New here- surgery 24th may- very scared

[kassie84]

Hello. I have been reading a lot of different posts and some have eased my stress and others have made it worse.. so I thought I'd write my own post and ask for any advice, encouragement or tips to help me prepare for the big day.
I am 25 years old and was diagnosed with scoliosis when I was 13. I wore a brace for 3 years until I was nearly 16 and that seemed to prevent further increases to both curves. I'm not sure the size of the curves and I'm very confused. I just looked at my old x rays which have measurements on them but it doent add up. In 1999 the lower curve measured 35degrees then in 2000 the top was 32 and bottom 36. But on a different cray it was measured at 42. Then in 2002 they were 30 &38. My current x rays aren't marked but doctor said they had gone past the threshold and are progressing and will continue if we don't fuse now. He has recommended we fuse from T4-t11 as this curve is causing the lower one. Hopefully that should ultimately straighten the lower curve naturally so that I keep some flexibility. There is no guaruntee this will work. If it doesn't then I will need further surgery. Has anyone been through something similar? My op is booked for 24th of may and every day I change my mind about whether I'm doing the right thing or not. I do have pain now. But It is managable. I just avoid standing or sitting for long periods-just mix it up. I keep fit, go to gym and swim. I don't wear high heels very much... Even though I'd like to... And I have changed jobs so that I don't stand all day or do any lifting... I've been very happy living like this and the only reason I've decided to do the surgery now is because Im planning on
starting a family in a few years.
Please comment on any of these things. I would love to hear from
anyone who can share their experiences- good and bad.
Thanks
Kassie

[rohrer01]

I don't have any surgical experience, but wish you the best. It sounds like the level of your fusion will leave you quite mobile. I'm sure that some who have already had the surgery will chime in soon. Think positive thoughts about why you are doing this. It always helps to be positive. (I've had other surgeries, just not this one).

[JamieAnn]

Hi,

Your situation sounds almost exactly like mine. I have a 46 degree curve (+/- a few degrees) and a surgeon here in NY recommended surgery to me about a month ago. I feel the exact same pain as you describe - I sort of avoid certain things but overall don't let the pain affect my life. I do, however, wonder won't the pain just keep getting worse if I don't do anything about it now?

I actually scheduled a second consultation with my doctor for next month because I'm having a hard time deciding on surgery. I'm 90% sure this is the right thing to do, but it's a scary thing to opt into.

It sounds like you're doing the right thing. But I also think that you need to feel a bit more confident in your decision. Can you schedule an appointment with your doctor to go through a list of questions or talk to some of his patients to ease your fears? I think the more you talk to actual patients and to the doctor you may get a better overall gut feeling. That's how I'm going to make my decision, at least!

Keep us posted!

[kassie84]

thanks for posting.. Jamie Ann- It does sound similar. I have spoken to my doctor a couple of times. 5 years ago, he said I would eventually need the surgery but cause i was young and fit he said we could wait 5 or 10 years. Whenever I was ready. I saw him 6 months ago, and one month ago- when we booked the surgery. Every time I speak to him, he makes it sound so easy and I feel confident about doing it. Then I get home, and people freak out when I tell them I am having surgery on my spine. Then they question if it is really worth it? I know they can't really talk as they aren't qualified and don't know much about it. But i start to question myself, whether Im just trying to take the easy way out. What if I do more exercises, and swim more, go to Chiro etc...??? Has anyone actually found they don't need surgery after all that? I dunno...

[diane2628]

My situation is very similar to yours. I had a brace at 13 for 2 years, with similar size curves, then started having some pain when I turned 30. I had a fusion from t3-t12 10 years ago.

I was terrified before my surgery. But it went just fine, and the recovery was very smooth. 10 years ago, they just did a posterior approach, so I didn't have two surgeries the way many people do now. I was in the hospital for 4-5 days, and stayed home from work for 3 weeks. By the fourth week, I was back at work part time (desk job). 4 months post-op, I went on a backpacking trip (light backpack, maybe 15 lbs)!

I had little/no pain after the first day or two in the hospital. After a couple of days at home, I was walking a lot, and while I was tired and sore, I had no problems at all. Now, it's been 10 years. I do have low back issues - it gets extremely stiff very easily, especially at night. But then again, everyone in my family has low-back problems. I also still have a curve, so I still have a shoulder blade that sticks out a bit more and one shoulder that's a curved more forward than the other. But those are mostly minor problems.

I'm telling you this because I know that when I was preparing for surgery, I read a lot of horror stories. I felt then, as now, that it's important to hear about the good outcomes too. You're young, you're healthy, your curves aren't nearly as bad as some, and the surgical techniques they use now are better than when I had my surgery. You're going to do great. As a friend said to me, just think of it as a long vacation, with a little unpleasantness at the beginning.

[kassie84]

Hey guys, thanks again for sharing. Diane your story has been very helpful with helping me relax a bit about everything. I've been reading heaps of posts too and I feel the more I find out the more confident I feel about my decision and the surgery. I have also been experiencing or noticing more pain recently. I'm not sure if I just notice it now that surgery is so close and it's all I really think about. But everyday Ive been going to bed early because my back is tight and sore and rest is the only thing that seems to help. It's really starting to feel like winter down here too which doesn't make it any easier.

Anyway, I'm almost starting to look forward to surgery. I haven't had a holiday in a long time. My partner and I Just bought a house in phillip island which is an hour & half away from where i live now. He is living and working there and my family also lives there. So after surgery I'm going to live with mum until Im ready to go and live in our new house. Which hopefully won't be too long. Mum can come and help me during the day if I need. So I'm looking forward to the rest...

I'd like to know how long it took people to get their independance again? I'm sure everyones different but still i appreciate hearing other peoples stories. Thanks

[jesscv]

kassie,
i am 26 but had scoliosis surgery last spring when i was 25. i was fused T2-L1. my main (thoracic) curve was 57 degrees at the time of surgery, and my spine was fixed in an S shape - with my lumbar curve @ 40 degrees. i mainly got the surgery because my curve/s were progressing 1-2 degrees every year, and i wanted to get the surgery "over with" as i knew it'd probably be in my future...and better to do it while still relatively young (easier recovery)! anyway, now, a year post-fusion, my thoracic curve is 17 degrees and lumbar 0. it was a TOUGH recovery, but totally worth it in my opinion. pilates has helped me a lot with regaining my strength/mobility. i have all my photos posted online of my surgery experience. let me know if you want to see! if you have any questions, feel free to ask.
jessica

[diane2628]

Kassie -

I read your post again, and it really does sound just like me. I had pain, but not so bad. My curves were similar. Mostly I decided to do it when I did because it felt like it was getting worse and I knew I was going to have more problems later, so I wanted to do it while I was young & healthy. In retrospect, I would have waited just a bit longer - but only because, at that time, they were pretty much just doing the posterior approach, not the anterior + posterior approach that they do now. My sense is that people who get surgery now get much better correction than I did, and the recovery is sometimes smoother too.

But I don't regret doing it - and like I said in another post, I've done everything from scuba dive to kayak to canoe to hike the Inca Trail to Machu Picchu and trek to 14,000 feet in Nepal (both times wearing a backpack) since my surgery.

I was single when I had it done, so I was glad I had people to stay with for the first 7-10 days. But after that, I was fine. The only thing I needed help with was lifting heavy things - I had to either only buy a few things at a time at the grocery store, or get someone to come with me.

You're going to do fine. Start a pool with your friends - bet on how much taller you'll get. That makes it a bit more fun.

[LynetteG]

kassie84 - I had my surgery almost six weeks ago, and my mother moved in to my house to help take care of my two sons (I'm a single mom). She moved out after the fourth week, and I've been taking care of my sons and myself since then, so I've been independent since the 4th week. However, I still get very tired, and sometimes need to take a nap during the day when I can, I'm lucky that my mum can sometimes watch my boys which allows me to get that nap in. I had a lumbar curve of 85 which is now 27 degrees, and my thoracic curve was 55 and is now 19 degrees. I'm very happy I had this surgery. I was also very nervous prior to the surgery, as I think everyone is, but once you've had it done, it's all behind you

[jsully]

Good Luck! I wish I had done this at your age. I was too busy starting my career and family so now 10 years later I am doing it. I do have a lot more pain now but do still manage very well, but the progression continues. I too want to get it done before getting older and the curve becomes worse and more rigid.
Janet

[ADMoul]

Just sending you good thoughts and best wishes. You can be glad you're doing this when you're young and healthy and that the surgical technology has become so much more advanced. When I was diagnosed back in the early 70's, surgery meant 9 months in a body cast so I certainly didn't go there. I was fine up until a few years ago when I really developed significant pain from the worsening curves. Good for you that you're moving ahead with this now! At your age, your recovery will be so much quicker and easier. Good luck!

[gmw]

Kassie -- hoping all goes well for you! My surgery is the 17th and I'm getting nervous too (and I'm 63!). From all I read and hear, the younger you are when you have the surgery, the quicker the healing. Hang in there. You'll do great!

Glenda

[kassie84]

thank you

THanks everyone for sharing with me, I really do feel much better about everything. I feel very prepared for the good, and the bad- which I will be facing over the next few months. But im getting excited now, rather than being scared like i was when i first posted on this site. So thanks everyone for replying to my thread but also for posting your stories on the site. I have been trying to read a bit each night when I can. My internet isn't that great, so it's been difficult- and I've been so busy the past few weeks with work and getting organised for next monday! But it has still helped me so much. So thank you everyone. I will definately post more after the op and let you know how it goes. I look forward to reading how everyone else's surgery and recovery go too. I'm sure we will have lots more questions for eachother once we are through to the other side.
thanks again, and good luck everyone!