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**Susie*Bee** · 06-19-2008, 10:40 AM

Debbe-- it's tough when others don't understand. Been there too. You know the saying "a picture's worth a thousand words"???? If I were you I'd get a photo of a recent x-ray-- that usually floors the hold-outs. When they think "curvature of the spine" they are not realizing exactly how extremely curvy some of us are. And I know one of my x-rays showed how close the ribs were on one side and how spaced far apart they were on the other, plus the rotation. Anyway, that's a thought.

You can also explain how it's progressing and getting harder to live with the pain, that your lung capacity and heart function will eventually be compromised, and it's better to have the surgery while you are still in relatively good health-- and that, in fact, it's possible to wait till you aren't even a candidate anymore due to brittle bones or other challenges. Correction and stabilization are more achievable too, before it advances too much more.

Print it up along with the x-ray photo, and hand 'em out to those who wonder. That might do the trick-- and if not, nothing would. Hang in there-- you've made the right decision, and your main support group is backing you up. Don't worry too much about the rest.

**Janet** · 06-19-2008, 11:52 AM

Debbe, I agree 100% with what Susie*Bee has already said. Sadly, many people don't get it or, especially with some family members, are in denial because they fear it could happen to them too. Most of the support I received was from forum members, although a few friends did come around after I took off my boxy, tent-like shirts and showed them the real deal.

Suggestions: if you show the photos of x-rays to these folks, after they pick themselves up off the floor and ask how they can help, tell them that what you really need most is positive support for your decision.

Also direct these "wet blankets" to this forum so they can educate themselves and understand why you made this difficult but necessary decision. Tell them that your condition will not improve on its own, and probably continue to get worse if you do nothing, and that the longer you wait, the surgery and recovery will be much more difficult.

You know you have made the right decision for yourself, and that is what is most important.

**debbei** · 06-19-2008, 12:29 PM

Thank you both Susie and Janet. I know I'm doing the right thing. That's a really good idea to show them Xrays, then they'll be as shocked as I was a few months ago when I found out how bad I had progressed.

You guys are the best.

**lelc2002@yahoo** · 06-19-2008, 02:25 PM

Debbe.
With 4 weeks to go until surgery, I remember my mom calling me to say maybe I should'nt do it. Needless to say, she probably had a horrible dream!
Then my husband said the same thing at about 2 weeks. They both were good along with everyone else by surgery time. Ly-

**Suzy** · 06-19-2008, 03:29 PM

You are doing the right thing

Hi Debbe,

The average person has heard the word scoliosis but they really have no understanding about it. I'm sure everyone has gone through what you are, I did. I taped my x-ray up on our sliding glass door for all to see. My Husbands first comment upon seeing it was "no wonder your back hurts." Ya think!!?? LOL! Most people think about back surgery in the context of an accident or disc problems. That is why we get the "why are you putting yourself through that" question. They just don't get it. Plus, the fact that WE choose when to have our surgery also throws them.

We are here for you to vent your frustrations, sometimes our family's just aren't enough. Don't let it get to you. I used it as a chance to educate.
You never know when family/friends might meet a new person with scoli. Their knowledge of your experience might help to steer them to you for info/advise. That actually has happened to me a couple of times.

**debbei** · 06-19-2008, 04:23 PM

Lynn,

Last night when I was explaining other people's responses to my husband, he asked me, in all seriousness, 'do you still want to do it'? Of course I do. He's not trying to talk me out of it, he just wants to make sure that I really want to do it, and he's not talking ME into it.

Sometimes I wish maybe I could wait till next Spring, which I can't because of our insurance coverage issue, but, if I did, what would that do for me? Just give me 4 or 5 more months of angst? I don't think so. My logical part of me knows I'm doing the right thing. I just don't want to let others make me doubt myself. I won't let them, I promise.

**PNUTTRO** · 06-19-2008, 04:25 PM

debbei.

I'm not sure if its a scoliosis thing or a spinal fusion thing. After I scheduled my surgery. Several people said that spinal fusion is a waste of time. The argument was that most people don't have pain relief in the end--or they injure their back again. It wasn't until I started talking about my back that people started to notice that I do have pain. It's obvious in the way that I walk and sometimes by my mood. It has been that way for a long time, but few people noticed it until I told them how bad I hurt.

They'll come around.

p

**debbei** · 06-19-2008, 04:26 PM

Originally posted by Suzy

Hi Debbe,
I taped my x-ray up on our sliding glass door for all to see. My Husbands first comment upon seeing it was "no wonder your back hurts." Ya think!!?? LOL!

Suzy,

you are funny. I'm planning on having a big party a week or so before I go in, so maybe as party decorations, I'll hang these long Xrays I have all over the place. BWHAAAHAAA. The Dr. will probably have them back by then I guess, but I could take photo's of them and do the same. I'm sure that'll freak people out enough to shut them up!

**ladare** · 06-19-2008, 04:32 PM

Hi Debbe,

I haven't had too many people challenge my decision, but I find myself constantly challenging myself with "am I doing the right thing"? And then I revisit all the pros and cons and quickly remember that I am choosing a better quality of life now, instead my current situation of constant pain, very limited activity, and a mind that is loopy and fuzzy on pain meds. And the thing is, it will only get worse, not better. Maybe your friends might be able to understand you don't want to live with the pain and on pain meds the rest of your life...like, would they? You know in your heart what is better for you than anyone else. Trust in yourself that you are doing the right thing. Quoting your statement "Told by Dr. my curve would never progress", I was told the same thing by a previous doctor. I knew it was increasing, I could feel it, but he so believed it wouldn't increase he wouldn't even xray me to find out. It's only increased 19* since then...about 10 years ago. Yeah, I'd say we know ourselves better than anyone else... Don't let someone who hasn't walked in your shoes discourage you.

Best wishes during this time of preparation for your surgery.

Lisa

**Louisse** · 06-19-2008, 05:32 PM

I can so relate to this thread, I too find myself kind of 'justifying my decision' - maybe reiterating to myself that I AM doing the right thing?! I'm in the same group as ''told I had stopped growing and that it wouldn't progress' but here I am with a 67 degree thorasic curve age age 41. It's been a toughie for me as I don't get too much pain, just back ache but I wonder if I'm just used to how my back feels after all these years...sure feels unfortable when I lie down to sleep at the end of the day but saying that, doesn't stop me swimming, jogging and generally running around at 100 miles an hour - I figure my back hurts a little even if I do nothing!

I too, carry a hard copy of my latest x-ray which usually gets a few gasps! (read this suggestion here on the site) Hubbie has it on his mobile phone (no not his screen save yet - that will prob be the one with all the hardware!) and shows friends etc
Best of luck with the preparations for your surgery - good idea about the party and please....vent away if you need to.

**dolores a** · 06-19-2008, 06:35 PM

Debbei, what a great thread, I have been experiencing the same thing and I have not even figured out which end us up yet! I too have two sets of peeps, the ones that are understanding of the situation, and then the others who just hear back surgery and tell me I am crazy for even considering it. What bothers me about those people is that it's not like I would consider something as serious as this without serious thought, 2nd opinions, educating myself etc... it's not like one morning I woke up and said "I think I'll have fusion surgery", I did not even know what this surgery meant before.

I am actually bringing my sister-in-law with me to Dr. Neuwirth next Thursday so that someone in my family can hear and understand what the doctor has to say, I hope that they let her in the examination with me. Although, my sister-in-law is probably one of the few who really does understand what's going on with me, as she has had back surgery, not for scoliosis though.

Anyway Debbei, as you can see from all of the posts it not just you that feels this way, but I'm very glad you brought it up.

**debbei** · 06-19-2008, 07:16 PM

Everyone,

you are just the best and make me feel so much better. In the past 2 days, I had these 'debates' with 2 very close friends on why I should do this, once they found out what it really is. Before I informed them of what fusion really is, they thought it was some magic surgery that would make me all better and never have any pain and not lose any mobility. POOF, like magic. I wish, LOL.

I'm kind of new here, but you will find that if I have something on my mind I will post. I would just burst if I couldn't come out with these questions and feelings.

Thank you all so much.

**lelc2002@yahoo** · 06-20-2008, 07:22 AM

there are many moods before surgery....

Debbe--your immediate family's reaction may change as you inch closer to surgery. It's only natural. My mom at 82 now, was worrying her self sick over me..Luckily she vented to my sisters & not me as I came closer to the time until she had to say something.
My husband was good until the week before & then said maybe I should wait.
He had a lot on his shoulders at that time as my mom in law had cancer she was dealing with, our two boys needed to be taken care of while I was in etc.
I showed my x-rays to a few friends prior to my surgery & most could'nt believe it. They said "It's amazing you can walk" augh!

I waited 8 mos. until my surgery & it was the most trying period of my life. I experienced many moods. I became much stronger as I went on & learned to enjoy each day more. I felt more alive then I ever did before leading up to this surgery!!
My faith grew much stronger throughout & now.
sorry to ramble on...Ly

**debbei** · 06-20-2008, 08:06 AM

Lynne,

You are not rambling, believe me. I really appreciate your responses; they give me strength.

Thanks,

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Now that I'm scheduled, I find myself defending my decision

Now that I'm scheduled, I find myself defending my decision

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