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livingtwisted

“The scoliosis saga”

Monthly Archives: November 2010

30/11/10 Pain and hitting the wall

It’s been a tough start to the week. Some pain off and on the past two days. That’s pretty normal after a long weekend. I think it has to do with readjusting to sitting at a desk all day. But I need to be aware of that and remember to get up and walk around, and drink more water. The good news: the pain is mild and gone completely with three Advil.

But because of the pain, I’m reluctant to add any strength training. I had just started to do crunches on the inversion table this weekend and I’m afraid it’s too much strain on my neck. This isn’t the first time I’ve “hit the wall”. It’s been a month of positive changes. But I may be hitting the plateau where it feels good, but not better than the day before.

Current goal: Stay the course. Don’t give up. Do what I can safely do without causing pain and get back on track as soon as I can. But do SOMETHING every day. Slow and steady wins the race.

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30/11/10 Therapy

I had my first therapy appointment this morning. I was afraid I wouldn’t know what to talk about or how to act, but it was surprisingly easy to jump right in. First learning (or rather, confirmation, since I guess I already knew it): I bottle stuff up, rather than expressing it. I assume people around me have it worse than me and that we can’t all vent at once. What does this have to do with scoliosis? It’s really just a theory and of course there are more factors at play, but some kids get stomach aches or wet the bed, I got a curvy spine.

I’m not expecting any miracles. But when I walked out of there I was emotionally drained, but physically felt pretty good. Possible goals of therapy:

1) Put the past behind me so that if any physical correction is possible, there’s no emotional baggage holding me back

2) Learn to cope with current stresses in a better way to prevent myself from internalizing it in the short term (scrunched shoulders = headache) and in the long term (possible progression?)

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28/11/10 Red Hot Ear?

Last night my husband and I were watching a movie and when I got up off the couch afterward my ear started burning. It was red, hot to the touch, and stung a little. At first I thought it was an unfortunate place for a bug bite. We do have spiders in the house a lot, and the occasional flee too. But after closer examination we couldn’t find any bumps or bites. I’m actually known for turning colors at the drop of a hat and having unusual skin reactions so I was willing to accept that my ear just felt like being red. But the husband made the often-dangerous-when-it-comes-to-any-medical-symptoms suggestion: look it up.

I pulled out the laptop, but assumed all I would find was that it could be any number of things ranging from “you’re tired” to “you’re dying” and everything in between. And it was true. According to the internet, it could be any number of things: fatigue, allergic reaction, stress, high blood pressure, and there were only a couple of mentions of cancer. What was surprising is that it actually had a name: Red Ear Syndrome. It occurs in one ear at a time, usually at night, and usually goes away after a couple hours (which it did). There were different causes according to different sites, but this one stood out to me:

http://www.severe-headache-expert.com/red-ear-syndrome.html

I realize how easy it is to read something on the internet and say “that sounds like me!”. But that doesn’t mean it isn’t true. It was the relationship to the neck and jaw that jumped out at me. Since I started doing full inversions, it has been putting extra stress on my neck. It is just a little extra discomfort while hanging since there is no longer a headrest to support the position of my neck, but since it didn’t seem to be lasting once I was upright again, I wasn’t worried. But maybe it is doing more to my neck than I’m aware. I would hate to miss a warning sign when it comes to your neck. But maybe it’s a good thing, maybe it’s just improved circulation?

Only time will tell, but now that I’ve stumbled on this headache website, I think I’ll do some reading. Headaches are my most dreaded of pains. I’ll trade those for a red ear any day.

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26/11/10 Still a little fuzzy on C.L.E.A.R.

Since I’ve been hanging out on the FixScoliosis.com forum and they seem to have a preference for CLEAR, mainly because the forum seems to be run by a few vocal chiropractors who practice CLEAR, I thought I’d take another look at their treatment program. Reviewing their wesbite (www.clear-institute.org) everything they explain about the system makes sense to me: create flexibility, make corrections, train your brain to hold the correction, and give you the tools to maintain it. And they have some fancy gadgets that make the “correction” more than just a regular chiropractic adjustment. Although there are some things left unexplained, like how vibration is going to help hold the corrections.

I’m not a doctor and I haven’t had the treatment myself so I can’t comment. But the actual science of it aside, it seems to me that the way they are presenting themselves is what turns me off more than any one piece of information. There’s something slick and “marketing” about the whole package. It’s not dishonest, it just doesn’t tell the whole story. Many of the other treatment programs out there go out of their way to make it clear that there is no cure for scoliosis. And that some cases are better candidates for improvement than others.

For example, I was looking for their position on improvement in adult cases as advanced as mine. All I found was this response on the FAQs page:

Q20.

Am I too old to obtain scoliosis treatment?

Answer:

One patient, Marvin, was 82 years young when he received treatment.

No mention of the difference between a skeletally mature case and one where the patient is still growing. No mention of the specific goal of treatment (i.e., improvement vs. stabilization and pain management). They provide this one example, but don’t tell you anything more than that he received treatment. How severe was his curve? How long was he in treatment for? What was the result? Good to know they were willing to take his money, but what did they promise him in return? It makes it feel like they are hiding something when in fact after digging through interviews and testimonials it seems that they could have provided some real honest information.

CLEAR does make this blanket statement:

Results are not guaranteed – they are earned, by patients who are willing to work alongside of the doctor.  The traditional methods of scoliosis treatment, bracing & surgery, are considered “passive” therapies, in that the patient has the procedures done to them; the doctor designs the brace, the doctor performs the surgery.  CLEARTM Institute’s method, by comparison, should be considered an “active” process – that is to say, the doctor teaches the patient how to do the procedures, and the patient does them.

While I agree that the best solutions out there require you to be an active participant in your treatment, the way this statement is worded releases the doctors from any responsibility to deliver results. I wonder if this is one of the reasons that these types of treatments have not been able to get the consistent results, and therefore acceptance, needed from the general medical community. How do you make patient participation more concrete and measurable? And what can be done to hold the doctor administering the treatment more accountable for the outcome?

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24/11/10 Progress on the plan

I’ve made some minor progess on the plan…

* I made a rolfing appointment for next Saturday. Can’t wait to see what it’s like!

* I got a response from Salem Hospital that they couldn’t find my records. I spoke to them and they said I could resubmit it and they would try again. But then I noticed on the handwritten notes my mom sent that it was actually the Salem Orthopedic Surgeons, Inc. I called and they said they only keep records for five years. I may have to accept that I won’t ever see my original x-rays.

* I also made an appointment with a therapist for next week. I’m really just picking a name off a list of therapists in network so we’ll see how it goes. Maybe at least by going once I’ll get  better sense of what I want out of it.

Still to do…

* Make an appointment with Dr. Pashman. I was hoping to have my old x-rays so he could analyze the progress, but I’d be curious to hear what he has to say anyway. Even though I’m pretty sure I don’t want surgery, I’ve decided to pursue all paths because who knows where good information can come from.

* Make an appointment with Dr. Lamantia re: Spinecor Brace, Schroth exercises, and Neurological testing. I think I’ll wait and see how the Rolfing goes first because they ask that you not do any other body work at the same time.

And I went to full inversion today on the inversion table! I only did it for three minutes, but so far I just feel good, no pain!

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23/11/10 Head Up, Shoulders Back

I’ve been noticing lately that when I remember to be aware of my posture, I’m already standing fairly straight! Well, except for the scoliosis and all. But my shoulders are above my hips, head above my shoulders. I attribute this not to my amazing powers of mental persuasion, but to the inversion table. I think hanging with my arms over my head is opening up my shoulders, making it easier to stand un-hunched.

My only concern is that it is also causing my front ribs to pop forward. There’s no noticeable reason for me to think this — just enough times doing yoga and the instructor corrects the position of my rib cage when doing any pose with my arms stretched overhead. Hopefully this awareness of my tendency to overextend will help me keep it in line. But I also think that when I make it to full inversion the stretch will be more equal on the front and back body.

Speaking of ribs, I had an A-HA moment the other day while doing some light stretching on the floor. I was doing a twist from yoga and realized why the Schroth people say not to do twists. I’ve always thought they felt good, especially going against my rotation. But what I noticed is that when I twist my torso to the left, the left ribs which are the narrow ribs to begin with compress even more. It’s like the back ribs stays concave while the front of the ribs come to meet them. It’s the opposite affect of what I’ve been achieving with breathing on the inversion table which expands the narrow rib cage allowing the tight muscles in the concavity to stretch.

The other thing I noticed today is how sore my butt is! And in that good I’ve-been-working-out way. But I haven’t been exercising at all so I was stumped. Could the inversion table do it? I don’t see how. Could it be from the massage? I don’t remember her getting that personal. I was describing it to my husband, “It’s like I’ve been doing squats without the work!” And that’s when it hit me. I HAVE been doing squats. I’ve been very careful lately when I need to reach the floor to bend my knees and squat instead of leaning over from my back. Well if all that bending is making my butt sore, imagine what it was doing to my back!

And it’s true I’ve had a lot less pain lately. Aside from Sunday night and Monday morning after the massage, I can’t remember the last time I took ibuprofen. Looking back at my posts it was on the 17th. That’s pain only twice in one week! Not that long ago I was taking ibuprofen every morning, just to get the day going. I’ve also noticed that my digestive track — IBS, hemorrhoids — is much better. My guess is that’s related to quitting coffee and soda, but it could also be the anti-depressive affects of the inversion table. Either way I’ll take it!

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23/11/10 The weirdest of the weird

In my recent flurry of research I came across the National Scoliosis Foundation Forum. I’m generally not one to make friends with people I’ve never met, but in this case it made sense. A group of people who understand exactly how you feel, physically and mentally. A lot of good information from everyone’s individual research pooled in one place. And a lot of positive support. I spent many hours skimming through old threads for nuggets of information. And I felt a closeness with these people even before I made a single post myself.

Actually, it’s when I started to post that I became more aware of the dynamics. The forum is basically a microcosm of the whole medical community. At first I was impressed that such an established organization would distinguish between those opting for surgery and those trying alternative methods. How forward thinking! WRONG. They do have these categories, but those seeking alternatives are constantly bullied by those who have chosen a more traditional route. And a vocal few tend to speak on behalf of the group.

There seems to be a double standard where it is acceptable for those in favor of surgery to post negative comments about anyone trying anything new. But as soon as someone announces they have decided on surgery, there is an outpouring of support and that person can do no wrong. I’m not suggesting that they belittle the person for giving up the fight and settling for what passes as a solution. Just the opposite. I’m suggesting that they also encourage anyone seeking out a better solution. After all, what harm is it causing?

The only clear arguments against alternatives that I have heard so far are…

There is no evidence to support that this method will work. It doesn’t get more close-minded than this. How does one expect any progress is ever made? Progress requires someone to take a risk and try something new. They might fail, but we won’t know unless they try. Someone had to be the first surgeon to perform a spinal fusion and someone had to be the patient. And there’s a lot more risk involved in that than any of the alternatives currently on the table. But I bet these opinionated fused patients are happy someone took that risk to make the option available to them.

And…

I hope my insurance isn’t paying for your experimental treatment. Do they know how much surgery costs in this country? And don’t forget all of the medications and follow up they’ll need for the rest of their lives. Surgery is proven to have a clear result whereas most alternatives at this time are not, but it’s questionable whether the result is positive enough to deem it medically necessary. Most fusions are performed preemptively in order to prevent the very rare cases where not intervening can be life threatening. I would argue that the majority of fused patients could have lived out their lives as normally (if not more) without fusion as they have with fusion. That’s a lot of extra cash that could go into researching alternative treatments.

Maybe one of the reasons that surgery was sounding so appealing for a while was that then I could be in the group of “normal” scolios. I could get all their praise and support for how brave I was. Currently it seems that even within this community of weirdos, I’m still one of the weirdest. So do I need this extra emotional roller coaster? I have read more than one comment from someone saying they rarely visit the forum anymore because of this particular dynamic. But I somehow feel obligated to stay in an effort to grow the group of weirdo alternative thinkers and not let them bully us out of the medical system.

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22/11/10 Vanity or Deformity?

Any time I find myself swaying toward surgery, it’s usually more of an emotional tug. Wouldn’t it be nice to be straight?! And normal. But I’ve never really thought of myself as deformed. I’ve always viewed it as more of a body issue. Some people think their nose is too big or their hair is too curly or their arms are too long for their body. I think my spine is too curvy. It just so happens that doctors agree.

Everyone has at least one body part they would love to change. Now wouldn’t it be great if you also had a medical reason to change it? Haven’t you heard of someone who had a nose job because of a “deviated septum”? DISCLAIMER: I understand that some people really do have a deviated septum. I also understand that people with scoliosis choose to have surgery for a variety of reasons and I don’t judge them for that. This is simply an illustration of how I am currently feeling about surgery. I also reserve the right to change my mind at any time.

So like any body issue I do my best to disguise it, without letting it get in the way of life. I will walk the beach in a bikini or sip cocktails in a strap-y top, if that’s what the occasion calls for. Sure shopping is a little more difficult to find clothes that are flattering, and it can sometimes be really depressing (although not as depressing as the pain after spending an afternoon walking the mall). But I think I’ve been fairly successful at — as Tim Gunn would put it — making it work.

Recently I was reading something I wrote about five years ago that had a list of fears about my future with scoliosis. One of them was how was I going to find a wedding dress I would be happy with (clearly I had my priorities straight as there was no mention of finding a husband!). I wonder if this is something many young women with scoliosis think about.

When I started the hunt for the perfect white dress I thought I wanted to keep things low key and find a simple elegant dress from a department store. But I quickly discovered that department store dresses are thin and slinky, but many bridal dresses are made to be structured and flattering on any figure. After dragging mother, sister, and baby niece to several bridal shops I ended up finding the dress that perfectly complemented my curves. It was a drop waist which elongated my torso, had plenty of rouching which covered my front rib and any other little bumps, and the waist and rouching was all assymetrically angled to create the perfect optical illusion! It was strapless which meant showing some of my back, but it was straight across in the back for the minimum exposure possible.

I felt beautiful wearing it. Would I have preferred to have more dresses to choose from? Sure. But does it matter? If I can accomplish this small task, when the time comes maybe I can get through every other worry on the list — pregnancy, chasing kids, getting old — one step at a time.

Some pictures of said dress…

wedding photo

From the left? Looking good!

wedding photo

From the right? Not bad.

wedding photo

From the back? It is what it is.

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22/11/10 Minor setback

It took getting a massage yesterday to be reminded that every change — good or bad — causes pain. The massage itself was fairly gentle. It was even enjoyable despite the fact that I found myself wishing the masseuse would dig harder. I also found that I no longer enjoy laying still for an hour (I’m thinking Shiatsu next time). But driving home I felt as if my jaw was hanging lower than usual. Great! She released some of the tension and clenching that causes my neck and head aches. But then a couple hours later there it was — pain in my head and neck.

So is my goal to be pain free as often as possible? Or to try every possible treatment that might add to a straighter me even if it hurts along the way?

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21/11/10 All or Nothing

No sooner had I finally realized and accepted that I can’t “fix” my scoliosis, did I start a new whirlwind of research into the latest in alternative therapies. It started as a way to see if there’s anything new out there that can help me manage my curve. But with all the possibilities for managing it, come hope. There are anecdotal cases  — Martha Hawes being the best documented — of curves improving through methods other than surgery. So it’s easy to get excited and start to think about the extremes of what might be possible.

Ironically one of the things that made me think it might be possible to get some degree of correction was doing more research into surgery. I’d always been so anti surgery that I never took the time to learn much about it. But now seeing all the videos and before and after photos, it is more obvious to me just how flexible the spine is. Yes, to have it correct instantaneously requires a lot of torque and it’s still not 100% straight, but it can be done. And the ribs just come right along with it. Someone told me once that my ribs had now grown into a new shape that was irreversible, but from seeing rib humps disappear after surgery it is clear that it isn’t impossible to reverse it, in fact the ribs immediately move right back into place.

Any time I’ve tried an alternative therapy, it’s been just one thing at a time. Usually, just the bare minimum to keep myself feeling ok (if I’m doing it on my own) or the minimum that the practitioner recommends. But when I ask myself what I would do if my kid got scoliosis, the answer is EVERYTHING. It seems to me that you need to treat every aspect of the problem all at once. You need …

* physical touch from others (massage or rolfing)

* to be empowered to take control of your own body (yoga or other movement work)

* the right routine of physical activities that stretch and strengthen with minimal impact (swimming, walking, yoga, pilates)

* structural guidance to understand what is straight (bracing, feldenkrais, Schroth exercises)

* emotional support to let go and accept who you are (therapy)

(Note that I have not tried all of the examples above and I understand these are unproven methods. They simply illustrate what I believe to be five important components.)

I’ve never tackled all of this at once. Part of the reason is the affect on your wallet. But I’d like to give it a shot before things get any worse. The reality is, I’ve been told that some of my lumbar vertebrae have already started to fuse due to arthritis so I know that there are limitations. And I would imagine without metal it would require constant upkeep for permanent results. But it feels like now — in a household with two incomes and no kids — while I’m still relatively young, would be the time to try.

The toughest part is that mentally it requires me to really want to change. And I was just learning that I don’t have to. So do I let go and accept who I am or give it my all?

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