Please Help, I'm a Newbie to NSF!

[HAnn521]

Hello Everyone-
I recently discovered NSF while researching for an article that I wrote about my personal experience with Scoliosis. (this article is posted for reading in Diagnostic Procedures)...Believe it or not, my last visit to an Orthopedist was 4-5 years ago...following that visit, I was told that I needed to seriously begin to consider surgical options b/c my curves had reached over 40 degrees. My family and I decided that since I was about to begin college, a whole new chapter in my life with a clean slate and I had no back pain, that we would forget about surgery until it was unavoidable...Well, today 5 years later, I have graduated, I'm 22, I have moderate back pain and I have no idea how badly my scoliosis has progressed! After writing my personal story and discovering this site, I have decided to face my fears and see a doctor to talk about surgical options and see where I now stand...
In 2000 I was told that the only available surgery for me would be to have rods placed in my back against my spine to stop progression (this is of course after I had already been braced for some time)...I was told that the rod surgery was my only option and that it would greatly limit my mobility and athletic ability...Now, as I read online and here, I see there are new options...new surgical procedures!!
Can you all PLEASE tell me about what type of surgery you had? What were you curves like and were that changed after surgery? Did your uneven hips/shoulders really straighten out? Can you honestly still move, flex like you could before? I mean, is it noticeable that you have had surgery and can't move your back in certain ways?
Sorry this is a long question, but I would greatly appreciate any answers or information you can give me...It's great to hear others like me talk about their condition.
Thanks!

[carebear23]

In the same boat..

Welcome HAnn!

Your story reminds me of me

Although I haven't had surgery yet I can say that this site is truly amazing. I have done at lease 50 searches since my first visit here about a month ago and still have questions! I am pretty sure that many people have written their surgery stories on here somewhere. I have come across a few. Don't forget to use the search option!

The people on here are incredible and you can learn so many new things each and every day. It's a true blessing that this site exists.

Also keep in mind that you can send private messages on here if you would like specific stories. I'm still getting used to all the things we are able to do on here.

Good luck!

[LindaRacine]

HAnn521...

While there have been advances in spinal implant surgery, unfortunately the only way to correct scoliosis curves currently is with rods. The good news is that some people are candidates for surgery on the front of the spine which can faciliate fusion of fewer vertebrae.

I have a relatively long fusion T4-L3 (12 vertebrae), and was pleasantly surprised that once I had recovered from surgery, I still had most of my flexibility.

Regards,
Linda

[sweetiepie3]

HaNN,

Welcome to the site!!! this has been a good source for a lot of people.I had scoliosis surgery when I was 13 years old and now I am 15 and almost 2 years post surgery. Right now the only treatment for scoliosis surgery is with rods. I feel that the surgery was the best thing for me. I do have some back pain on certain days but this is very little and probably less pain then you are feeling now. I am very happy and active. Please feel free to ask questions...every year I do a scoliosis presentation for 6th graders at my local middle school and I have found a ton of information so just let me know and good luck to you!!!

[HGD24]

Hi HAnn! I just had my surgery on Feb 1st of this year. Like you, I was told at 17 that surgery was my only option. My curves were in the 55-65 degree range then. I did not want to face surgery during college and held off on even really talking about it with a doctor until my yearly check-up at 29. It was then that I realized that I was losing height and the curves had progressed to 75 degrees. I had little pain associated with my Scoliosis, but the progression was the deciding factor for me. I also am very athletic, play co-ed softball, golf, rollerblade, etc. So the thought of losing mobility really scared me.

I'm happy to say that at 4 months post-op, I'm able to jog a bit around the house and can almost touch my toes again (I only do this in my doctor's office of course!!!). You really do adjust your movements to do the things you've always done, you just do them in different ways...usually the way you were supposed to be doing them all along (squating to pick something up off of the floor...not bending over to pick it up). I do have some stiffness in my lower back, but am starting PT to work on that. Other than that, I feel good and am back to work full-time!

Good luck with your decision HAnn!

[sidrid]

Hi HAnn,

Very smart of you to come here and ask us before deciding on surgery. The patients always have more info than the docs, because of the personal experience.

I had surgery in May 2002 at age 52. There is definitely one thing I tell everyone, if they need surgery, don't wait until you are past 50!!! Do it when you are young. The body heals faster and adjusts better.

I have titanium rods T-4 through S-1, quite long, and yes, it does limit my ability to bend, stretch, and do some things, like reaching my feet. Grooming my feet and putting on sneakers is quite comical. Also, can't sit in the bathtub, I must take a shower and usually use a shower chair. If I sit in the tub, I can't reach everything properly and I toppled backwards. Learning to manuever sanitary tasks in the bathroom is about the biggest problem I had. Also, I have a rather interesting squat instead of a bend when picking things up off the floor, etc. Depending on the length of the rods, you may not have the limitations I have.

The GOOD THINGS: I have NO MORE PAIN in my lower back. I was in such terrible pain I was totally useless for anything before surgery. Now, I can do things and am amazed at the end of the day how unpainful my lower back feels. My shoulders are even, or if not perfectly, close enough! I no longer have to struggle to make myself look straight. There is still a slight difference in my hip bones, and my backside is still a bit uneven, but since the rest of me has been evened out a bit, it doesn't show as much. I used to lose my balance all the time, but I have better balance now. I still tend to sway a bit sometimes, but I don't make strange circles or walk way off course like I formerly did. I'm also back to my original adult height.

YES, I can feel those rods in my back. Doctors tell patients they won't feel them, but HA, I know they are there. However, they were more bothersome in the beginning than they are now. Most people don't know I have rods unless I tell them. People who know are usually the ones who also have them or have close family members who have them. While my curvatures (I have three) weren't straightened dramatically, my doctor was able to get more correction than she originally thought would be possible. Only the lower two were corrected.

I'm not sure exactly, but my curves were about 40°, 53°, 55° before surgery. The curves are still quite high, but due to my age, we weren't going for correction but for stabilization. The corrections that were achieved were a benefit of surgery.

Good luck with your decision and your health. Glad you came here to ask us.

[HAnn521]

Follow-up and Thanks!

Thank you all so very much for your replies! I agree with Myrtle and carebear in believing that this forum is helpful and essential before deciding on surgery and for getting advice....Well, my update thus far is that I am scheduled for a consultation with Dr. Horton of the Emory Spine Center in Atlanta, GA on July 22! I am so nervous about finding out how much I might have progressed that I feel butterflies everytime I look at the 22nd on the calendar..and it feels so soon! I have been putting this off for 5 years and now I need do it before I make things worse on myself...
As you said Myrtle, I want to do it while I am still fairly young and not let nervousness keep me from helping myself early on...
I really would like to hear more from all of you reading this...so PLEASE post your experiences and answers (see questions in my first post of this thread) here also!! ...and I wish you all the best, as I will be keeping in touch about my situation...

[rachael]

Hello and good luck with your appt. Don't stress too much about it. I think I am much better off with my rods. I look at my grandma and think about how much better my posture will be when I am older. And other people have told me about their pain due to scoliosis and I don't have too much pain.
I had 2 Harrington rods put it in 1991 when I was 15 to correct 2 curves (68 and 47 I think). The rods corrected them to about 18 and 11, but did not straighten out my rib cage. This is partly because my surgery used hooks rather than screws, I think now they have improved procedure though.
The most limitations I have are that I can't touch my toes and it is uncomfortable for me to sit with my legs out straight in front of me (I am fused from T-4 to L-3). I used to be real flexible and a dancer, but can't do most of those kind of moves anymore, but as for everyday life I really have no limitations (except when they do some stuff in my yoga class!). I have found ways to adapt where my rods would otherwise cause issues, for example, I am a triathlete, and I have to tilt my saddle on my back at an angle in order to get in a more aero-dynamic position, where as others curver their back to get in this position...basically any time I have to bend over it is up to my lower back and knees.
As for my body shape...their is a very slight difference in my hips and shoulder, it is not noticeable with clothes on, and even in a swim suit, etc, I'm sure most people can't tell. I am a little self concsience about my ribs, which feels like a hump due to the twisting, but I think my imagination makes it bigger.
No would would know that I ever had surgery unless I tell them or they see my scar. Most of the time in yoga (this is when my lack of flexibility is most noticeable) their are many other people who cannot do the moves either we just look at each other an laugh.
Hope this helps some!

[debjonancy]

I had my surgery back in the dark ages (1976) and have not had one bit of regret. My recovery was a bit different--longer hospital stay without being able to get up. At 17, being surrounded with 17 lbs of plaster for 6 months made me feel invincible. I rode snow mobiles, played basketball and even tried to do a flip off a spring board. I almost broke my jaw on that one because I landed on my head! My rod has since been removed because it broke. I still have some limitations with the flexibility and have learned ways to adapt for "personal hygiene" issues! Over the years, the shooting pain in my hip from the bone removal for the graft and the nerve damage around the incision have disappeared, along with my memories of them. It's 29 years later and my back is better than ever!!
Best of luck!

Deb

[shelley]

Hi, HAnn,
I am also a newbie to NSF. I had my surgery in 1966 when I was 14 years old, although I first developed scoliosis when I was six. Dr. Harrington himself performed the surgery in Houston, TX. I didn't have much of a choice in whether I wanted the surgery, because the primary curve of my S-curve was already 87 degrees and I had a badly rotated rib cage. My primary curve was corrected to 42 degrees, but my ribcage is still extremely uneven. I was told that further correction was not possible due to excessive bleeding during surgery. Although I have the rods and my spine is fused from top to bottom (I don't know the exact length of the fusion; it was 38 years ago) I feel that I have led a relatively normal life. I was home schooled after my surgery for a year, but I graduated high school with my class. I earned undergraduate and graduate degrees, traveled considerably, worked in my profession, married and raised a family. I was fortunate not to have any problems with my back over the years, other than some low back pain which disappeared after I stopped wearing high heels, and bras which continually dig into my side and protruding back.
After early menopause at age 46 and a stern warning from my gynecologist, I began to exercise and eat a higher calcium and protein diet. I started my exercise program by going to a physical therapist and showing him my xrays. He worked with me on developing core strength, overall muscle conditioning and balance (due to the rotated ribcage). Eventually I "graduated" to a regular training program at our local gym. I work out three times per week with a wonderfully patient and highly skilled trainer who has come to understand my issues. The training program has various components and includes weight training, balancing exercises and lots of stretching. I have been fortunate not to have injured myself and only needed a couple of Advil, on occasion. While my ribcage is still uneven, the muscles in my arms, legs, shoulders and core have been strengthened so that my clothes fit better now than at any time in the past. In addition, the gym program provides opportunities for goal setting and goal achieving which has improved my self-image (even at the ripe old age of 52). This is a broad summary of my experiences, so if you have any questions, I would be happy to answer them (Such as, yes, I can bend over and touch the floor with my fingertips).
Good luck and let us know what you decide.

[spincon58]

HAnn,
Hi, I just reached my 1 year anniversary.....I had surgery because after I had my children, my back slowly started to shift...I always had back pain in my 20's //.and.all the way till I had my surgery at 46..I lived in constant pain...My advice to you...don't wait...don't live in constant pain...if your curve progresses and you have moderate pain...seek out professional advice from surgeons....make an informed decision based on knowledge...I have good flexibity and I have mild back pain when I over do it...but I am much better than I was before....hope this helps.....