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**nzgirl** · 03-31-2008, 10:05 PM

Welcome!
It's such good news that you don't have pain, you're really lucky. If your curve has been progressing, many surgeons will suggest operating because they can't say whether or not it will spontaneously stop on it's own. Your curve has been moving slowly, so that's good and probably buys you more time. There doesn't seem to be research that says that having kids makes the curve progress more, so that's good news too. The consultations with surgeons should give you more information on whether to go ahead or not. It's a scary prospect, but most of us here have been there done that, and got through. It's an emotional time that's for sure!

There is never a great time to have surgery, it is disruptive to your life regardless. I was faced with the decision of 'when' to have surgery, like many people here... I decided that there were no benefits for me in waiting, as my curve was progressing and I didn't want it to reach a stage where surgery would be less successful. Also, the younger you are, the easier. My surgeon did say that for some reason women in their 40's or 50's (I think it was that age bracket) find it easier than women in their 20's and 30's. Interesting.

I'm 4 months post op right now, and I can't imagine running around after a toddler right now. There may be some people on here who had surgery after children. If you have a choice, it would be easier to go through the surgery without children! It's such a big deal that just looking after yourself and rehabilitating is exhausting.

**Susie*Bee** · 04-01-2008, 07:51 AM

Dear Summer-- so glad you are now a posting part of the forum! I hope you get some good advice from the forum! I haven't been in those same shoes as yours, so it's hard to know what to say other than it's a tough decision. In my case, I didn't realize I had scoliosis till I was pregnant with my first baby, and the doctor just mentioned it in passing... and 27 years later I finally ended up seeking help for my aching back! I have no idea what my curve may have been back in my younger days. Needless to say, I had all my children and raised them all before I came face to face with the need for surgery. The only advice I have would be related to how busy you get once you have a family-- and it would be very difficult to try to put your life on hold when you don't want to miss out on any of your children's activities/needs. NZ is right in saying it would cause a disruption in what you can do for awhile. But some bounce back sooner than others. You'll be in my thoughts and prayers as you and your husband make this decision. I also think that either way is do-able... but neither is easy. That's the part of this whole scoli thing that "sucks"-- it's often a matter of choosing the lesser of two evils. Which would LEAST mess up your life... But we get through it all ok and move on, because we scolis are tough and strong!!!

NZ--that's interesting what your surgeon said about the age thing-- I've never heard that us older gals had anything but two strikes against us with our age... I've always heard that the younger you are, the easier it is on your body.

**SummerNC** · 04-01-2008, 08:05 AM

Thanks so much to both of you for your response.....my mom says it perfectly....i am borderline on both my age to have children with being almost 32....and my curve that is progressing. It really IS just picking the lesser of two evils right?? when is the LEAST interrupting time....so thanks for that comment....it puts things into perspective. Good thing is people ARE waiting till older in life to have kids....I just don't want to be in a wheelchair at their graduation...haha!!

I do aggree with both of you that the older I get will make it harder on my body to recover from surgery, or harder to correct the curve the higher it gets....and also running around after little ones won't be fun while recovering either....so I have a hard decision to make--I am just soooo not ready for the surgery right now...I feel I have so many things left to do before the possibility that I can't do them again. One of the docs I saw said NO SKIING and NO HORSEBACK RIDING

....I am not an avid skiier, nor am I very good at it--haha....but we go once a year and I do love it!

I have been told to plan on 6 mo. of kinda "putting life on hold" and for me, that is so hard to think about...I rarely sit still!

How long did it take you to feel that you were somewhat "normal" again???

At this point I am still researching surgeons etc. If you have ever heard of any of the ones I mentioned, I would love to hear your input

I do aggree that everyone I have seen post here are STRONG...and if I can be anything like all of you post surgery....I will be fine!!

Thanks again for your replies....it means so much!!!

**myachingback** · 04-01-2008, 09:44 AM

Keep The Faith!

I am pretty new here too. I am a 53 yo guy. A lot of great folks on here will give you some great advice, that will help you make an informed decision based on lots of facts. YOU need to feel comfortable with your decision. My wife has been very supportive for me and that helps SO much. We have a 25 yo daughter that has no sign of scoli THANK GOD!The docs pretty much made my mind up for me as mine will probably start imparing heart and lung function before long. I have a left 53* lumbar and right 92* thoracic. I've done hard work all my life and have really used my back, I have 5 bulging lumbar discs now and started having lower back pain but still don't have to have drugs everyday. I am real lucky I think to have made it this far without any surgery or wearing a brace. I have no regrets at all about waiting. But what happened to work for me may not work for you! I have done a tremendous amount of mechanical work through the years and I developed some guidelines on when to fix or repair things. My motto is "if it ain't broke don't fix it". Now our bodies are certainly different! I don't want to influence you either way just follow your heart! Just take into consideration the amount of physical discomfort you have, the rate of curve progression, and last but not least insurance availability! These days 45 or so isn't really old if we can stay away for bad habits! Not smoking is a big help.
Best of luck to you-HANG TOUGH! You have a lot of folks cheering for you now!
Chris

**Rach84** · 04-01-2008, 11:40 AM

Hi, Summer!

Well, you beat me to it. I wanted to contact you as soon as I read your post. I don't think anyone could possibly be more scared than me. I may be a little younger than you, but I am totally in your place. See my curve just recently got up to a 55 degrees and it seems as soon as that happened, all my problems started. My deformity became much more noticeable, the pain increased, and well, I�m progressing. It sounds like you are too. I also would like to start my own family in the next 1-4 years and want to be healthy for that time in my life. I know how you feel, if you are progressing, than it might be time to take the plunge.

I haven�t been pregnant before, but I had a friend that had our degree of curvature during her pregnancy and she was in agony. Anyway, I�m sure your Dr.�s will have some good insight on which option will be best for you. I just don�t want you to end up like me, getting worse by the minute. From what I hear, there is a lot of down time with surgery and more than likely you will not want to do that while you have little ones around. Just a thought. I will most defiantly keep you posted on anything I find out. Good luck on Friday, keep me posted.

-Rachel-

**CHRIS WBS** · 04-01-2008, 11:51 AM

Hi Summer,

This member postponed surgery to have a baby at age 41.
http://scoliosis.org/forum/showpost....48&postcount=1

By the way, it really annoys me when I hear of a doctor telling a patient that they WILL HAVE to have surgery. No one has to have surgery. Scoliosis is rarely a fatal disease. This is elective surgery and it is major. Certainly a recommendation should be made if the doctor feels that surgery is warranted, but it is ultimately the patient�s decision whether or not to proceed with surgery. I like the attitude one surgeon took with me when he said, �If you were my sister, I would advise you to have surgery and that you have it within the next year or two.� And then he presented his reasons for making such a recommendation. But never did he say I have to do this.

I think you are wise to get other opinions and I wish you good luck in making the decision that is right for you.

Chris

**SummerNC** · 04-01-2008, 04:25 PM

CHRIS WBS,

Thanks so much for the link...I might try to keep in touch with her to see how the whole kids then surgery works out....I do agree with you that I don't HAVE to have it, but I know eventually if left untreated my quality of life will not be as good as it can be...that is why I want to get a few opinions....my mom keeps joking with me "are you just going to keep getting opinions till you hear what you want to hear?" hahaha--I have only seen one doctor at this point, but want to see at least 3-4 to decide what is best for ME. I hear EVERY scoli is different, and I really believe that to be true.

Myachingback,

Wow---92 T? Are you in alot of pain at this point?? The docs told me not to go much over 60 degrees. Did they say that years of hard work could have made it worse? Sounds like you need a long day at the BEACH

Reading your post makes me wonder if that maybe I can wait a few years until having the surgery...I just worry that I won't be the same once I have it and like I said before...and I am sure all the others presurgery feel the same....I feel like I have alot left I want to DO!!! I think you are pretty amazing to be as strong as you are...good luck to you with what you decide and you are lucky that you too have a spouse that is supportive..what would we do without em??

Rachel,

DEFINITLY keep me posted on what you decide to do...did you go to the doc today? I feel like we are definitly in a similar situation and I would love to stay in touch with you on where this journey takes you....i want children, but you are right...how much can you chase em if you are laid up after your surgery?? I hear soooo many different stories from up in a week to out of it for 8 weeks.....so it is just so hard to know...everyone is different I guess!

I am just very active and can't imagine being in daily pain and not being able to get around as much once the curve gets up there, but like you, I can't fathom surgery right now....so I just have to figure out when is the right time....will let you know how Friday goes..going to see Dr. Suh in Chapel Hill...if anyone has heard anything about him, please let me know!

Thanks all of you for your posts!!

**Mobee211** · 04-01-2008, 08:13 PM

Hi Summer! welcome. I am like you...28 years old and wanting to start a family within a few years. Plus I am going to grad school full time starting this fall..MA/PhD program. I am worried about being incapacitated after surgery too! I see a surgeon to go over my xrays and talk about treatment options on Friday. Anyway, I definately hear your concerns..I am somewhat in the same boat!

**Heathmoose** · 04-01-2008, 08:39 PM

Hi Summer. I was in a similar predicament. I got married at 32 and found out that my curve was progressing. I went to a high risk ob/gyn to get an opinion about whether or not I could manage a pregnancy and birth. He said I could have, but I risked some nerve damage, as I already had some numbing. I was also in a lot of pain from my scoliosis. I decided to go for the surgery first, since my curve was really progresssing (I tracked it for a year or two). I wanted to take care of myself before taking care of someone else. I was worried b/c of my age and worried maybe I would have trouble conceiving in my mid 30's. But I was in so much discomfort that I could not imagine handling a pregnancy with my pre-surgical back.
Let us know what you decide to do...
Heather

**SummerNC** · 04-01-2008, 08:41 PM

Hey Mobee21!

Thanks for the reply. I feel so welcomed and I think this forum is really going to help me

I really didn't expect many responses.

Where do you live?? Are you getting a few opinions or is this your first doc visit?

I would love to hear what your doc says about waiting a few years etc vs. knocking it out of the way now. I will let you know what I hear too. Sounds like you have alot of "plans" like me but I am learning sometimes we have to take a few detours on the road of life.

**leklein** · 04-01-2008, 09:08 PM

Hi, Summer. I am newer to the forum, but wanted to let you know my story. I wore a Boston brace as a teenager with 35T/38L curves. For a number of years, my curves were fairly stable but from age 32 to 44 increased from 42L to now 60L (T is about 52). Anyways, over this time period I did not have any significant pain (i.e. if I have taken ibuprofen 10 times for my back over the last 10 years, I would be surprised). I had 4 children from age 30 to age 40 and just turned 44 years old---no down time with pregnancies at all and no notable back pain. Like so many on the forum, I had been told that the scoliosis would be unlikely to progress in adulthood. At 32 y.o. (42L curve), I was told that I did not need to keep coming back to the doctor every 5 years unless I noticed decline in my height. Well from 30-40, I was busy with pregnancies, babies and kids so it was not until my physical at 42 that I found out my height had declined an inch, prompting me to return to ortho and find out about the increase in my curves. Truly, I noticed some changes in my body over that time period, but am in pretty good shape and attributed them to having 4 kids, hitting 40, start of perimenopause, etc. Yes, I sometimes had/have some achiness in my back after being on my feet all day, but it quickly goes away if I sit/lie down for even a few minutes. I just thought this was normal with how physical my life was with all the little kids.

I have seen Dr. Lauerman at Georgetown and Dr. Kebaish at John Hopkins. Both are watching, but not rushing me towards surgery given the lack of pain and fact my curves appear to be increasing gradually. Kebaish felt as I approach 70 degrees that surgery would be needed as that is point he feels they start getting less correction. Ideally, I would like to have my little guy (who is about to turn 4) in Kingergarten at least before having the surgery. By then, my oldest would be in high school and nearing the college search so there is never a perfect time with kids, but at least we would be out of the demanding years where they require so much to be done for them and where being a mom is such a physical job. Perhaps I can wait longer than that if curves keep only progressing a degree per year and I stay out of pain. I don't know. I tell myself that there are families coping with so much worse situations and that I am sure my kids will grow in some positive ways from the experience....they have a pretty cush life right now!!

Like so many on here, the idea of going through the surgery and the possible limitations to what I can do, especially in light of wanting to be active with my kids, is sobering. I worry more about the long-term than the 6 months of intense recuperation immediately following the surgery, even though I know that will be so tough. Those on this forum who have had the surgery and reported good outcomes have been very reassuring to me, like so many others. In a strange way, the lack of pain (even with high degree curves) can make the decision regarding surgery a more difficult one as your current quality of life seems pretty darn good.

I don't really know what conclusions you draw from my story. I have had a great last 15 years through pregnancies, having kids and raising a family and until 2 years ago blissfully unaware that scoliosis was still going to be a health factor for me. (In some ways, this lack of awareness made things much simpler.) I now do have a serious operation ahead of me at some point and will have to face it while I have kids still at home. Your curve is further along than mine was when I started having kids at 30 but probably not that different from where mine was when I had my last two children. Far tougher than the pregnancies for my back was the fact that my last child was huge and very heavy in that 1-2 year old phase when you are carrying them so much (plus my curve was higher by that point).

Anyways, I really wish you well in making your decision----Good luck!

**skoshi314** · 04-01-2008, 11:23 PM

Hi SummerNC, Mobee211 and anyone else that my benefit from my story,

My story is a lot like leklein's (I think I put it on another thread a while back but I'm too lazy to find it so I'll tell it again

). I'm 45, my husband and I have been married for 22 years and have 3 kids ages 17, 15 and 10. I was diagnosed with scoliosis at 13 but no x-rays were taken at the time so I'm assuming the curves were mild. My parents opted for chiropractic treatment and I continued that until my mid 20's when my chiropractor retired. I had my first child, Amanda, at one month shy of 28, had Andy at 30 and had Abby at 34. I can honestly say my back felt better DURING my pregnancies than before or after. Go figure! I didn't think a lot about my back until 1995 when I 'threw a rib out of place'. I went to a chiro friend, had x-rays taken and he measured my scolio at 39* I think. Well, I was too busy with little kids to worry about my back and it truly wasn't bothering me that much. I began having more back pain about 5 years ago but nothing a little Motrin wouldn't help. I've always been really active, waterskiing, mowing and edging my yard, chasing kids, practicing sports with the kids and just generally never sat still. The pain was getting progressivley worse and last spring I realized I wasn't doing as many active things as I used to. I had always helped with the outside work at our lake place (mowing, weeding, fixing things, trimming and hauling trees, you name it, I loved doing it!) but was doing less and less. I decided to contact a specialist and saw him for the first time in August 2007. He did x-rays and measured my curves at T-49 and L-60. I was a bit surprised! In the last six months I've had 3 MRI's, 3 epidural steroid injections, physical therapy, a myelogram, a bone density test and a CT.

I have known since last August that surgery is in my future, I just didn't know when. I was really wishing my doc would make the decision for me, but he said it is up to me to decide when. My husband and I have talked ENDLESSLY about the timing, since the recovery is lengthy. I'm very involved in all my kids activites and want to be at every event. Amanda will be a senior next year and she and Andy are heavily involved in high school band. Amanda will probably be drum major for marching band and Andy is going to be working on his Eagle project for Boy Scouts. Abby plays softball and takes piano lessons.

We finally had to look at this decision from several angles. The main factors we considered are: insurance. I work for the state and have great insurance right now, but you never know when that will change. Amanda has a car and can help shuttle people where they need to be. The busy time for my job is January through May. My boss is very supportive of me having the surgery and will hold my job as long as necessary. So, if I don't have surgery this summer, I'll have to wait until at least August of 2009. My pain level is increasing. So, I decided the second or third week of June will be my time to "straighten up"!

I must apologize for the length of this post, but I feel it's important to share all the little details that were taken into account when I made the decision. Whether you have children or not, this is a HUGE decision and should never be taken lightly. Kids add a whole different dimension to the decision making process. I was talking to my friend today and realized I'm not really scared of the surgery itself now that the decision is finally made. I'm much more afraid of how my family will do during my recovery and whether I'll be able to go to all the football games and watch Amanda and Andy march. My friend said the fact that I'm not afraid of the surgery confirms her suspicions that my bubble is a little off center!

Wow, I'm really windy tonight! I must stop posting while medicated! In all seriousness, there are so many things to consider when making this big of a decision. Multiple opinions are a wonderful tool in making that decision. And because we are an exceptionally strong group of people, you will do great with whatever decision you make! Hang in there!

**txmarinemom** · 04-01-2008, 11:40 PM

Originally posted by SummerNC

This is my first post here...I have been reading the posts for a few weeks and decided to get involved.

I am 31yo and went for a "check-up" in Feb b/c my husband and I are talking about children and I wanted to make sure I was "healthy". I was not prepared to hear that my curve had gone from 48-55/57 (two different opinion readings) and the prospect of surgery is looming in the future. I am in the process of getting a few opinions, but I understand that it is something that I will have to do sooner or later.

I wore a brace from 7th-10th grade and really thought that was the end of my "fight" with scoli.....they just said to "monitor" it through the years...now I am facing the possibilities of surgery. The last doctor I saw last week told me that I WILL have to have it, I just need to decide when.

Mind you I feel that I am very healthy, no noticible humps or disformities and I don't have pain at the present time. I really do want to have children in the next few years, and the big decision is to have the surgery NOW, or wait until after we have children. The TRUTH is I don't want to have it at all

....but I would love to put it off as long as humanly possible.

Summer,

With a 5� (or more ... up to 10�) margin of error, a "measured" �48� in 2007 to (11 years later) �55-57� could be nothing. If you still have your old films, see a specialist and make sure they were read correctly.

My curve hung - never moved - in adulthood at �50�. It ranged on the Cobbs from �48�-53�. I didn't have surgery because my curve was progressing.

I wouldn't let anyone convince you MUST have surgery until you get firm data.

Who read your films, anyway (in 2007 and 2008)?

Regards,
Pam

**CHRIS WBS** · 04-02-2008, 02:57 PM

Originally posted by leklein

In a strange way, the lack of pain (even with high degree curves) can make the decision regarding surgery a more difficult one as your current quality of life seems pretty darn good.

I know exactly what you're saying. Even with an 80� curve, I�m still doing pretty well. I will require a fusion to the sacrum and when I asked my surgeon if I will still be able to sit with my legs tucked under my hips which is what I frequently do while reading or watching TV, he said no and added that I will always have a problem with sitting. I was disheartened to hear this as I have no problem now whatsoever with sitting. Last week I spoke to a woman who had surgery a year ago. She is around my age and required a long fusion. She is still using a walker at times to steady herself as she now has a problem with leaning to the left and she said that she can�t even cross her legs. But what other choice besides surgery do I have when my spine is collapsing?

Chris

Announcement

New to Forum--first post, considering surgery and SCARED!

New to Forum--first post, considering surgery and SCARED!

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