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foofer
03-28-2010, 01:19 AM
Hi everyone,

I've been reading this forum since Nov 09 and this is my first post. I've loved reading all the wise advice and seeing such great caring support of one another. Since the first few weeks of logging on I've been telling friends and family...."I have found my people."

I'm 55, 4 grown kids, married, and work in Colorado full-time. For the last 10 years, my orthopedic back MD has followed my slow progression, and in 2008 he urged me to consider surgery since my curves were advancing more rapidly. I have family in NYC, so I visited one of the NYC scoli doctors, and he gave me the pain/progression criteria, said come back in a year....I revisited in Sept 09, had new x-rays, showing curves of 64T, 65L, or 8 degrees more than my Colorado doc had measured. So now it will be determined if I am progressing with my next set of x-rays, as there is the possibility of pilot error, or difference in measuring Cobb angles. But the visual certainly told the story....Dr. B said I would need a lumbar anterior/posterior fusion, and if my bone density was not good, I would need thoracic fusion. Had bone density tested, showing osteopenia in spine, so it looks like the Full Frankie for me, if and when I decide to make the leap...

I am not in horrifying pain. I don't take anything stronger than ibuprofen, but some days I take 6-8 of them. I'm never comfortable, always achey, stiff, have to keep moving and changing positions constantly, but not "cattle prod pain", so it's not a slam-dunk decision for me. From my neck to my waist, it feels like I went through a trash compactor- there is no room for everything and it's all jammed up and harder to breathe and I can't see over the steering wheel as well as I once could! If I have surgery, I would want to wait until long-term disability kicks in next October, and preferably into the spring of 2011, so I can get past another winter resort season, workwise. So a full year of contemplating, obsessing, wondering, and worrying. I will need coaching. Please?

So I just wanted to get on the same page with everyone, come out of the shadows, and many thanks to all of you....

Vali
03-28-2010, 05:41 AM
Hi Amy, Welcome to the forum! As you have seen, there are a lot of fantastic people on here with a lot of knowlege, sympathy and empathy. Ask any question and you will receive many answers based on our own experiences. Best wishes.:)

gmw
03-28-2010, 07:19 AM
Hi Amy -- I pretty much sit in the shadows reading too. I find the folks and their posts here to be so helpful and positive. No surgery yet for me, but getting very close. Look forward to meeting you here.:)

jsully
03-28-2010, 08:55 AM
Hi! I feel much the same way as you. Not horrible pain, most of the time, but almost always uncomfortable. My curve keeps progressing as well, so I decided to go through with it. It is such a hard decision to have such extensive surgery. However; as you know, things just continue to get worse. Good luck!
Janet

ShariMSU
03-28-2010, 10:12 AM
Hi Amy - i got on the forum in January and am having surgery on April 15. It is a tough decision as I feel good and have a good quality of life. I realize I have pain most of the time, but adjust to it. So it's very scary to know I am going in good and coming out different. However, I know I will have to do the surgery at some point as I have spondylolithesis happening. So I figure do it now while I am healthy, fit, good support, and good doctor. Good luck in your decisison process and this forum is great for learning and connecting.
Shari

RitaR
03-28-2010, 04:14 PM
Welcome Amy - You will know when the time is right to make the leap into surgery. We all struggled with "should we or should we not" - "now or later". Take it from mek - once you were in as much pain as I was in it was not much of a decision. Trouble with the heart and lungs makes it a little easier to make the leap. And, then, you can join the rest of us on the "other side". Welcome again to the forum.

JenniferG
03-28-2010, 05:22 PM
Hi Amy. When I was 55, I was just starting to experience moderate pain and it was beginning to impact my life. I saw my Surgeon in June 08 and he said I should have the surgery within 12 months. I had it 9 months later, just short of my 58th birthday. My curve was progressing at that point (2 degrees in 9 months.) I was lucky, my bones were good and my surgeon believes (without a ct scan to prove) that I am fully fused.

I am glad I had the surgery when I did. I had time to get fit, and my moderate pain allowed me to get fit. But prior to getting fit, the pain was increasing and if I'd left it too long, I doubt I could have achieved the fitness I did. I believe it helped in my recovery. Apart from withdrawals from oxycontin, and weeks of dizziness which my surgeon attributes to the antibiotics given in surgery (not sure I believe this!) I had an easy recovery. It's great to be straight, taller and pain free.

debbei
03-28-2010, 06:56 PM
Hi Amy,

Welcome to the forum. This is the best bunch of people you will find anywhere. I know it's a scary decision when/where/if to have the surgery. Good luck in your decision, and ask any questions you might have.

The people on this forum saved my sanity. Without them I would have been in the looney bin.

mbeckoff
03-28-2010, 07:10 PM
Hi Amy,

This is the best place.These are the best people. They will answer all your questions and make you feel at home

Welcome

Melissa

ADMoul
03-28-2010, 07:46 PM
Hi Amy and welcome! I think a lot of us lurk around just reading here until we finally send our first post. I don't exaggerate when I say this forum changed my life. It helped me make the decision for surgery, helped me find the right Dr. and was a wonderful resource esp. in those stressful weeks leading up to surgery. Scoliosis is not all that common a condition and to be able to vent and share with others in this journey is wonderful. You will find lots of supportive friends and good, solid information here.

foofer
03-28-2010, 07:58 PM
Ladies,

Thank you so much for making me feel so welcome. This is wonderful. I've been quite hooked on reading this forum, and I've learned so much. This is kind of like being attached to one of the medical TV shows, like Grey's Anatomy or something, except that EVERYONE has what I have!!

Jennifer...Yes, I have re-entered the world of better fitness, in anticipation of whatever. Several years back, before I was considering surgery I was pretty devoted- thinking it would ward off a surgical outcome. Then at some point, I got nervous every time I would tweak a muscle or feel unusual soreness, partly as a result of my doctor being worried about the spondyl.... (too major a word to write out every time!) slipping further. So I backed off. Interesting to find that the NYC doc said not to worry. The many differences in medical opinions. It's been liberating to think that I will eventually- sooner probably than later, have the surgery. So I've been going for it and loving it. Kind of like being in control in some small way.

Again, thank you all for welcoming me, and I am so glad I found my people.

Amy

Doodles
03-28-2010, 09:38 PM
Amy--I want to squeeze in one more welcome here. I'm sure you've already learned so much as I did. Your analogy of the trash compactor from neck to waist is perfect. That's what I always felt like too. So glad that part is stretched! Janet

titaniumed
03-29-2010, 02:21 AM
Hi Foofer

I think of it as Grey's Anatomy with a touch of "Laugh In". You really need a good sense of humor to have scoliosis.

Do you work for a ski area? Just wondering since Ive skied all over Colorado.

I had an A/P 26 months ago. There are a few of us here that have done that. Ask any questions you like.

Welcome
Ed

Nitram
03-29-2010, 12:43 PM
Hi foofer, I was in a similar situation to yours and had A/P surgery 12 days ago from T10-Pelvis and it was the best decision I have made. While the first few days after surgery were miserable, I'm so happy I did it at this point as I know I won't have to worry about this the rest of my life (assuming my fusions take that is). It's a tough decision for sure but I suspect the vast majority of people of this forum are far happier after surgery.

Rich

foofer
03-29-2010, 01:11 PM
Rich,
I am so glad you are pleased with your decision and the outcome. I love love hearing the good news...Thanks!

And Ed,

So happy to finally meet you....I love reading your posts. I have LOL'ed many a time, especially after the Fabio/Benny Hill pics.

I know I will have millions of questions and will just have to pace myself.

I work for a ski retail store as their seamstress/tailor. I live in Aspen, but don't usually admit to it, because of the glitzy reputation and such. I've lived here since 1976, raised 4 kids here There is a strong community of people here who work and play, make a normal income (or subnormal), love the mountains....

This may come as a terrible shock to you, but I think we may be twins. We're born on the same day. Maybe not though, as I guess I have a few years on you and I don't look a thing like Fabio.

Thanks for welcoming me!
Amy

titaniumed
03-29-2010, 02:30 PM
My Colorado ski list is
Monarch
Crested Butte
Telluride
Powderhorn
Copper
Keystone
A-Basin
Loveland
Winter Park, Mary Jane
Steamboat
Breckenridge
Vail

Ive been to approx 95 areas in North America and Canada. I remember every one of them.
I also heli skied in British Columbia in 1995. Chasing powder, watching for storms all these years.

I never made it to Aspen... Maybe some day. Ive been around the Tahoe basin since 1982.
Dec 11th, oh no, were in trouble now...
Comedy is a stress reducer. Sometimes its necessary.
Ed

Shari
03-29-2010, 10:10 PM
Welcome, from me as well foofer,

I couldn't help myself from cracking up when you said "I have found my people". Sounded to me like you were looking for aliens:). Which some of us do appear to be "out there";).

I know how I felt when I found these people, and was instantly addicted.

Good Luck,
Shari

mbeckoff
03-29-2010, 10:43 PM
I know that I felt that way when I found this forum.

We really should have a get together

A thread should be started as to where we live

Is any one else interested?

Melissa

LynetteG
03-29-2010, 11:07 PM
Shari - that is hilarious - looking for our people "looking for aliens". I sure feel like an alien a lot of the time :)

titaniumed
03-29-2010, 11:27 PM
It reminded me of Moses, leading his people from bondage....

I guess I was in bondage for awhile....
Ed

foofer
03-30-2010, 10:01 AM
I've often felt like an alien, and it always worked best to pretend otherwise...

I think one of the hardest things about scoliosis is that it's such a challenge to talk to people about it. On the surface, I look pretty normal, I can be active, although I am Captain Careful about most that I do. If I tell people I am considering surgery and then describe the surgery, they pretty much act like I have taken leave of my senses. Then I get a lot of advice on cures and therapies, most of which I've tried. It's all well-meaning, but misguided, so it's nice to find people who speak my language.

Here at the promised land, here on Mars....

Amy

allycat
03-30-2010, 10:43 AM
Amy,
First, welcome! There is always room at this table for more!

It is amazing to try to explain the challenges and complexities of scoliosis to anyone that does not experience it. Prior to my first surgery, I had great posture but tons of pain. Apparently I managed to put on a brave face, because when I explained to some co-workers that I would be off work for quite some time and told them what I was having done one of them actually asked if the surgery was elective. Really?!?! Yes, I'm going to go through all that by choice because I need a long vacation! Even my mom, my husband, my kids and my best friend, bless their hearts, still don't get it. So this is MY place to come for companionship, comfort, sanity, solace, information and understanding. I found this beautiful utopia about 6 months before my surgery and learned more from the wonderful and intelligent people here than I did from any website and my surgeon put together. I told my friend yesterday that several of my friends are having surgery this week. And you all are my friends. And I thank you all for that.

By the way, I absolutely LOVE Captain Careful! That's fantastic!

gmw
03-30-2010, 02:35 PM
Amy -- So glad to read your post. I get the same reactions from family, but friends in particular. When I talk with them, I question myself and feel like I shouldn't be considering the surgery. I, too, am very careful not to do things that tend to make my pain worsen. Thank goodness my husband is with me and knows the pain I'm having so he gives me validation. I know they are well-meaning, but it hurts more than it helps.

doodie
03-30-2010, 04:07 PM
I was nodding my head in agreement while reading through these posts...it IS difficult to describe the scoliosis we have all lived with for so many years before 'electing' to have these surgeries. We live our lives being active like everyone else and put on a front when the pain gets worse, until when we finally start talking about it, those around us are taken by surprise that we HAVE scoliosis and that we are considering something so drastic as surgery.

I put off surgery for as long as I could and most people did not know the extent of my suffering. Even my husband until the last year or so. Once I made the decision to DO something about my pain, I felt empowered. It was the right decision for me and I would do it again in a second if I had to do it all over again! :)

I need to say Welcome to you Amy! Nice to see you here - you're in the right place if you're looking for support and answers - and a lot of laughs too! :D

Shari
03-30-2010, 09:25 PM
Wow!!!! Getting some goosebumps here. This should turn out to be one of the more often read threads. Every single post here, is a slice of insight into the hidden world that we all tend to share.

I am completely blown away, and can't wait to hear more!!! In so many ways, I think at some time or another, we have all felt some kind of alienation from "straight";) people. This is a must read, don't ya think???
For some crazy reason, I am overly emotional right now???:confused:

Shari

gmw
03-31-2010, 06:03 AM
The posts on this thread have definitely struck home for me. I just had to read the ones about the things well-meaning people say to my husband. He was touched as well. Thanks to all of you! :D

allycat
03-31-2010, 10:20 AM
Wow!!!! Getting some goosebumps here. This should turn out to be one of the more often read threads. Every single post here, is a slice of insight into the hidden world that we all tend to share.

I am completely blown away, and can't wait to hear more!!! In so many ways, I think at some time or another, we have all felt some kind of alienation from "straight";) people. This is a must read, don't ya think???
For some crazy reason, I am overly emotional right now???:confused:

Shari

Shari,
It's an amazing feeling when you find you aren't alone in any particular situation. And to find that there are others that can relate, truly relate instead of just saying "Really. Wow that sucks." when you try to explain your situation, IS emotional. Alone is an awful place to be and when you finally find that you aren't alone it's such a relief! For me, it felt like I found a family I had been looking for most of my life and it was fantastic!

jesscv
03-31-2010, 02:57 PM
Amy,
I sent you a private message, but I live in CO, too...so let me know if you have any questions... =)

foofer
03-31-2010, 03:13 PM
When I first started reading here, I ran across a post from a young woman- don't remember her name- who talked about scoliosis as "the silent disability".
She was on the threshold of surgery and she let it fly about all the years of carrying this condition. I was deeply moved and started to really let myself think about it and all the moments and comments through the years. Stuff comes up to be healed and usually brings some tears.

Another factor is what I think of as the "fraud factor"- not even believing yourself that you "have something" that needs to be reckoned with. And then it's compounded by reactions of others. It's an awful feeling to not be believed, or to sense doubt or be second-guessed.

Mostly I try to stay quiet about myself in my immediate world. A few years ago at my present job, I decided to let my manager know what I was dealing with so that I would have someone in my corner, understanding that I have challenging days and might not be comfortable moving furniture around or heavy lifting. I still get uppity though and try to do things that I should not. We are our own worst enemies sometimes!

I've been quite the crying girl since reading here....every time someone goes to surgery= tears. Every time someone is having a tough day=tears. Every time someone reports in terrific news= tears. So a lot of weeping. Have to change to waterproof mascara. I feel like Naomi Judd, dabbing at my eyes all the time.

Thanks everyone!
Amy

gmw
03-31-2010, 03:27 PM
Amy -- Thank you! So glad you're here. I even had a physical therapist tell me that much of our problem was psychological. So I really started to question whether the pain was a bad as I thought it was.

titaniumed
03-31-2010, 05:14 PM
Amy

Its neat that you at least know 12 in Aspen. I didnít know anyone till I joined this forum. Its great that the "dark ages" are over. I always wondered how many scolis there were years ago. It always seemed that Doctors didnít actually cooperate with our "scoliotic social needs" years ago.

For skiing, I waited till April of 2009 which was about 14 months. My surgeon actually told me to go skiing and that first day was out at Park City, Utah. They groom their slopes like putting greens out there, so it was pretty smooth.
http://www.scoliosis.org/forum/showthread.php?t=8698

I didnít have any problems really. Not having permission to crash really affects the way I ski now. Its like driving after getting that speeding ticket you know. You slow down 5 mph. LOL
Ed

foofer
03-31-2010, 11:42 PM
Ed, (and everyone)

You slowed down 5 mph. I would slow down TO 5 mph. From 7 mph...:) Your pics and skiing thread were great fun for me, very hopeful. Thanks.

I thought of 3 more people, so it's up to 15, and that's not including me. Most of them were people that I have worked with for alterations, so I noticed their curves, leg length differences, etc., but I don't usually say anything unless someone says it first. 7 of them have been fused- 4 with lots of problems, one with ancient Harrington rods but few problems, one new and so far successful, one I don't know how it turned out. 13 female, 2 male. 5 with substance abuse problems. One woman passed away from drug addiction. She had flatback and so many issues. Sad.

It came up as an interesting list: counting local scolis, but it made me realize that my exposure to scoli treatment has been quite negative. Most that I know who were fused (4 of 7) have had negative outcomes. To the best of my knowledge, only one (the happiest camper) has had newer techniques... everyone else had older methods. The unfused rest of the lot (that I have had conversations with) just deal with it.

Makes me so glad that I didn't have surgery in the questionable old days and that I am on this forum hearing the good news...

Good night!

titaniumed
04-01-2010, 10:28 AM
Well, thatís a great way to screen people. Maybe if the prom was held at age 10,11,12,and 13, more scolis would be discovered earlier.

That is sad that some become addicted to things. I must say that getting off opiates takes strong determination.......

They wanted to do a Luque wire method on me and the SLW sub laminar wire really isnt a bad way to hang onto things. It was way better than a Harrington rod, the only thing with me was how they would have fused to my pelvis. Ive looked at many x-rays, and have never seen a Luque fused down to the pelvis. I donít think it was possible.

I must say that I think that by waiting, I did the right thing. The pedicle screw takes care of the rotation issues and the hardware they use today is excellent. Years ago, I was under the understanding that I would probably have my surgery done when I was 60, but when I was 48, I didnít feel that I wanted to wait. I didnít want to use up my surgical window. Pain helps the decision.

These are good times for scoliosis surgery. What has happened in the last 40 years all across the board, with procedures and technology is incredible. We need to thank all the pioneering scoli surgeons of the past, and also all the older scolis who paid dearly. People like Frankie Bush. Read his story.....
http://www.frankiebush.com/?page=medical#procedure
Ed

foofer
04-01-2010, 11:05 AM
Incredibly humbling....

Thanks for posting the blogsite.

We are lucky.

Shari
04-01-2010, 08:24 PM
Foofer,

I must say I love your wording. Now another one that makes me laugh. Thank you!!! You, however put me staight in the gutter. When you said "Captain Careful", I thought, trogans, "fraud factor", I won't write what I thought. I even got a kick out of local scolis, being from West Virginia;)!!!

My back's straighter, but the mind's still twisted. I can't to find out what the "Full Frankie" is ?!?:p

Thanks for the chuckles,
Shari

P.S. Do you mind if I steal a couple of your lines???:cool:

foofer
04-01-2010, 11:55 PM
You can steal my lines any time, as I do when I hear a good one. I just go ahead and say, "I like that. I'm taking it."

The Full Frankie came out one evening right after I got my bone density done and it wasn't great, which meant that I would need thoracic fusion as well as lumbar A/P. I was whimpering to my husband that I would be like Frankenstein, that I had to get the Full Frankie. He stole the line immediately.

We have to laugh. I swear it's the only way sometimes!

Thanks for enjoying- it means a lot!
Foofer

dailystrength
04-02-2010, 07:58 PM
I know that I felt that way when I found this forum.

We really should have a get together

A thread should be started as to where we live

Is any one else interested?

Melissa
I think that's a great idea, Melissa! Perhaps regional get-togethers. I am in VA so not that far from you.

dailystrength
04-02-2010, 08:06 PM
I agree this has been a great thread- thanks so much everyone. The honesty and humor can't be topped.
Christina

mbeckoff
04-02-2010, 11:01 PM
I think that's a great idea, Melissa! Perhaps regional get-togethers. I am in VA so not that far from you.

where in central VA are you?

I think getting together is an excellent idea

Melissa

allycat
04-02-2010, 11:34 PM
I'm in OKC but not at all opposed to a road trip or a plane ride. Perhaps Las Vegas? I actually wouldn't mind Reno. I hear there's great skiing in that area. Do we have a scoli buddy that possibly lives in that area? Just in case you didn't know, I talking to you Ed. The pics I've seen look so inviting! However, if OKC is a more central location for some of us, I'd be thrilled with that too.

dailystrength
04-03-2010, 08:21 PM
where in central VA are you?

I think getting together is an excellent idea

Melissa

Hi Melissa, I am in Charlottesville. Where are you in NC?

mbeckoff
04-03-2010, 09:55 PM
Hi Melissa, I am in Charlottesville. Where are you in NC?

I live in Taylorsville . We are about 4 1/2 hours from each other

Melissa

LisaB
04-04-2010, 10:35 AM
Hi Amy - I'm 55 also and wore a Milwaukee brace when I was in high school and things started getting worse when I was older. I ended up with a high grade spondylolisthesis and had surgery to fix that a year ago last January. I was fused from L4-S1(2 levels). My doctor said that he wouldn't consider fixing the scoliosis until the spondy was fixed and I had a stable base. Since my curves went from 65T and 43L to 60T 37L after the spondy surgery he said that I don't need to fix the scoli now unless it gets worse. I think 60 degrees is still pretty bad so I'm getting another opinion. The spondy surgery really helped the pain and numbness I was having in my lower back and legs. I'd like to get the scoli fixed as I'd rather do it now that wait until I'm any older. My spondy surgery was 7 hours and it's a tough recovery but I fused really well so I know I can handle the scoli surgery. Good luck with your decision.

foofer
04-04-2010, 11:27 AM
Thanks for writing, Lisa,

I've seen a couple different doctors in a 10 year period, usually when I am on one of my trips to visit my parents on the east coast. In Colorado, the doctor I've been seeing for 10 years seems to be more interested in fixing the spondy and leaving the scoliosis be. But, I've watched him switch up his approach as the years go by, which is understandable. He is also more of a broad spectrum athletic back orthopedic-not particularly comfortable with scoliosis operations, from my observations. The scoli specialists I've seen seem very comfortable with treating the whole deal, but it's more my choice-how much do I want to handle at once and how would it affect my life.

I'm in investigative mode now, reading this forum constantly and trying to figure out who, how, and where for surgery. "When" is a little more predictable, as I'm waiting until October 2010 for long term disability to kick in. That would mean some income, instead of total outgo! It's keeping me calm thinking I have a window of time. Later I will be nuts.

What grade is your spondy? I have a grade 2 and a grade 1, so I'm still a kindergardener. It feels freaky in there, the lower back area- some days, (like RIGHT NOW) getting sciatica....Can't stand up straight anymore, not because it hurts to be perfectly upright-it actually hurts more to be forward, plus I feel like an ancient, but biomechanically, I can't seem to sustain standing tall anymore. A weird feeling.

Based on my experience, I would urge you to see a surgeon who specializes in adult scoliosis and is a member of the National Scoliosis Foundation. It's been said many times on this forum, but worth repeating...

Stay tuned!! Happy Easter every one...
amy

LisaB
04-04-2010, 06:01 PM
Thanks, Amy. I had a grade 4 spondy and my legs kept going numb and I was starting to have numbness in my rear end. He, too, was more concerned about the spondy. He said he would not fix the scoli and the spondy at the same time. He also said that my scoli didn't go that low - where the spondy was. Anyway the spondy is fixed and no more pain or numbness so I'm happy about that. He is a member of the NSF but I feel like he does more adolescent scoli surgery and not much adult; that's why I'm getting another opinion. Actually contacted Bridwell's office in St Louis. Before I make an appointment for the 5 hour drive I explained my situation and they said that I should send my xrays and they emailed me some forms to fill out. I'll keep you posted.