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kkshadow
05-27-2006, 09:37 AM
Hey! I'm new to this forum. I have known that I have scoliosis, since I was about 15.
I am now 31 & am in pain every day. But, some days are worse than others. I have an appointment in Tennessee next month to see a Surgeon @ Campbell's Clinic.
When my parents took me when I was a teenager, they wouldn't do surgery. My curve is in my neck & my upper back. But, the surgeon, at that time, said the surgery would be too risky. But, I wasn't in pain @ the time.
I am in pain now & want to see about having something done.
I want to hear different people's opinions, that have possibly had surgery and if they have any regrets or not.
I've started reading David Wolpert's 'Scoliosis Surgery' & it's very scary sounding. Such as, you may have it & not be any better off.
:o :confused: :eek:

summer
05-28-2006, 09:07 AM
I really won't know if my surgery was worth it or not for a few more months. You really need to know what degree your curves are. I read his book too and although it was scary I felt well educated and prepared.
I made my decision because I was having X rays every other year and my curve kept progressing and would continue to progress, if I didn't do something about it. I didn't want to be 50 years old with an eighty degree curve. I want an excellent quality of life and giving up six months or so now seemed worth it to me.
good luck

edejkeller
05-28-2006, 01:46 PM
Hi,
I am getting this stuff done in a couple of weeks and agree with Summer. I have pain- but not so severe that I can not function (at the moment). If I wait- it will get there.
Every decision like this is an individual one made between you and the surgeon. No one will tell you what to do- but it is important to ask the surgeon what the advantages are for waiting and what the disadvantages are for waiting. That will help with your decision making.
Eric

Cakedec
05-28-2006, 03:27 PM
I didn't want to be 50 years old with an eighty degree curve. I want an excellent quality of life and giving up six months or so now seemed worth it to me.
good luck

Hi Jenn,

I am the (almost) 50 year old with almost an 80 degree curve (75 lumbar) and I agree that now (at your age) is the time to have the surgery done. I wish that the surgery would have been available to me at your age, but 15 years ago the surgery that they were doing is not as good as what they are doing now. I wasn't in constant pain then, although it was steadily progressing or disabled from working like I am now, so in my case waiting to have the surgery now is most likely the best thing. (Sometime this year) I also consider that it will be an investment of time (and pain) in order to have a better quality of life in future years and on into retirement and not to be crippled or a burden on my family.

But then there is the other side that you hear of--the people who are left with worse pain, infections, and repeated additional surgeries. I have read the stories of people on this forum who regretted having their surgeries, were left with twisted torsos, had to have hardware removed, etc. so the decision is still very scary and difficult. It is kind of like throwing the dice to see which side you will land on. None of us can see into the future and probably it is a very good thing. The surgeons cannot give any guarantees other than that they will do their best.

Thanks so much for sharing your journeys, as I will be.

Deb

Suzy
05-28-2006, 03:56 PM
Well I have become an adovcate for the "get it done ASAP" side not "wait till you can't function side" since I had my surgery 3 months ago. My curve was progressing almost 4* per year. (1* is more the norm) Being youngish (43) and healthy also helped me make my decision. The clincher was the pain was affecting my way of life. Oh I could function, but for shorter times and with more meds. I am very active and was getting worse fast. This is a huge decision because you will give up some of your life recovering from this surgery. However the pain does lessen instead of increase. You will hear both the good and bad results and it will help to inform you in your own decision making. Actually alot of the good result people seem to fade off this forum........ (So I've been told, and have started to notice.) Eric, I've answered alot of your questions in previous posts. You can see a pattern of PRO-Surgery and WHY if you read back a few. kkshadow, I asked about different opinions before my surgery too. What I did was read back as far as the posts went, looked at ages, curve % and results and compaired to myself. I figured if I ended up with average results I was going to be happy. Plus, talking with your Dr. as to the results you might get will help. Any other questions, I'm happy to help. (You can send me a note!) I didn't read David W's book as I heard it does scare patients..... This forum I found out is a wealth of information. I was such an informed patient by the time we scheduled my surgery my Dr. was impressed. I was able to ask specific and pertinent questions and understand Dr. language! Best wishes.

kkshadow
05-29-2006, 04:52 PM
Thanks for the opinions!! There are just so many things that could happen. But, the more I think about it. The Good things outweigh the Bad things. My appointment is June 16th & I'm going to make me up a list of questions to ask the Dr. My husband is going with me & he's always full of questions, things I forget about.
I,too, don't want to be 80 or so & be on so many pain pills & never have good days. I do have some good days, every now and then. And, I also joined the local hospital's wellness center; along with my husband. I'm hoping exercising & losing about 30 pounds, will make me feel better. I want to have just a little bit of extra cushioning, even though my cushioning is my gut.
Thanks again for the comments & opinions, and I will let you know what the Dr. says. And, I'm also only half-way through this book.

Thanks,
Kim aka kkshadow

sweetness514
05-29-2006, 06:50 PM
There is not a magic answer that can be said, some people have great outcomes, some not as good, some have ups and downs. As for me, I'm glad I waited as much as I did to get surgery(I was supposed to get it at 18 but left hospital and waited to be in some pain at 26), and even if there was a good correction, I did end up with a non union and hardware breakage and pain, and have aditional neck pain/stiffness-wich can happen at any age. I also used to be highly flexible before the surgery, and am nowhere near as flexible now, and have to sit straight all the time, etc. Some days I regret not waiting a bit later to enjoy those days when I wasn't fused, and others I see that I did wait to get it at a good age, I did have a 60 degree curve, some daily pain and only had to get posterior since I was still young. Recovery was long and hard b/c they didn't give me pain killers after one month and so I highly recommend you don't go that route and get some pain relief, that way you can move and walk more.

Since you're reading David K. Wolpert's book at least you know all the risks post op even down the years(wich I wish I had known and had the priviledge to read and visit forums then), and you know it's a leap of faith and how much pain you're willling to take before having the surgery, so good luck with your decision.

JoAnn5
05-30-2006, 09:50 AM
Hi Kim. Nice to see someone else from Tennessee on here!! I had my surgery this last October at Centennial Medical Center in Nashville... My surgeon was Dr. David McCord. He was good and Centennial is absolutely great!! His office staff is very caring and sweet as well. Where does your dr. perform surgery?

kkshadow
05-30-2006, 12:44 PM
Hey Judi!!
Actually, I'm from Tupelo, Mississippi. Memphis is about the closest place, that has Scoliosis Specialists. My parents took me to Campbell's Clinic, when I was a Teenager. I'm gonna go back & see what they say. But, I will probably go for a second opinion. This particular Dr., Dr. Williams, performs surgery in Memphis @ the Baptist Hospitals. I just might consider Nashville. I could spend the weekend there & have fun, as well. I went to Nashville on my Honeymoon in 2002 & had a blast.

kkshadow
05-30-2006, 12:52 PM
Hey Sweetness,

I don't have very much flexibility, as of now. I joined our local Wellness Center, Friday & my flexibility was horrible.

I was also wondering if everyone that is looking @ having surgery or has already had it, if you work full-time or not.

I do work full-time & some days; it is really hard, especially with the work load that I have. I am the Lab Manager @ an Optometrist's office. I make more than half of all the glasses. Some days, I would love to call in; but I just make myself go on & work. Sitting @ home, doesn't make me feel any better.

I've also been working @ the same business for 9 years & the benefits are good.

sweetness514
05-30-2006, 01:49 PM
If you already don't have much flexibility it won't affet you then, and you won't see that much difference.

As for work, I personally couldn't get back to my standing up and physical all day job afterwards, since as I said I had complications, more surgeries and pain. Sitting down at a computer or doing both(alernate standing and sitting) is easier for people. Before my surgery it was sitting down that I couldn't do versus standing wich didn't used to give me any scoliosis pain, but sitting wasn't my job so it didn't matter much.

Some very fortunate people with great outcomes go back to very demanding jobs. Again it depends on the outcome and every case is different.

kkshadow
05-30-2006, 05:43 PM
Hey Sweetness:

My job involves me standing up all day long. Sitting @ a computer or desk hurts me. My back has more spasms & hurts worse, than standing up all day. But, standing up hurts me pretty bad some days. Between my shoulder blades, my neck & my left shoulder are my painful spots.
A month or so ago, I had taken another job; that would involved me sitting at a desk for about twelve hours at a time. My current boss talked me out of the job & plus the job would have been working 7:00 p.m. - 7:00 a.m. for less money.

sweetness514
05-31-2006, 02:01 PM
Yeah, I did work one day at a desk before surgery as well, and the pain in my curve and neck was HORRIBLE. Sitting straight before surgery was such a pain, and mainly the only problem for me, where standing hurt only my lower back a little that was after very long days.

After surgery, it's sitting that is much easier.

Hope you find a good doctor and make the right decision for you :)

kkshadow
05-31-2006, 02:50 PM
Thanks Sweetness:
I'll let you & the others know how my June 16th appointment goes. It's just a big decision to make. I'll have to pray about it & see what the Lord says.