him, he's very calm and has a reassuring way about him. He also gave me some news I was very happy about, that after reviewing my MRI and bending xrays he feels I'm a good candidate for the selective fusion, about t2 or 3 to t11 or 12, with the knowledge I may need an extension in the future. I know this will not be an option for me much longer, I still have good flexibility in my lumbar (one good think about my back). It sounds like you are able to have a shorter fusion at this point too. My aunt had a terrible deformity, she was very hunched on one side and hips very uneven. I'm not sure how else this affected her life, but I don't want to end up that way. As, many have said doing this while your still in good health and before your curve get bigger and stiffer will increase your chances of a good outcome. JenM - I had to laugh about the "happy juice". I've joked with my husband too that he may have to hit me over the head with a frying pan on the way to the hospital, but happy juice sounds alot better. Jamie Ann - good luck with coping and your preparations over the next month

[Confusedmom]

Wow--it's really great to hear from JenM and JennyRN and others that despite your complications you are glad you went through with the surgery.

Just for a slightly different perspective, I actually cancelled my Sept. 15th surgery date because of some of the fears JamieAnn has expressed. I know I will have to do it, but I am not ready yet.

BUT, I think the point someone made about doing it early and young while your curves are not so great is truly important, because maybe you can get away with a smaller fusion. I also have had 1-2 degree progression per year, but now my biggest curve is around 70* so most of the surgeons are recommending fusing basically everything (T3 or 4 to L5 or sacrum). So, this is a long-winded way of saying that if I could have done it 10 years ago and fused fewer levels, I would have. If you can have a selective fusion now and avoid going all the way down later, I'd go for it!

Best wishes,
Evelyn

[JennyRN]

It is never easy to explain to others how you are feeling about this type of condition or surgery unless you've been there. This forum has been a wonderful place to connect with others that understand. Like JenM, I've had complications post-op (different complications than hers) and I am returning to surgery on Monday, August 16 to have my bone graft replaced. I pretty much know what to expect, but I'm still scared. I can say that even from Day One post-op, I've not regretted having this done. The ability of being able to take a deep breath without feeling constricted on one side has been well worth the pain. And it's the thought of being able to be a "normal" person (and mom) after all the recovering is done is what has gotten me through this. Good luck!

[ADMoul]

Just one more chiming in agreement with all the other posts. My corrected curves are actually worse than yours are now pre-op. Not a complaint, but just the reality of waiting until I was in significant pain to pursue surgery. I admire your courage for taking this step now. I lived in denial about my progressing curve for most of my adult life and absolutely agree with a statement from someone who said this gets worse after age 50. It's normal to have doubts and misgivings, but I believe you're on the right track. Best of luck just getting through this miserable pre-op anxiety. Some days you feel like you can't live your life because all you can think about is your upcoming surgery. Take care--lots of us are right there with you.

[Jacque's Mom]

Shari - your comment about suffering in silence certainly is true in my case. Of course at home my family knows how I suffer, but at the office, only a handful of people know I am in chronic pain. I told my boss last week about my upcoming surgery in December, and he said while he knew I had back issues, he would never, ever have imagined how bad it was. I come in every day, happy (not without some trips to the ladies room in tears from pain) but I never show it. It's dificult but I've done it for so long, I'm almost mastered it. No one can understand the severity of scoliosis and how it effects your life, unless you have lived with it - emotionally and physically.

JamieAnn - I second guess myself as well. Since I had the Rhizotomy, I have had such relief from that horrendous waist/buttock/hip pain that I think "what if this procedure fixed me for good" but of course knowing I've been in this situation before and the pain returns. You can make yourself crazy with the "what ifs"! You are doing the right thing. My first surgery was the best thing I ever did. I became painfree which I never thought was possible. I'm praying for the same result the second time around. GOOD LUCK! Regards, LYNN

[lray]

I believe that most of us have suffered the pain in silence. And it's great to have somewhere to vent, with people that understand.

Shari

So very true...

[Shari]

Hi Jamie,

If anyone goes into this surgery without fears and concerns, they can't be normal. I think if we all had some kind of cancer, we might be better understood, but it seems that unless you have any kind of "spinal-osis" or know someone who does, this surgery is hard to explain.

Believe in yourself and your strength. When you get overwhelmed by emotions, get on here and type it out. You never know who's reading what you have to say, and feeling they're not alone!!!!

I believe that most of us have suffered the pain in silence. And it's great to have somewhere to vent, with people that understand.

Shari

Well, I have to say you have all helped me tremendously in feeling more confident that surgery is the way to go. I think the negative comments and results on this forum become really the only thing we think of when feeling stressed. But I do notice how many of you have positive outcomes and do not actually regret surgery.

Thank you very much for your encouraging words. I will keep you posted on my journey!

-Jamie

[lray]

Hi Jamie,

I'm in agreement with the others. No one can know when the time is absolutely right for this surgery. There are so many comments about this on the forum because the anxiety is overwhelming as the date approaches. I too am starting to question my decision now that my surgery is about 8 weeks away. So when I start to doubt myself, I think about how I used to look and feel 20 years ago when I had no pain at all and my hump was hardly noticeable. Now at the age of 50 I realize that my spine and deformity are getting worse and will continue to get worse, and I might have other co-morbidities at an older age that will make the surgery/recovery more difficult, or maybe even impossible. So Jamie if you are healthy and have support at home, you're comfortable with your surgeon and everything else is falling into place, then you should feel good about your decision.

[doodie]

Hi Jamie -

I am joining the chorus of those here who are in agreement that you are making the right decision about proceeding with surgery.

Prior to surgery I was in a lot of pain and could not sleep - it was hard to get comfortable and I would awaken after only 2 hours with pain and from that point on never really fell back into a deep sleep.....I considered it merely resting... I became sleep deprived and began having memory issues (as well as other things) and I was incredibly emotional - I was just sooo tired! (My husband advised me to double up on my vitamin B when I began crying watching Andy Griffith reruns! ) Maybe you are also a bit over-emotional due to your sleep issues?

As for the people in your life who are critical of your decision, keep in mind that they are concerned for you and that's a good thing. Spine surgery is a serious surgery and they are reacting to that, and also acting from a place of ignorance. I don't mean that in a bad way, just that most of us on here know more than the average person about scoliosis, AND the fact that we are living with it gives us a unique perspective. Only YOU can know what is best for you. Have faith in your decision and in your surgeon.

By doing this surgery now you have eliminated the years of potential debilitating pain AND your fusion will be shorter and your recovery time shorter as well due to your younger age. Those are all HUGE things to go into your PLUS column!

[Vali]

My curve was progressing at one degree per month. While initially it was not an easy decision, once it was made, i never looked back. If i could go back in time and had to make the decision again, i would still go through with it. My pain and progression has now stopped and i can move on with my life. JA, i think you have made the right decision, however, if you feel like this, maybe another chat with your surgeon may help to put any fears etc aside. I wish you well.

[jsully]

Jen,
My parents felt the same way. My Aunt has scoliosis and never had surgery and is 60 now. I really wish they had me do it at 15 when the DR suggested it. It took me 20 years to take finally decide to do it for myself as the curve and pain progressed. People also looked at me like I was crazy to put myself through this. I am not sure what other choice I had as I have tried exercise, injections and chiropractic and nothing seemed to help. Good luck with your decision.
You should do great if it is what you want to do Jaime. You are young and your curve is not too severe yet.
Janet

Thanks so much Jen. I am so happy to hear you don't regret the surgery even after the neck and walking issues. And its so nice to hear how much you're enjoying clothes shopping!

That's the thing about me - I've never really felt insecure about my curves because they're not too noticable. Just within the last few years I could tell my ribs are twisting a bit more but I know I would eventually be more self conscious as this worsens. I have always felt crooked though. I can definitely see the curves but no one else can.

I just can't help but feel like my case isn't "bad enough" especially since I'm not in a huge amount of pain. I felt it was the right thing to do for a good future but some recent comments on this forum have made me second guess myself.

Anyway, thank you again for your very kind words.

-Jamie

[JenM]

Hi JamieAnn-

I absolutley think you are making the right decision. I am assuming you are young like me. If I remember, you are in your late 20's? Everyone gave me weird looks too when I told them I was getting major back surgery. I was extremely crooked before my surgery 8 weeks ago, but I guess I hid it well since everyone told me they couldn't tell I had 2 humps on my back. I always wore larger shirts to hide my body. I always tried to be careful how I bent forward in front of people. To be honest, I felt really awkward within my own body. My own parents didn't think I should go for the operation since my grandma lived to 83 years old. THey told me (even with her 100 degree double curvature) that if she lived like that, I could! I couldn't believe that came out of their mouths. Throughout this entire process, I realize that none of my friends or family truly understand, even my husband. You just have to be strong within yourself. You made the decision, now just follow through with it. I exercised ALOT aerobically before my surgery so that helped with my anxiety about the surgery. I was also having trouble sleeping about a month towards the surgery. But then it got better because I just told myself I am doing the right thing. You just need to be confident about it. I also want to tell you, no one could have been more scared about the surgery then myself!!! I wanted to do this at 20 years old, and it took me 11 years to take the plunge. I was scared to death of the operation. But trust me, once they put the "happy juice" in your IV, you'll never know what hit you. You just wake up in ICU. It wasn't that bad as they really control the pain.

Even though I am still having neck issues and still in pain now at 8 weeks post-op, I would still recommend the surgery. The pain gets easier to deal with every week.

I am having SO much fun clothes shopping! I now wear a size small thanks to the surgery! My confidence and self-esteem has really sky-rocketed! All I ever wanted to have for the past 15 years was have a straight back, and it feels good. It's just a shame I have to have 2 long rods in my back! THe rods and hardware feel very strange and different, I think it just takes a year or so to get used to. I am still walking a bit strange, but I hear this will go away too in time.

Anyway, enough of my rambling. Best of luck to you and I'll be thinking of you on 9/28. If it wasn't for this forum, I probably wouldn't have had the surgery because I didn't have the support at home for it. THere are a bunch of GREAT people on here and I love to read everyone's posts everyday.

Keep posting as your date gets close. The people on here will help you to get through your last minute anxiety.

Take care,
JenM

Well I am already emotional tonight, but am so overwhelmed by the kindness and support on this forum. I truly appreciate your heartfelt responses. They really do help me a lot.

Thank you again ladies