Am I over-worrying?

I've been reading this site every day over the last 6 months and posting comments where I have any input at all. I have learned such a great deal from everyone, and feel amazed at all the interesting questions & feedback.

Some background on myself - I am 25 years old and have a ~45 thoracic curve. It has gotten ~11 degrees worse in the past 9 years. From everything I read here and on the internet, this is quite normal.

I guess the only thing to do is go back next February (a year from my last xrays) and check to see if the curve has worsened. But I have an overwhelming urge to run out and get multiple opinions. Not that I am in a rush to have surgery, but it gets to me that I have no idea where this will go. I hate the idea of getting older and more "deformed" and potentially in pain. I'm sure there are so many of you out there that share this fear. But am I stressing over nothing if it's really not that bad (yet)??

I recently called Dr. Boachie-Adjei's office since he gets such wonderful "reviews" on this site. He unfortunately does not take my insurance. I feel stressed over going to the right doctors and getting the best advice.

Am I too young to be worrying about this? Should I just wait until I'm in my 30's and have already had children?

Sort of just venting here but any feedback is always appreciated.

Jamie

[BaDnOn]

I wonder of similar things. You are adorned with a 45 degree curve and, it seems, you aren't experiencing great deal of pain. This is something to feel good about! I possess a 18 degree "S" curve which showers my psyche with discomfort and torments me with an abundant amount of burning pains.
I, like you, contemplate the future, striving for the dream while attempting to prepare for a possibly slow and horrible demise. I will grow older inevitably and the grips of age and decay will begin to take a stronger hold. I won't have children myself. No use in putting anyone else through this nonsense.
What drives me is the fire illuminating the memory of Those Perfect Days where there was no pain and there was only the beauty of existence and the hope that it would continue forever. There will at one point be a loss of that enduring physical torment and a reawakening of that wonderful spirit within... I await that moment.

Like you- Venting,

-BaDnOn

[Cakedec]

You are on the borderline

Dear Jamie,

Unless you are in disabling pain, most drs. will probably not recommend surgery with a curve in the 40's. I lived with my scoliosis relatively pain free until it got into the 60 and 70's ( degrees). Just had surgery which corrected it back to the 40's, probably where yours is now.

Now I can feel those hard stiff rods between my shoulders and can hardly move my arms or body for fear of hurting myself. Surgery and the recovery is no picnic and I wouldn't recommend it unless your curve or pain is severe or disabling. Keep tabs with the dr. as to how your curve progresses, but enjoy your metal-free back for as long as you can!!

Deb

[JamieAnn]

Thanks Cakedec,

That's a bit disturbing that you can actually feel the rods. But anyway, what you said is what the doctor said regarding surgery only if I have pain. But my concern is, like yourself if I had surgery later on than it would bring me back to where I am now. I keep thinking if I just get it over with early, I could have a "straight" back (and oh how great that sounds!!).

Anyway, thanks for your input. It is much appreciated.

Jamie

[sweetness514]

Jamie,

there are pros and cons to getting the surgery earlier rather than later. Since you're still young, you can wait and see a few years and still get a good correction, plus the surgical techniques evolve all the time. Surgery is no guarantee for pain, even if I do believe it can get rid of a lot of scoliosis pain. In some cases it can bring other types of pains down the road, but for some like me pre-op with a 60 degree curve and pain it wasn't much of a choice. It's not an emergency, but it is good that you're thinking about all the possibilities and keeping an eye on your scoliosis.

Good luck.

[bluestone]

Im 42 now with a 60 degree curve.I have good days and bad days with pain(all according to what Ive done tnat day).
Ive been told by 2 specialists that surgery is not the way to go.Its hard to accept that I may have a difficult old age because of scoliosis but I try to not worry about the furture.My curve hasnt progressed in 4 years so thats something to be positive about.
Ive started PT and am learning to swim so my aim is to keep as fit as possible as Ive been told it will make my pain more copeable.
I just think if things get worse and I end up with an operation in my 60s then I just have to face it-whatever will be will be!

[Jimbo]

Hey bluestone, why cant you get surgery, why are the surgeons hesitating? If my scoliosis gets near 60 degrees I will get the surgery. Do you have any deformity from the curve?

[txmarinemom]

Now I can feel those hard stiff rods between my shoulders and can hardly move my arms or body for fear of hurting myself. Surgery and the recovery is no picnic and I wouldn't recommend it unless your curve or pain is severe or disabling. Keep tabs with the dr. as to how your curve progresses, but enjoy your metal-free back for as long as you can!!

Jamie,

Yes, avoid surgery if you can (you have a progressing curve, however ... and past progression indicates future progression). Your curve is *probably* not going to stop without intervention.

I do NOT feel my rods (nor do I believe that's normal) and I am NOT afraid of moving my arms or body. Cakedec, that level of stiffness is usually caused by lack of activity. What are you doing to stay limber?

BTW, Jamie, I'm back playing softball, and I'm *sliding* ... at 8 months post-op.

Just another $.02.

Pam

[bluestone]

Hey bluestone, why cant you get surgery, why are the surgeons hesitating? If my scoliosis gets near 60 degrees I will get the surgery. Do you have any deformity from the curve?

A back surgeon did say that surgery would be too risky and wouldnt make me pain free.I am very mobile and flexible so I guess they dont think Im bad enough-if only they could SEE my pain!
I dont look too deformed-people dont tend to notice it although I have a very visable right hump when I have no clothes on and if I wear tight tops,but my hips and shoulders are level and I have waist definition-I dont stand crooked although I do feel it.

[tree]

Jamie--

Congratulations on at least thinking about your back right now! I have a very similiar history and in my 20s I just ignored it. I hoped I would never have to think about it again!

I don't know the answers, but I can tell you what questions are going through my mind now in my mid-30s. I am now at 60 degrees trying to decide whether to do surgery. My husband and I are now trying to balance whether to add another kiddo and whether to have surgery. We are trying to decide if I can handle the lifting and holding of more kids (we have 3 right now). We are also trying to decide timing. How old should the kids be? What if I am in worse pain and have a really hard time meeting my kids needs after surgery? I have learned to deal with the pain I have, but what if surgery makes it worse? What if this begins a string of years of multiple surgery?

I don't know if I made the right decision to wait or not. I was almost pain free most of my 20s and early 30s. In a lot of ways, I am glad I lived those years without thinking about it and just enjoying my life and family. Now however, the decision is so complicated because I have little ones depending on me. I am also fighting the age clock more now. My doctor has really encouraged me to do this sooner whether than later because of my age. He says age makes the biggest difference. If it wasn't for age, I would just put this off for another decade.

Well, there you have it--ramblings of someone ten years down the road.

Tree

[huskymom]

Hi Jamie, you and I are kinda in the same boat. I am 28 and my spine doc wants to do surgery on me soon too. I am wondering the same as you if I should wait to have the surgery until after I have kids.
Are you thinking about surgery soon?

[lauriek]

i'm 55 yo female and have not had surgery. i have mixed feelings about that choice.

My curve has progressed from 55/35 to 80/55 in the last 30 years. So it is obvious and has impacted my self-esteem and social life, which was already challenged without the deformity. When I try on clothes at a store with the two mirrors, I am shocked at how bad it really is. I avoid looking. And recently, although I've never had significant pain, I've had increased breathing problems.

On the other hand, up till now I've lived my life without any physical restrictions. I'm a landlord and work on rehabbing houses (when I can kick myself into gear). I also worked as a union plumber when I was in my 30's which was very physical work. It was in the late 1970's, the first time the union had accepted women. It was an adventure. I like that I've had that freedom. And as you've read, surgery is not necessarily the cure. There can be complications.

If I could go back, I think at your stage, I would have done a more thorough and committed job of exploring alternative therapies while I still had the time and a little wiggle room. An excellent book to read is "Unwinding" by Martha C. Hawes one of the few adults who can document (thru photos and x-rays) improving her 47/26 curve to 28/13 in middle age through alternative therapies. I found it inspiring.

[Debra JGL]

Jamie - When I was in my mid 20's, now I'm 43, I went back to the doctor who I had seen when I wore a Milwaulkee brace because I was beginning to have some back pain. He quickly told me the curve does not progress after adolescence, said there was nothing he could do, and charged me $50 bucks. I didn't think much about it (except that my car payment might be late). As I got into my later 30's the pain and discomfort was getting worse and I went to see another orthopeadic surgeon in Philiadelphia. My curve had reached almost 70 d's. He told me he recommended surgery. I was so happy and hopeful that I had this choice. Well, if having, or not having, surgery didn't have many risks this would have been an easy decision. Over the past five years I have gone for yearly visits to check in on progress and check out different opinions (3 doctors in total). All my docs, including Boachie, have said the same thing. This is something I have thought about almost everyday over these years.

I have decided to have the surgery, because of my worsening pain, worsening breathing, and worsening deformity. Though I do feel ready now, I am going to wait probably a few more years until my kids, 8 and 11, are a little older and more independent. I have very little in the way of extended family, and in the outside chance (I do not expect this, but must consider it) my recovery is longer or more difficult than normal, or something worse happens to me I want them and my husband to be in a good position to take care of themselves. I know some will disagree with this reasoning, but in the end we must come to our decision based on our own unique set of circumstances, and in our own time.

I really appreciate this thread because I have felt so unsure for so long, but still wanting to be a part of this support group because of living with scoliosis everyday. Choices can be scary, but I'm very grateful we have them. I think it's natural to be concerned, it's your body and you want to feel good about your choice.

Deb

PS - I don't believe Boachie takes any insurance, but if you want to have him as a surgeon you can pay out of network. Unfortunately, that's as expensive as it sounds.

[rainbow2010]

You talk about being able to feel your rods. I cannot feel mine, but I can feel my daughters. The top of her fusion is T7 and there is less muscle and tissue in that area to cover the rod.

[Karen Ocker]

ready for surgery but waiting

Debra:
Although you want to wait until your children are older consider these facts: The older you are the tougher the surgery and the less correction obtained. With significant curves like yours(and mine were) they could progress at a rapid rate causing you significant disability, that would significantly impact your ability to care for your children. If you are experiencing any shortness of breath now, believe me, it gets worse. I lost lung tissue and it will not come back. I wished I had done my surgery in my 40s but did not know I had the option.

Yesterday I was looking at some old pictures. I looked so crooked and deformed and I thought I was good at camouflaging. This was through my
40s and 50s.