Curve Progression...considering surgery

[Mobee211]

My curve has progressed into adulthood. I am 28, excercise regularly, not overweight, in good health etc. My curve stats are in my siggy. My issue is that I leave for graduate school in August. I do not want to RUSH into a surgery. However, I will be in grad school for 7 years (MA & PhD program). So, I will have sub-par student health insurance for 7 years. My Dad thinks if I need the surgery I should have it before I leave for grad school...say in May, then have June, July and Aug to recover. I have wonderful insurance now. Over the past 2 years the pain has become pretty terrible! I am worried that if I dont have surgery NOW I will have to wait 7 years and by then the curve may have become even worse...God only knows how fast it will progress from here on out. I have loads to think about and I am frightened out of my mind!!!!

[Susie*Bee]

Thinking of you

Mobee-- Just wanted you to know I'm thinking of you-- what a lot of things you have to factor into your big decision. And yes, it is pretty scary, but remember that it is also do-able. You CAN get through this!

Keep us posted on what happens at your appointment. Are you in school right now--or working??? Insurance is definitely pretty important with such a major surgery, so your dad has a really valid point. It really depends on what the doctor says though, about whether it's something needed at this point or not. If it is, some of the younger, college/graduate school girls that had surgery in December might be able to help you know how you'd be feeling by the time you leave for grad school in August... although everyone is different and it depends on length of fusion and all those other goodies as well. Best wishes with making your plans.

[LindaRacine]

It's often incredibly difficult to know when to have surgery. However, it probably won't be clear about whether surgery is the best option in your case. It's entirely possible that you'll be able to avoid surgery, so not rushing into it is probably a good tactic, at least for now.

Good luck.

--Linda

[briarrose]

Hi Mobee!

I'm in a situation similar to yours. My curve has progressed a lot (see signature). I'm planning on starting grad school in the fall of 2009 and I'll be doing that for 5-7 years too (I'm a junior in undergrad now). I decided to have surgery this summer because it seems like the best time. I have no plans for the summer, insurance will cover it 100%, my husband is able to take off work for 2-3 weeks, etc. Everything just seems to be falling into place. I'm scared and I wrestle with this all the time. I can still change my mind, but my curve just keeps progressing and my doctor thought it would be best to have the surgery within the next few years and this May seems best.

Best of luck with your decision. What are you going to grad school for?

[nzgirl]

I'm in grad school, and I unexpectedly had to have a second surgery mid-way through. I have found that the lead up to surgery was stressful, and although I'm not 'a worrier', I found that the surgery was on my mind a lot and I had trouble focusing on schoolwork. Then, having the surgery has meant additional time off. It is a personal decision when to have surgery, but I don't see any advantage in waiting and watching a progressing curve, and it makes more sense to have it before you have to start university. The other thing I found, and I know a few others who are in my position, is that you start off with a group of people and then having surgery means that you fall behind and can end up with a new group of people. It's just easier to do it before starting, so that you are not having interuppted study. Again, this is just speaking from personal experience, so do what is right for you.

[Shari]

My heart goes out to all you youngters contemplateing what to do!!! Us older ones didn't even have that option, we thought that our destiny was to deal with it for the rest of our lives.

There are so many pros and cons to weigh, I envy your options, but not the pressure of having to make such a touch decision!!!

The younger you have this surgery, it seems the recovery is much easier, and insurance is a necessity. Education is very important, and being in your 30's is not old, even though it may seem like it is right now. You also have to think of your pain level.

Like I said I don'y envy your position, but I wish I would have had the options you have today. But just think of the advances they are making in this field all the time. It's just going to keep getting better and better.

Shari

[txmarinemom]

My curve has progressed into adulthood. I am 28, excercise regularly, not overweight, in good health etc. My curve stats are in my siggy. My issue is that I leave for graduate school in August. I do not want to RUSH into a surgery. However, I will be in grad school for 7 years (MA & PhD program). So, I will have sub-par student health insurance for 7 years. My Dad thinks if I need the surgery I should have it before I leave for grad school...say in May, then have June, July and Aug to recover. I have wonderful insurance now. Over the past 2 years the pain has become pretty terrible! I am worried that if I dont have surgery NOW I will have to wait 7 years and by then the curve may have become even worse...God only knows how fast it will progress from here on out. I have loads to think about and I am frightened out of my mind!!!!

The only thing I'd suggest is carefully consider the accelerated curve progression over the years: You're very lucky to have such a solid timeline ... most don't.

Yes, insurance is important. Pre-op, I'd seen figures ranging from $75,000-$300,000 USD for fusion surgery. Mine fell above the midline.

I'm just going to throw my thoughts out there (you asked ...

It looks like your curve is progressing, and true enough, it could be accurate. Don't forget the margin of error, but even factoring that IN, it appears your thoracic is moving. Adult curves that move (no matter the standard >50° marker ... mine was >50° and stable) *rarely* spontaneously stabilize.

The pain you mention concerns me most. You're 28, and it's hurt for two years. I know what that's like, and knowing what I know now, I'd talk to the surgeon with an open mind.

You may be too low (degree-wise) for surgery, but the argument could be made you a history of past progression, pain, and will soon enter a 7 year period of substandard health care: That may very well be a mitigating factor to do it now.

I can't speak for anyone but me, but I know 3 months to heal from surgical pain to ramp up for 7 years of study would have been a no-brainer vs. facing 7 years of how I felt pre-op (just 6 weeks ago this past Tuesday).

[JamieR]

I agree with Pam. While your curve is still relatively low, it is still progressing at the same time. While it may only progress a degree or two each year, you are in a situation where you will not want to get interrupted by a surgery in the event your curve gets to the point of needed surgery, plus, I would rather do it now than later. You probably will be able to bounce back faster while your younger. Good luck on your appointment with your doctor. Keep us posted on what you decide to do !

[txmarinemom]

Oh, wow, Jamie ... I just noticed you're set for surgery in a few days. Best wishes to you on a speedy and uneventful recovery! What levels are they planning to fuse, and who's doing your surgery?

Mobee, the interruption of a busy 7 years with surgery - or high probability of interruption based on your progression history - would worry me if I were in your shoes. It's tough to explain surgery and recovery to someone pre-op (or never-op, for that matter). The 3 months summer period is definitely sufficient time for recovery should you and your surgeon decide to do it before you start school.

Jamie brought up a very important point: Definitely you'll heal more quickly the younger you are. While I'm not saying you're old (that would just be silly - LOL!), or that you'll be old in 7 years, only that your body is able to handle a lot more insult (referring to surgery) - at 28 than 35.

(An aside ... A very wise friend of mine on here is one of the most young at heart people I know. She has a coffee cup that says "Inside every old person is a you person wondering "What the HELL happened!?"". That's kind of how I felt in my mid-30's ... more things popping, creaking ... things that hurt just seemed to hurt a little more than they did in my 20's. And here I am with 40 looming in July: How did *that* happen??!

The point of all that is most times your body does change from the mid-20's to mid-30's. Being in good shape now is a definite asset - and it absolutely makes for a quicker recovery. That's not to say you can't be in great shape at 30, 40, 50 and beyond.

A question to ask yourself is will you have time to maintain good fitness with a (you didn't say, so I'm guessing), a full course load?

As I said in my earlier post, your curve *is* relatively low, but pain is also an indicator for surgery.

In my case it was clear when I needed to do it, and I certainly didn't have to choose between before or after a 7 year period. I can only imagine you must feel a bit blind trying to estimate how you'll feel on the backside of 7 years. The only tangible factors you have are the last 2 years of pain, and the thoracic progression, however, those are less than promising indicators of how the next 7 years will go.

I'm actually a bit surprised they're even measuring your lumbar curve. Do they have some reason to believe it's structural? Compensatory curves aren't usually measured.

Jamie, I meant to ask you that, as well. (looking at your sig)

My curve was ±53° (and stable): Lung function wasn't impaired at all, and the curve was barely visible (my rib hump only showed when I bent over, and I was never self-counscious of it - even as a kid). The pain I'd had (since about age 10) was the ONLY reason I had surgery.

Have you checked to see how your health benefits will change? This really is a very important factor when you consider it could change the portion of surgery you're responsible to pay by 10's or even 100+ thousand. Definitely a significant amount ...

Hope your appointment goes well!

Regards.
Pam

[Mobee211]

thanks

Thanks everyone. I meet with the doc on April 4th and I decided I am going to wait until summer of 2009 to have surgery (If I need to have it). I had a blood clot a month ago...freak incident from being on the birth control pill and on a long cross country trip. I am fine, caught it early, am off the pill and my risk of having another is the same as someone who has never had a clot-less than 10%. I am on warfarin as a blood thinner for 6 months though. My PCP said she would want me to wait a full year before anything surgical. I trust her. I do not want to rush into it.

The pain has gotten worse. I try to keep limber and am seeing a chiro for the pain. A lot of you mentioned recovery time being faster when youth is on your side. I would rather have the surgery done in my 20s or 30s rather than wait until age 50. My company will let me remain on their insurance through cobra and my father is going to help me pay the premiums for that. So, the student health insurance is something I no longer have to worry about. I explained everything to the CEO of my company and he is wonderful and very supportive. I will have good insurance when (and if) I need surgery next summer. Anyway, I am going to Miami U of Ohio in the fall. I am pursuing a MA, and ultimately, a PhD in Mass Communications (media, law and policy). My goal is to teach in higher education. I was offered a full scholarship and stipend for my work as a research/teaching assistant. I am very excited and can hardly wait until August when I 'ship out.' Thanks so much for your words of wisdom I will update you once I hear what the surgeon has to say

[txmarinemom]

Mobee ... GIRL. You were very, VERY lucky with the outcome of the blood clot ... thank goodness you're okay!

Several years back, I worked with a girl (mid 20's, non-smoker) who had a stroke attributed to the pill. She ended up with very little (if any) damage, but it was touch and go the first 6 months as they tried to see how much would resolve with rehab.

I'm on a low dose pill (even though I had a tubal ligation over 18 years ago) just to block menstruation. *However*, had I not stopped smoking in Sept. 2006, there's no way I could take the pill (your risk of stroke over 35 and if you smoke increases by a shocking 75%!).

Aside from that, I pretty much would have been wasting my time with fusion surgery since smoking contributes to pseudoarthritis.

Your PCP sounds wise with the advice on no surgery. Surgeons don't even want you taking anything but Tylenol for 10 days pre-op due to increased possibility of bleeding. I can only imagine the risk of Warfarin even months prior ...

That's wonderful you have at least 18 months (the period you can continue coverage through COBRA) to heal from the clot, get your health back on track, and actually time it for summer 2009 or so (where you can take a few months off and heal without being rushed).

I'm sorry you're hurting, but it sounds like all the details are falling into place - and every issue you resolve removes a bit of the worry .

BTW, kudos on your full scholarship ... you should be quite proud of yourself, and I'm sure your parents are, as well!
__________________________________________________ ________

Everything below doesn't assume you are or aren't having surgery ...
it's simply some alternatives to consider for pain relief, and ways to
keep your body ready incase you DO decide on surgery.
__________________________________________________ ________

Where exactly is your pain? (I'd guess between your shoulder blades with a thoracic curve?)

Is chiro working for you? It never did much for me, and unless I actually spent some time n a traction bed first, did 15-20 minutes of heat packs, AND got a massage first, they could barely get a crack out of me. And knowing what I do now (that I had two 3mm cervical disc protrusions), it's a wonder the chiro didn't cause MORE damage).

Since you have insurance, have you considered getting a referral to a good pain management (anesthesiologist) doctor? Modern techniques include far more than sending you home with a bottle of pills, and some people are really helped by treatment. It's certainly worth a shot, and far more long lasting than chiro - even when it *does* work.

Rolfing and myofascial release massage can also help (again with longer effects than chiro). Sometimes, insurance will even cover myofascial release prescribed by your doctor. My insurance now won't pay for it (and the point's moot anyway ... because my back doesn't hurt - yay!), but the insurance I had 10 years ago did.

Don't forget yoga for flexibility (and stress relief!), and the blow up balance balls are fantastic (and cheap!) for building core strength - and you'll need that if you do decide on surgery.

One more thing, flexibility is good, but whatever method of exercise you choose, be sure to build up your abs, legs, arms and shoulders.

DO NOT BUILD UP YOUR BACK MUSCLES. Work them in both flexion and extension for stretching, but you don't want to bulk them up as it simply causes more to section during surgery (and more pain healing). I quit playing ball about 3 months before my surgery for this very reason.

Anyway ...

So glad you're okay, and that you've been given some time to see what your body tells you to do. It's odd to think a bloodclot may have actually been a blessing in disguise. Life is funny that way.

Ideally, the best scenario would be a slowing (or halt) of your curve progression, and an effective way to manage the pain.

Even if you decide fusion is best for you down the road, things are quite a bit more rosy than your first post!

Best regards,
Pam

[Mobee211]

Thanks Pam. Yeah I had a bit of a FREAK OUT there for a week or so. A lot has happened this past year. I lost my mother to breast cancer last July. It has been very tough for me. Then the pulmonary embolism issue...yes I was VERY lucky. And then to find out my scoliosis curve was progressing...it made me panic and feel like my life was falling apart before my eyes. Anyway, I am sure things will fall into place. They always do!

Where exactly is your pain? (I'd guess between your shoulder blades with a thoracic curve?) Yes. The pain is mostly on the right side of my upper back. I get a lot of burning over my ribcage, and I also have pain in the middle of my back...just below the ribcage. I have thorocolumbar scoli...though I am not sure exactly HOW that differs from other scoli types...another thing to ask the doc.

Is chiro working for you? No. The pain is not diminished at all. I have several pinched nerves up and down my spinal column (as evidenced by temp scans, flexibility tests with the chiro...but then again, how accurate they are I don't know...)

Since you have insurance, have you considered getting a referral to a good pain management (anesthesiologist) doctor? No, and I never even thought of that! I was just given 800mg ibuprofin from my PCP to help with the pain. I wear heating pads on my back a lot. Interestingly enough, the pulmonary embolism started with pain in my chest area...radiating to the ribcage and shoulder on my right side. I always have pain there anyway...from teh scoliosis. So I thought I had pulled a muscle or that the scoli pain was just getting worse. Only after 3 days did I realize soimething was very wrong when it hurt to breathe, swallow, bend over etc.

My insurance does not cover any chiropractic treatment or alternatives to Western Medicine

thanks again for all your advice

[JamieR]

Dr. Matthew Geck is doing my surgery. He is at Spine Austin in Austin, TX. I think he is planning to fuse C2 or C3 to maybe L1. They put the measurements on all three curves on the x-ray but I do believe that the lumbar curve is only compensatory, not structural. The thoracic is structural and on my last visit my doctor said that there was some evidence that the cervical could be structural as well. I am having surgery for a couple of reasons. I have had a significant increase in pain. In addition, the main two reasons for my surgeon wanting to operate was 1) obvious progression, and 2) for my low back health. I have a pretty bad degenerated disk that needs a disc replacement and my doctor said it would be better to do scoliosis surgery now to avoid a major reconstruction later.

[Mobee211]

Hey JAmie-let me know how it turns out! I went to a chiro and was told I had many pinched verves along the spine. I have a significant ribhump, which leads me to believe there is significant rotation of my vertebrae. I am not sure if that makes any difference...I would take surgery if offered it because of the pain, the obvious progression, the fact that I am young NOW and don't want to wait until I am 50 or so, and finally the cosmetic deformity.

[JamieR]

I will let you know how everything goes. My surgery is at 7am in the morning. I will try to get back on and posting as soon as I feel up to it !