New to the forum - not new to scoliosis

[doodie]

Hi! Thank you all for being here – so glad to have found you! I’ve been reading your posts here for a couple of months and have found them to be so helpful! (and so compelling too ) Thanks all of you for your generosity in sharing your stories and opinions, your expertise and positive outlooks on life. I’ve found the right place!

My background: first diagnosed in 1973 at age 12 by family physician. ‘Watch and see’ for 3 months as thoracic curve progressed to 43*. Dr. Harry Kroll of Topeka, Kansas was my orthopedist at the time and he recommended surgery but my parents did not feel comfortable with that option for me so I was fitted for a Milwaukee brace which I wore 23 ½ hours a day for 4 years then gradually increased hours out of brace to about 8 by the time I graduated from H.S. Had a hard time adjusting to sleeping without it so took it to college for the first semester. Curve diminished to 33* – 36* while in brace (but within a few years curve back to 43*.) Dismissed from Orthopedic care fall of 1979.
Over past 25 years have received chiropractic care at various times and it has kept me going. I thought I was doing enough to take care of myself and thought my curve would just stay the same. I have always been active and have not let my scoliosis be much of an issue as far as how I have lived my life and what I can and cannot do….until recently that is.
I did not see a dr. specifically for my scoliosis until this May, although I have always had yearly physicals and list scoliosis in my medical histories…. I have always had back pain issues, (I just deal with ‘em) but over the past year overall my various pains have ratcheted up and I was feeling a little desperate (not to mention like an 80 year old) – desperate enough to make an appointment with a general orthopedist. I went there with a request for pain management of some sort – specific exercises or some other sort of NSAID (besides Aleve) or epidural, so she sent me for thoracic x-rays and when she looked at them (all of 5 seconds) she turned to me and said, “You need to have surgery and you should go to Johns Hopkins – you should do it now. And I’m really sorry but I can’t help you.” Yikes. I asked her about a possible epidural and she said I have multiple issues at multiple levels and a shot wouldn’t do any good. I promptly made an appointment with an orthopedic surgeon to get a 2nd opinion. More x-rays but this time I had both thoracic views and lumbar views taken. This Dr. spent about 20 minutes with me doing a thorough exam and when he measured my thoracic curve I was stunned to hear that it had increased to 60* and I now have a 52* lumbar curve as well, (and I believe increasing rotation) which probably explains the increase in intensity of pain I’ve been experiencing. This Dr. gave me information for physical therapists which I asked for and a script for Relafen to get a break from the same NSAIDS I’ve been on for 20+ years. He also strongly recommended surgery, sooner rather than later etc. Which brings me to the present. I have an appointment scheduled with Dr. Khaled Kebaish at Johns Hopkins November 5th. Reading, reading and doing more reading both on this forum and Dave Wolpert’s book has helped me begin to process what I believe is in my future 2009. I find myself now saying “WHEN I have the surgery” not “IF I have the surgery.” As I go through this process I’m sure I will be posting questions and even some comments here and there but for now I’d just like to say HELLO & THANK YOU! It is such a joy to have found a place filled with people who understand exactly what I have been and am going through!

[titaniumed]

Welcome Julie

Im wondering if your x-ray was shot from the front or is this x-ray backwards? Most of the double curves run the other way. Do you have your rib hump on your upper right side of your back?

Our stories are similar and also our x-rays. I was Dxd in 1975 and waited also. I always knew that I would have to have my surgery as they had suggested a luque method on me back then. (wires) I also went to quite a few chiros through the years like you.

This is a good forum with people with vast amounts of experiance.It is an invaluable tool. There are people here with 60 plus years of dealing with scoliosis. If you have any questions at all, just start a new thread, and they will be answered.

Before surgery, you will want to have all your ducks in a row, so ask away!

Ed

[debbei]

Julie,

Except for a few minor differences, our stories are very much the same. My parents weren't comfortable with the surgery option back in the mid-70's when I was a young teen, so I wore the brace for 3-4 years, and was dismissed at about the same degree measurements as you were back then. I was also stunned in April/May of this year to learn that both curves were in the mid 60's. I know what a shock this must be to you. We go along our merry way through life, not complaining too much about back pain, because we figure everyone's back hurts, right? Then WHACK-BAM, right on the nose with this crazy news that you're more twisted than you thought.

It's now been 2.5 weeks since my surgery. I was scared to DEATH, just ask anyone around here, or look up my old posts. I can't tell you what my curves measure now, not for another month when I go back for my follow-up with the surgeon, but I cannot believe how I don't feel so bad. I know pain is different for everyone, but I've already started cutting down on pain meds. Last night I woke up 6 hours after my last pain pill, and I wasn't in so much pain. I took one pill instead of 2. Today I walked 3 miles, in 2 different sessions. I can't believe I'm saying this, but for ME, only 2.5 weeks into recovery, it's not so bad. I am so happy that my spine will be stablized as I get older. If I didn't do this now, who knows how far my curve could have progressed.

I guess what I'm trying to say is, get the best opinions you can (more than one), try to get the best doctor you can find, and if they do recommend surgery, don't be TOO freaked out. Yes, I know, I know, the pot calling the kettle black. I just want to be able to help others the way that all the people around here have helped me. You can get through this, as scary as it may be.

((Hugs))

[JenniferG]

Hi Julie, and welcome to this wonderful forum!

I am about ten years down the track from you. In June this year, aged 57, I was told I needed surgery, T5 - S1. My thoracic curve was 66 degrees but since then, I am quite sure it has progressed further. I initially booked my surgery for September 16 but chickened out. I didn't have it right in my head and needed more time. I'm glad I cancelled because I found this forum, and some very helpful members, who've helped "get it right in my head!"

My surgery is now scheduled March 10 next year. Like Debbei, I am scared witless about it but I now think I can go through with it. I am on anti-anxiety medication which has helped immeasurably. Initially I was on the verge of driving my car off a cliff - anything to avoid the surgery, but feel I can do it now. Though heaven knows what I'll be like come Feb/March.

I do know now, that this surgery will at the very least, stabilise my spine and it won't worsen. I will be happy with that. If I get a straightening and look better (especially reduce the awful hump!) I will be thrilled. I know it's not going to be easy and I'm encouraging those who've had the surgery to tell me all the bad things as well as the good, so that I am prepared for whatever comes my way. I recently bought David Wolpert's book, which also helped.

So you're not alone Julie. We're in this boat together and many thanks to those who've paddled before us, we'll get through this thing.

[sasha]

Hi Julie,

Like you I found out this year that my spine had moved again (I had a fusion back in the 60's) and, yes, it was a shock. But in a way it removes the shall I or shan't I from the op equation as something sure needs to be done to stabilse it. Before I knew that piece of info, it was 'just' the pain that had taken me to the scoli doctors.

Looks like there are a few of us in roughly the same sort of place and it is scary, but when you read the stories on here they are very encouraging, but those anti-anxiety meds sound like a good idea! My provisional surgery date is 8 Jan 2009.

All best wishes to you. xx

[doodie]

Thanks for the 'welcome' messages!

So Ed, maybe I am confused about how to view x-rays....I always want to flip the film over so that it matches what I look like when I look down at myself (does that make sense?) However, this x-ray was taken from the front and I have a right thoracic curve - this is how you would see me if you were facing me. Is this the right way to display an x-ray? If you look at the right top corner of the film you can see an "L" on it. That's my left side. My rib hump is on the right. For someone who has lived with scoliosis for the past 35 years, until lately I have known very little about such things related to it. I'm taking a crash course lately! Any suggestions are greatly appreciated!

And Debbe, I was following your posts before your surgery and was waiting for the first update with everyone else. You asked so many thoughtful questions, things that I'm sure others might have asked but were embarrassed or something - so thank you for that. I still have even more questions but I will just wait until after my appointment on Wednesday, I may get some questions answered then. I do have two for you though, #1 You have a twin sister as do I....does she have scoliosis too? My identical twin has scoliosis but her curve was about 25* and as far as she knows, it has remained the same through all these years. #2 Was your surgeon Dr. Neuwirth - the author of The Scoliosis Sourcebook?

[titaniumed]

Julie

I've always looked at them as if you are looking from the back. The way a Chiro or masseuse would look at you back with you laying face down on a table. No biggie, just wondering if you were curved left thoracic which you don't see all that much.

Let us know how it goes on Nov 5th. Remember, you do not have to commit to surgery right now. It will be ok to tell your Dr that you want to think about things right now. In other words, its ok NOT to make a decision right now.

This is serious surgery. Don't just jump off the diving board because someone says so. This will be your decision and no one else's.Once again, you will need to prepare and it looks like you have started and that's good, and make sure you have all your questions answered. Some have posted lists here on this forum, you might use the search button and dig around.

You need some things like, a good surgeon , insurance needs to be addressed, your living arrangements, financials, etc. You will need to be mentally prepared and totally understand what you are about to do here. I knew I was going to have this surgery back in 1975, so I have been "aware' of the situation for about 33 years. If you read my threads and posts, you will see an exciting story with some crappy comedy to boot! LOL

Have you seen any videos of scoliosis surgery? If not, I will find some links for you.

Regards
Ed

[debbei]

Thanks for the 'welcome' messages!

So Ed, maybe I am confused about how to view x-rays....I always want to flip the film over so that it matches what I look like when I look down at myself (does that make sense?) However, this x-ray was taken from the front and I have a right thoracic curve - this is how you would see me if you were facing me. Is this the right way to display an x-ray? If you look at the right top corner of the film you can see an "L" on it. That's my left side. My rib hump is on the right. For someone who has lived with scoliosis for the past 35 years, until lately I have known very little about such things related to it. I'm taking a crash course lately! Any suggestions are greatly appreciated!

And Debbe, I was following your posts before your surgery and was waiting for the first update with everyone else. You asked so many thoughtful questions, things that I'm sure others might have asked but were embarrassed or something - so thank you for that. I still have even more questions but I will just wait until after my appointment on Wednesday, I may get some questions answered then. I do have two for you though, #1 You have a twin sister as do I....does she have scoliosis too? My identical twin has scoliosis but her curve was about 25* and as far as she knows, it has remained the same through all these years. #2 Was your surgeon Dr. Neuwirth - the author of The Scoliosis Sourcebook?

Hi Julie,

I do have a sister, but she is 3 years younger, not a twin. She has a very mild case of scoliosis that was never treated. And for #2, yes my surgeon is Dr. Neuwirth, and I am very happy with the results, even though I don't have official measurements yet. I can tell the difference in my body already. I am feeling so good too, I just got back from a 45 minute, 2.5 mile walk with my mom. Now I'm ready for a nap. Just ask away any other questions you may have.

[Nancy Joy]

Welcome Doodie! You have come to the right place!

[doodie]

Hi Nancy - Thanks! It's great to be 'here' I know you have a second surgery coming up in a week and would like to wish you much success...I was waiting with everyone else for the updates after your 1st surgery and am so pleased that you are doing so well. You give those of us waiting for surgery a lot of hope. I have a question for you...how did your surgeon determine that he would do both posterior & anterior procedures on you? Can that decision be made simply by looking at a standing x-ray or do you need to do bending x-rays too? That I too will need a dual procedure is my greatest fear in all of this! I think you're very brave and just seem to be handling everything so well.
(I also wanted to tell you that I lived in Hays until 4 years ago I miss Kansas and believe it or not I miss the wind!)

[Ginger W.]

Facing the fact that I needed surgery was the HARDEST thing for me. When I realized what needed to happen, everything fell into place.

I went for decades ignoring (my primary coping method), covering it up with pain relievers (my secondary coping method), trying alternative therapies (my desperation method) etc.

Best of wishes to you, Julie.

[txmarinemom]

Surgery videos ...

Julie,

Ed offered links to surgery vids, but I actually had photos taken of my entire surgery. It's easier to see the details without all the movement.

PM me if you'd like to see them ... I'll send you a passcode to download the .ppt file.

Regards,
Pam

[doodie]

The real thing

About 2 years ago I was checking for scoliosis surgery videos online and didn't find a lot out there, period. Since the YouTube explosion there are more but still not the best quality and they are short. I have seen all the animated back surgery procedure cartoons and they are just so white and clean and not at all realistic. I think I prefer the real thing. Just like I want to see what the hardware looks like and feels like....Do they have 'sample hardware' that you can touch before your surgery?

[titaniumed]

Hi Julie

The videos on the HSS Hospital for special surgery site and the research channel are of high quality. here are some of the links.

http://www.hss.edu/conditions_15853.asp

http://www.hss.edu/search.asp?keywor...e=All&x=5&y=11


"Surgery saved my life" with Dr Boachie is a good film to see. It shows how invasive serious surgeries are. It had quite an effect on me even though I watch quite a few surgical videos. As an adult with scoliosis I feel that it is necessary to view before making your decision. It will also show non-scoli family and friends who know nothing about the subject, exactly whats involved.

I tried to find it the other day and was unsucessful. It is available through Discovery Channel.

Your surgeon should have a few screws laying around to show you. Just ask him.

Pam does have great photos of her surgery PM her

So did you see the Doc today?

Ed

[Nancy Joy]

Hi Julie~

He told me how he would do the surgery looking at regular x rays. If you get told you need to do both, just ask questions because they will probably have a pretty good reason for it. I understand why we are doing it even though I don't want to "go backwards" again for awhile. Girls gotta do what a girls gotta do (or cowgirl up as I get told!)

Nancy