Beginning to get scared.

[imanbabesmom]

I'm new here.
I found out in the sixth grade that I had scoliosis (same year I got my period-what a year). My parents took me to an orthopedic, (I can remember...how much I hated him. Like this was all his fault. Guess that's just part of being 12). I wore a Boston Brace for 4 years 23 hrs a day, out growing two.

I felt like a thumb on a hand full of fingers growing up. I felt different, depressed, and mad, very mad.....and felt like everyone knew... I kept a lot of these feelings inside.

I know now why I was supposed to be different.(one of my dear friends just found out that her 15 yr old has diabetes. She has to wear the pump. She's mad, frustrated. I try to explain to her Mom ....what she is feeling....I feel like I can really relate to her. I have felt those feelings, you just want to be like everyone else, you just want to fit in....and you don't. I know why I had scoliosis, to make me who I am today. Feeling different actually made me strong, made me want to be different and not get into the things most teens experiment with. I was a good girl for the most part, did a lot of baby sitting and enjoyed it.

Well, 15 years of marriage and two wonderfully, beautiful children later I find myself staring down the road leading to aging with Scoliosis. During the pregnancy of my second child (10.8lbs 23") I experienced a knot in my spine (feeling like it would break if I forced it, so I massaged until I could stand upright) Then there was the pain radiatin from the hip eventually down the leg and arm. My gen physician had an insert created to make up the difference in my hips....this has helped tremendously. Limits the styles of shoes I can wear, (stinks in the summer, I'm a die-hard "barefooter").

Now I am noticing that I am giving way to the top curve, when washing dishes or not realizing what I am doing I'll find I am WAAAYYY over to the left. I've not caught this in front of a mirror, sure it looks funny.

SO, I visited my local orthopedic today, just to check on things. He did xrays and said that my curve has increased 5 degrees over 10 years. ( I went prior to getting pregnant - at Mom's wishes ). I thought I could just climb back into my brace, because as bad as I hated that thing, I would gladly suit up now if it would prevent pain further down the road.

He mentioned if the pain in the lower back, hip runs down the legs ...he would send me to a specialist and look at surgery. That scares the bee gee bees out of me. I'm considering not updating my parents on this news. They already wonder if they should have opted for surgery. At the time I was braced they had numbers they used, and my curves didn't fall into the surgery range, and I was the good girl that followed their direction and wore the brace.

I am a Wuus when it comes to inflicting pain upon my self. Childbirth is the only exception.

Well, I have gone on long enough thanks for listening, and for any advice on this journey.

[LindaRacine]

Hi...

The brace will not help you at this point, and could actually make things worse by allowing your abdominal muscles to atrophy.

I would like to encourage you to be seen by a scoliosis specialist. 5 degrees is not much of a progression, but I'm not sure I would trust the orthopaedist to have measured your x-rays accurately anyway. Going to a scoliosis specialist doesn't have to mean that you're giving in to the idea of having surgery. You might be the type that is good at ignoring a problem. Or, you might be the type that will worry about a problem until you know for sure what's going on. If you ignore the problem now, you could have an unpleasant surprise one day.

You can find a list of specialists here:

http://www.srs.org/directory/directory.asp

Good luck!

Regards,
Linda

[imanbabesmom]

did you say -- queen of 'de nile --

I have pretty much grown up ignoring the fact that I have scoliosis. And thought that was a good thing.....I'm not using this as a crutch. "Nothing is going to hold me back".

Until now....talk about surgery is terrifying me. I have two children, I'm a wife, I'm a Mom, I work part time, I'm a daughter and a sister. I don't have time to have back surgery. Right now this is SO ultimately terrifying for me, I guess I have to be in denial.....just for now.

Thanks for your input.....I will look into it and see what my options as far as specialists are.

[lelc2002@yahoo]

Every summer my sisters & mom would see me in my bathing suit (by age 40) & say "have you decided to get a check-up on your back yet?" I guess I really just wanted it to stay 'as is" & I could live w/ the deformity at that point.. I finally went at 43 & I was scared to death... & unfortunately for me, I picked a Dr/surgeon from the local hospital who was recommended & really not at all personable(hope he was just having a bad day...but we did'nt click) He just told me there was nothing he could do, basically , he said it was way too risky since he would have to go thru the front & back. I still chuckle when I think of his words "you should've had this done when you were 15"..well Geez, thanks for telling me this at age 43... you A_ _!
I definitely think the second pregnancy had a big affect on my spine. I would definitely say to be checked 6 mos to ayear & see how it is progressing. And do find a Dr/surgeon who you like & trust.............Ly

http://lynnebackattack.blogspot.com

[imanbabesmom]

Did you?

Did you have surgery?

I guess the future is what I am thinking about at this point. I have lost one Grandmother who took care of her medical needs -- saving pennies and dimes, and doing without right up until the end. She didn't have a lot, but she didn't leave her children in debt. And I have another Grandmother that is here but only in the physical form. She didn't think of her children, all of my Grandfather's property had to be sold to pay for her nursing home care. In my opinion she was selfish.

I don't want to be a burden on my family later in life. I was a stay at home Mom for 8 years trying to do what I felt was right for my family. Trying to raise my kids. I've recently gone back to work with a flex schedule based around caring for my children and their school schedule. -- this is not going to provide me with insurance later in life....but I love my job. Do I give that up for the possibility of another job that may provide insurance down the road?

Right now I guess I'm just needing a shove from up above into the right direction.

Thank you for all of your input.

I thought after wearing the brace....it was all over.

[lostfan]

Hi, I'm new here, just joined today. I am 37, married and have 2 children ages 6 and 8. I was diagnosed when I was 18 with a 50 degree curve from T7-L2. I currently have a 62 degree curve. I too am getting worried about ageing with scoliosis. I've never had surgery and since I was 18 when it was found I was told I done growing and a brace would do no good. I went to a chiropractor back then for about a year and besides that have done nothing.

I suffer mostly with lower back pain but I've been told by my family doc that it is probably because I am out of shape...I am a stay at home mom x3 years and have gone from 140 to 170 pounds in those 3 years so I'm wondering if the lack of exercise and gaining weight is making things worse.

I too don't feel I'm at a spot in my life to undergo surgery and have heard so many bad things about it that I think I want to take the chance and not get anything done...I'm mostly worried about the deformity...since I'm heavier now I seem to notice it much more...I have one hip that sticks way out but I'm now wondering at age 60 or so what I will look like....I haven't been able to find any pics on line of anyone that actually is older and has scoliosis. If I knew I wouldn't look much different than I do now I wouldn't worry...I think I can live with the pain on and off and would prefer that to having the surgery.

Would love to hear from anyone...

[lelc2002@yahoo]

Lostfan,
I can relate to your feelings! Last fall I finally mustered up enough courage to make an appmt w/ a specialist in NYC. I went in beginning of Dec. & made my decision to go ahead on making a surgery appmt by Jan 1st. So really, I guess I made the decision to go ahead pretty fast, a mth later. I set my surgery for when my sisters, mom could best help me-- this August! At the time I thought, wow, August is so soon.....but I can tell you when you are waiting, it seems to go verrrry slooow! Now it has sped up a bit & I'm almost there. I was just very lucky to go to a Dr. that I felt immediately comfortable with & really trusted, otherwise I'd probably not be on this path.. I'm just the type of person that waiting to decide in another year would prolong the agony & drive me crazy(& my husband!) Besides I think I'm overdue for it anyway! good luck, you will learn a lot from this forum...I did! Ly
60/60 curves surgery this Aug 1st..................

[sweetness514]

I thought after wearing the brace....it was all over.

I just had to answer this quote, as it reflects a lot of my thinking lately. I thought the same as you, after wearing the brace, and now after having surgery, as my orthos used to tell me, that it would be all over but it isn't and after three surgeries I still have pain and have to pursue new doctors, and treatment. There are people who get this surgery who do great and others who have good and bad moments(as myself), down the line, so knowing this think wisely and only you know what you will want to do and how much pain you're willing to take.

Good luck.

[imanbabesmom]

but i don't

that's the thing. I don't know what to do.

I've walked around in tears for days at the thought of the future.

I've told only my husband.

I don't handle pain well.

thank you for your input I really appreciate it!!!!!

[Cakedec]

Dear Imansbabesmom:

I was in your shoes about 10 years ago: had worn the brace as a teen and didn't think I was a surgical candidate for my double major curve. Then, due to my increasing pain, my dr. referred me to a scoliosis specialist (who mainly saw children, I believe). At that time, my curves were both 60 degrees, so he told me that I was "balanced" and not a candidate for surgery as he could not see anything specific causing my pain on the x-ray. He told me that I was getting one degree worse per year and that was "normal", and sent me to physical therapy.

So I believed him and kept going to physical therapy and the chiropractor for the next 10 years in order to keep my pain under control. It pretty much worked, for the most part. Until last year, when the pain became so bad that I was unable to stand or sit long enough to be employed. I also felt that my curve was worsening as I could now see the lower lumbar curve pushing out my waist on one side. I asked to be referred to a different scoliosis specialist and this one said that I was a candidate for surgery as my curves were now 65 and 75 degrees. He said that there was no great hurry as one degree per year worsening was not a fast rate; the timing was really up to me as to how the pain and disability was affecting my life.

At that time, my 20 year old son was dealing with a life-threatening case of ulcerative colitis and I was his chief caregiver. The dr. said that once I had surgery, I would not be able to care for anyone else; they would have to take care of me. So I elected to wait for the timing to be better; my son needed me to go through three major surgeries with him. Then, once he was better, my husband required foot surgery and my daughter developed stomach pain and began losing weight. So here I am another year and a half later, I think that everyone else is doing better and now it is my turn to look at having surgery.

Anyways, what I wanted to say is that many of us have been in your shoes and we sympathize with your fears about the unknown. We're scared and don't like pain, also!The next surgeon you see may or may not recommend surgery for you; but the timing is pretty much your choice. Your children are young, but if you have someone who can stay with you for the first month afterwards and take care of them, they would be alright. Or, you may decide to go with another treatment plan for your scoliosis for a few years, and wait until they are older and a little more independent to decide on surgery. There are many different options and everyone's path is different.

Best wishes and let us know how it goes,

Deb

[imanbabesmom]

next step

thank you all for your input.

I think at this point I am going to look at specialists in my area ( I pulled some contact info this week, looked them up online and got numbers ) I don't know what my insurance will do, I've got to see how that works out too.

I can't remember what my curve numbers are. My othropedist only told me the degrees that I have increased. --he is really a good guy--- and he did tell me up front "he didn't do backs". He was really just doing this as a favor for me to get an idea of what I need to do next.

I'm going to see what the specialists say.

THank you again!