View Full Version : waiting in fear

03-04-2007, 07:26 PM
Another new person full of fear and angst...
I have just scheduled a surgery for fusion of the thoracic. I have an "s" curve of 60T and 40L. Due to the flexibility of the lower curve, my doctor feels it is best to fuse only the top, and the bottom should fix itself.
I have been reading all of your comments trying to get a feel for what I should expect and everything sounds so dreadful! So many people with broken rods, second surgeries and pain. This has made me second guess this decision and I am looking for some comments from people with positive experiences. How common is it to break rods? To have revision surgery? I am 26 years old and although my curves are quite large, I just don't know that this is right for me. I have never had any sort of surgery, and the idea makes me quite ill. Even the word "blood" makes me woosy. I just want to be confidant with this decision and know that I will be better off.
Has anyone see Dr. Roth in Michigan? Thank you.

03-04-2007, 08:08 PM
Hi Azalea...

One of the down sides to forums like this is that people who have great outcomes aren't nearly as likely to post here than people who have bad outcomes.

According to recent research, non-fusion (which results in broken rods) happens about 17% of the time in adult surgeries. Dr. Roth's percentage could be better or worse, so it's best to check with him. In terms of what percentage of patients need revision, I don't think anyone knows that yet for the current generation of scoliosis implants. Again, checking with your surgeon is going to give you the best idea.


03-05-2007, 05:47 AM
I am 6 months post op and back to work full time. I was in constant pain before my surgery, having to take paunkillers just to get through the day. Everyone tells me my face looks so much better, I guess it was the look of pain that is gone. It was not easy but it was well worth it for me.
I am not 100% yet but I feel much better than before. I still think I will improve. I still am stiff. I haven't quite gotten used to the feeling of the rod and I still get tired easier.
I suffered in pain for a long time due to my fear and now I wish that I had done it sooner. Good luck.

03-05-2007, 07:18 AM
Hi Azalea -- Fear and angst? Bingo!! All of us waiting for surgery are scared. I think we would be abnormal if we weren't scared. After hanging around on this forum for a while, though, I've noticed that people tend to get a lot calmer right before they go in, and seem to feel ready. That's what I'm banking on, anyway!!!!

Anyway, you're in good company. ;)

03-05-2007, 01:00 PM
I had a great outcome I am three months out and after two weeks was off pain meds. by 4 weeks I was back in school and working, and I feel fine. I am very happy with my surgery. Nothing is ever perfect and nothing is ever 100% but the key thing to remember is it is only going to get worse. You spine will start to degenerate and your curve will only get worse. With the surgery you will be better off then you are now.

03-05-2007, 02:17 PM
Hi Azalea!
I'm having my surgery April 17 and 18. They just called me this am to ask me to be at the hospital at 5:30 am 4/17. Now it's real.
Just wanted to share with the group an experience I had on Friday. As I have posted in the past I am a wildlife rehabber (now on leave but still taking some birds home for care.) In fact my first baby dove is home with me for care! While at the hospital one of our volunteers was working the am shift and was wearing THE BRACE. She had P/A surgery last summer at UCSF. She looks terriffic! She is back volunteering and is doing really really well. It was so wonderful to see and talk with someone face to face who has been through what we face. She is 53 and looks 40! I felt reassured and hope this may help some of you too!
Julie B

03-05-2007, 03:18 PM

im now 7 months post op and it has changed my life.

i am now in no pain whatsoever and i feel great in my new body with my new hieght.

im not at work yet but this is a personal choice rather than anything to do with the scoliosis.

i know not everyone has positive experiences but you have to go into the surgery thinking that you will.i chose not to find out too much info about the surgery before hand but that was just my way of coping with things but i am on this site to help people that have chosen to research, so if you have any specific questions please feel free to ask or pm me.

hope this helps


03-05-2007, 06:33 PM
Thank you for all of your positive words. It is nice to know that it is okay to be scared. I spoke with my old college roommate the other night about this, funny I didn't call her before. She had a full spinal fusion when she was 13, and has only wonderful things to say. She laughed at my fear, not because I was being silly but because she remembered how awful it felt to wait. She is so happy and content with her surgery, it was very reassuring. In fact, she didn't even know it was possible to break a rod! I know every individual has a different outcome, I just hope I will be smiling. I certainly am not "ready" but I feel comforted knowing that there are positive outcomes. Thank you.

03-08-2007, 12:41 PM
Hi Azalea,

I am one of the post op people with a positive outcome. I will tell you it was the best decision I ever made. I am one year out and doing great. I was 43 when I had my surgery and was fused T10 to L4. The initial fear is from not knowing what you are facing or how it will turn out. Read as many posts as you can and you will see more and more how well this surgery has changed most peoples lives. Unfortunately, like Linda said, the people with good out comes disappear from the site. Read my previous posts and you can see how great this surgery can be. You may not be ready now but, you don't need to be. This is an elective surgery. If you get to a point where you are tired of the pain or your curves effect your breathing then you might be ready. You also need to be ready mentally. A positive attitude is extremely helpful.

03-08-2007, 05:36 PM
Thank you, Suzy. You posted at just the right time. I scheduled my surgery today - and I can hardly breath from fear. I still don't know if it is the right time or thing for me, but I am a step closer. I have noted that I have never been positive about anything in life, and this is especially difficult. I can hardly function at work, not out pain but fear. My mind is on only one thing. My decision to do this was based on exhaustion - I am tired of hearing about it. Year after year this option is presented to me, and year after year I ignore it. I do not want to ignore it too long, I want the best outcome possible, but I know KNOW I am not ready for what is to come.

03-09-2007, 07:23 AM
I had my surgery 32 years ago when I was 16. Because my father was in law enforcement, I did not take ANY pain medicine after three days of morphine in the hospital. I was taught relaxation techniques, both yoga and biofeedback, to control my pain as aspirin was my only other option. My daughter used a few pain pills when she got home from the hospital after her surgery almost three years ago. The strongest thing either of us take is ibuprofen for pain. I also use heat to soothe my pain. A lot of how you deal with the pain is mental, being in good physical shape before the surgery, and how quickly and determined you are to get back to 'normal'. Good luck with your surgery. :D

03-13-2007, 08:18 PM
I, as well as everyone else, completely understand what you're going through and we've all been there! I'm 25 and I just had surgery in early January. I was TERRIFIED! I found out in September I had to have it so I had 3 months agonizing over it. I can tell you this- I would do it again! I'm 9 weeks post-op and the worst part of the recovery is that I'm having withdrawal from the pain meds. I too, become woosey when I even think of blood. When you're in the hospital, they take such great care of you. My pain was managed, and I was comfortable. Also, the meds have an amnesia-like effect, so I don't remember much at all! I have no negative memories, everything I remember is great. I'm feeling better every day, and the thought of a pain-free life at the end of this recovery is beautiful!
I would definitely recommend surgery if you are experiencing pain. I was also told that my curve would continue to get worse, and since I'm young and kidless I decided to get it over with! I imagine going through this with young children would be much tougher. I have noone to take care of except myself! It's normal to be scared- I believe, for me, it was worth it, and the anticipation was far worse than anything....
I hope this helps you!

03-13-2007, 08:21 PM
I just read your other posts...and my college roommate had this done when she was young too! How funny...