What If It Goes Wrong?

[rincotato]

Hello I'm Clare, I'm 18 years old from England and have an S curve both curves are about 50-60 degrees (something like that anyway). I don't really get any pain except when doing domestic things like vacuuming or something! But I've been contemplating surgery for about 3 years now because I absolutely HATE the way it looks. Obviously nobody is perfect, but it's a lot harder to except a deformity so I am down about it quite a lot and I've been thinking about trying to have surgery this summer. I've been leaning towards having it, until last night when i started to have doubts.

Basically, I always knew there were risks, even though they're small, they're still risks and now I'm really worried. My dad and sister don't really think i should have it, and my dad thinks that when I'm older I'll be able to except it and therefore thinks I should wait a while before having it. I'm worried about how I'd handle things if it did go wrong, because I seriously wouldn't be able to handle it!!! My sister told me to research into when surgery goes wrong, but it's hard to find stories of it going horribly wrong, as I guess people don't want to write about it. I've never had surgery and it's such a hugely invasive surgery that I just don't know what to do anymore.

My primary reason for wanting the surgery is to improve the cosmetic side of things, so I don't know if its right to even consider surgery but I can't help the way I feel. My dad thinks I have lots of other things 'going for me' so to speak like brains, good looks, blah blah blah, therefore I shouldn't need surgery to improve myself, but he doesn't understand how seriously it affects me not physically but emotionally. This may be a bit strange, but I'm very reluctant to have a boyfriend or anything because I don't want people to get too close and discover my faults and I'm just really not confident enough about myself to handle a relationship, so I always shy away from people that actually do show interest me. I realise this is very sad! My dad says that if I don't have the surgery I'll have a good quality of life, even though I may be unhappy with my looks, but if I have the surgery and something goes wrong then my quality of life will plummet and I'll end up regretting having it at all. I don't don't want to regret having it, nor do I want to regret not having it.

It's the most difficult decision I've ever had to make! but I don't NEED the surgery, so am I just causing extra stress for myself by even considering it? I'm just unhappy at the moment and maybe I will feel better about it in the future but I can't see that happening just yet. To sum up, I feel like I've gone back a few stages with my decision as I'm now very unsure. I'm considering waiting one more year and then seeing how I feel. Then I could have the summer with my friends on holiday which is great, but then I wouldn't be able to wear a bikini or any summer clothes on the holiday so thats bad, so I'll regret NOT having the surgery!


As you can tell I'm EXTREMELY confused and I'm probably not being very logical at the moment. But i don't talk to anyone in depth about my feelings so it all comes out on here!

I NEED ADVICE.

Thanks (sorry for the HUMONGOUS RANT)

-x-x-x-

[sccrm08]

Rincotato

If your curves are 50 - 60 degrees there is a good chance they will continue to progress. You may want to have x-rays done again in 6 -12 months and see what the rate of progression is. If you have the surgery now, you may get a better correction than if you wait till your older. It is not an easy surgery, but I do beleive the younger you are the easier it is.

I'm sure you'll get lots of oppinions here, but in the end the decesion is yours.

[suzyjay]

Tomorrow I will be 1 year post op. If you’re not in any pain, wait, and surgery is the last resort. What can go wrong - I was told there is a small percentage of getting an infection or having to go back into surgery if the bone doesn't heal. Well both happen to me, I got a staph infection it wasn't found until 4 months post op so I was in a lot of pain and the doctor couldn't understand why. Finally I got test done and the infection was is on my spine and on the hardware. The infection will not go away until the hardware is removed. (Staph hangs on to implants) I am still on antibiotics and have been on antibiotic & IV antibiotics since June. Also after surgery my lower back became slightly flat and I the rods are sticking through my back, my doctor said he would have to go back in to fix it, that was before he found out I had the infection. So I will be going back into surgery to remove the hardware and the flatback will not be fixed because it grew that way and to fix it I would need implants and I can’t get new implants because the infection will attach itself to the new hardware. Hopefully my bone has fused solid and the so the curve won’t return once the hardware is removed. I went into surgery strong and healthy and now I have been sick for a year. For cosmetic reasons – my hump didn’t go away completely it looks better. My lower back hump is smaller and the as for top, my wing bone sticks out and I never had that stick out before. I had the chief of spine surgery do my surgery at NYU Medical Center, one of the best. Nothing is guaranteed. It is a long painful recovery. The worse that can happen, dying during surgery, paralysis, bladder problems and much more, small percentage, but who knows if they are the 1-2 percent that will be problems.
Sue

[rincotato]

yes you're right, i guess u should just wait until i really need it if ever. I just worry that i'll need it when i'm like 40 and in pain and then it won't have very good results. how old were you when u had your surgery suzy-jay?

-x-

[Susie*Bee]

rinc: May I suggest slowing down your decision making--one way or another-- for the time being? You sound like you're going a mile a minute and flip-flopping all over the place! Take some deep breaths and then try to understand that your scoliosis isn't going to do anything drastic overnight. You probably need to get more information from scoliosis specialists before you decide whether to have surgery soon or to wait longer--or to not have it at all. The more information you (and your father and sister) learn about scoliosis, the more you'll understand your own needs. There are some good books out there, and we can recommend some if you are interested.

In general, if surgery is going to be needed in order to stabilize your curve (and no one will promise that you'll be totally straight and unblemished), younger people have better corrections and shorter recovery times. The straighter looking back is a nice perk. There are some postings that include photos of young people's super looking backs... Problems are a potential with any age. But I remember signing pretty scary sounding releases when my daughters had their wisdom teeth out also. This is a big surgery--not to be compared with wisdom teeth, but there are risks for just about anything.

As for "when" to have surgery, here are some things to think about. It will take a chunk of time out of your life. You need to think about when that chunk would be best--before you start college, part way through, after you get married, etc. There really is no good time, so it may be a matter of picking the least inconvenient time, looking at the big picture of your life. If you find the December surgeries thread, there were some young gals that had theirs then and you can see how that went. Both vndy and nzgirl would probably be glad to answer questions. There was also a girl from England that had surgery around then too--although I think it was in the fall. I can't remember her name, but could probably figure it out.

If you wait till you are MUCH older, (as in 40s, 50s, 60s), then the going gets much harder. We don't bounce back quickly. It takes a long time for our recovery. Some of us have arthritis and other problems that complicate how we feel also. Even at these ages, when you think we don't have a lot to do that's fun/necessary, etc., the surgery really cuts into our lives. Many of us have had to put jobs on hold, etc. When you're in your 30s and 40s, there are children needing you as well.

Some people bounce back quickly anyway--their bodies allow it and they have super fighting spirits. Every one is different--and it depends on how extensive the fusion is and how your body deals with it--and like suzyjay, what complications might occur that no one planned on.

My suggestion is to see some more specialists, try to learn all you can about scoliosis and its treatments, and then based on the doctors' recommendations and how you (and your family) feel about it, you'll be able to make a good decision. Best wishes as you begin this adventure! And keep in touch!

[rincotato]

thank you for your reply

I feel I've done a lot of research over about 3years or so into the surgery and options and things, it's just the actually decision making process that is causing a problem for me at the moment. I've read a lot of books, talked to 3 people in my area and someone who has had the surgery done by the same surgeon who would do my surgery too! If there was more research to do I'd be glad of it because that would delay having to actually make a decision if you see what i mean. I just feel as though I will never decide and that perhaps it's wrong to go through such an invasive surgery for cosmetic reasons. I don't know if scoliosis will cause me problems later, or pain, all I know is that right now I'm unhappy and have been for quite some time. At the moment I'm trying to look at the downsides of it, as suzyjay was unhappy with her operation, but the majority of people have been happy with theirs.

argh! i just don't know anymore and I thought i wanted to have this surgery until just yesterday!

-x-

[Susie*Bee]

Sorry!

Clare--sorry I jumped to conclusions! It sounded like maybe you didn't understand things that well. Good for you for doing some research! I guess my next question is what the specialist(s) have recommended then... are your curves progressing? What do they say? I know this is all very confusing and hard to deal with. Again, there are risks with anything. But sometimes those risks are worth the gamble, if it's your quality of life that's at stake. So again, it depends on whether or not you really will need the surgery in the long run. Best wishes for figuring it out.

[rosie1108]

I did not want surgery at first

Hello, I hope I can offer you some help by sharing my story with you. I am currently 22, and I had surgery 6 weeks ago. Today I saw my surgeon. One of the things he asked me is: "are you happy you had the surgery?" and I was able to quickly and honestly tell him "yes, absolutely."

I was first advised surgery when I was 14, but my parents thought it was a bad idea. Basically, we just never scheduled the surgery, and no one called us about it either. Over the last year, I have noticed that my curves had been getting worse, I would feel "weird" sensations in my body, not always pain, but I could feel myself getting shorter, and I too was concerned about the cosmetic aspect of the condition. I had been seeing a chiropractor for several years, which kept me mostly pain free, mobile, and doing all the things I love. I actually began chiropractic college last winter, an the more I learned about scoliosis as a student becoming a doctor, the more I worried about my own condition.

I too worried about all the possible poor outcomes of the surgery, but I did not know about the possible poor outcomes of NOT having the surgery. Some of the doctors at my college were asking me about my experiences with the condition, and I realized that I was having more problems than I would admit to myself. I was limited in my range of motion, I had some lung restriction problems, I had some digestive issues like my stomach got upset easily and I would get flashes of nausea especially after some movements.

After a while, I decided to go see a surgeon, and see if my back was getting worse, and if I would be a good candidate for the surgery. I went online, and started doing research on well qualified surgeons in the area I was living in, just south of San Fransisco, in California. After I talked to the Dr. there, I started seriously considering if I was ready to undergo such an endeavor. I knew that there was a possibility of paralysis, life threatening infections, muscle weakness, numbness, tingling, excessive blood loss during the surgery, and in rare cases, death during the operation.

I finally decided to not think about it, and just focus on school for a few weeks, and just see how I felt about it. Once I stopped thinking about it, I felt an inner calm come over me, and I just knew deep inside that I should go ahead with the surgery. Along with this, I decided to go back and stay with my parents in Seattle Washington for the surgery and recovery.

Now for the Surgery: I had a number of things that didn't go perfectly.
My surgeon expected that my surgery would last about 5 hours, but it lasted more than 8. He expected I might need a unit of blood, so I donated one a few weeks beforehand, but I needed 4 units of blood and 2 units of cells during the surgery, and 2 units of blood in the coming days.

Because I am young, I feel like I have bounced back from the surgery pretty well, the last 6 weeks have consisted of me laying on the sofa, sitting on the sofa, reading, surfing the web, going for walks around the neighbor hood, and other short errands. I still have 3 large areas on back, side and hip that have diminished sensation, I cannot perceive light touch, but can feel pressure over the skin. My surgeon and I do not know if feeling will ever fully return to those areas, I hope it will, but only time will tell.

There were times leading up to my decision about having surgery that I felt a little depressed about my condition, and sometimes about my future. Like you, I wondered what my life would be like in 20 years if I do or don't have the surgery. I STRONGLY believe that many of the women on this forum are testament to what my life will be like in the future, I definitely believe that surgery was inevitable for me, and my opinion is that it will be for you too. With your degree of severity, it will almost certainly keep progressing, but you should not have the surgery until you are sure that it is right for you.

Please do not hesitate to contact me personally if you want to discuss this further, see pictures of my back and/or x-rays, or if you have any questions for me.

Roseann

[crepehanger]

hello Rincotato-

I have such a hard time conceiving how much curvature you have, to only be 18. And to be unable to vacuum without resulting pain? You will know when the time is right, sweetie. Pain will lead you to the right answer, it can become quite unlivable. These intelligent members have put it out there quite well, and I agree, don't do it until you're ready. Most of us had no real choice. We had to either have the surgery, or let pain and disability steal our lives. Best wishes to you and keep your chin up, dear, we've all been there.

[Angelacross]

HI I am 20 from the Uk as well my op is planned for sometime in the summer, i am having mine because it is still getting worse ten degrees in three years, when i first got told i had scoliosis i was checked every 6 months this was from the age of 17, and because it was getting worse i was offered the sugery last September, and im the same as you im starting to worry about if things go wrong etc.

If i was you i would wait and see if it is getting worse, there is no point going through any of this for cosmetic reasons I know i was the same i haed the way i look but when i was 19, i thought different and thought so what im diff from people, i wasnt going to have the surgery i was going to stay the way i was.
It is very big and a long time to recover so think very carefully about it its a big step to take.

All the best.
Angela
xx

[jillw]

Just a thought....if I understood correctly, if you did decide to get the surgery there is a long wait period until they can get you in? Maybe a year or so? If so, is it possible to get your name on the list to be scheduled for surgery - you could always cancel, but it would give you a year to consider the pros and cons and even have another xray to see if it is progressing which might help you in making your decision?

[CStadler]

I know how you feel about not liking your body. I could never wear anyting tucked in and always looked different than other girls. As hard as it was I don't regret not having surgery before now. I was able to have 4 children and do a lot of activities that I know I won't be able to do now. At 18 you have so much living to do! I too was uncomfortable about new relationships but if someone loves you they will love you for who you are not how you look. I never met a man that was concerned about how I looked naked. Ask yourself this, would you want to be with someone that shallow? It was always worse in my head. It is only your perception of yourself that is stopping you from being in a relationship and I urge you to get some help to learn to love the wonderful person you are. You will be surprised at how confidence attracts people to you.
I do agree that you should be checked, see how quickly this is progressing and keep up on it. I believe when the pain becomes unbearable then you will know the time is right.
Good luck you are not alone in this. Carol

[suzyjay]

Rincotato

I was 44 yrs old, I know 44 isn't young, but my doctor said I was very flexible so I should have a good correction and I was in good shape (I worked out every day) so I should have a fast recovery. I had scoliosis since I was 12 yrs old and was never physically bothered by it. Growing up I was very self conscious about my bump so I know how you feel, I was always afraid someone would touch my back or notice the bump, I had two one on top and the bottom. My daughter is 14 and has scoliosis and wears a brace since she was 12 yrs old (16 hours a day, so she doesn’t wear it in school). She has a small curve and has a slight bump but she said she doesn’t care about it, all of her friends know and it certainly hasn’t stopped the boys from wanting to date her. I wasn’t lucky enough to get a brace when I was young, my parents ignored it. Stay active and strong.

Sue