RE: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!

February 17, 2010

Oh, Melody, this is wonderful!

As someone else wrote, the past day was " cranky and pain filled " for me.

It's now a little past 2 a.m. I was just reviewing some Feisty posts

before trying to get myself to sleep. I was lounging here at the

computer feeling very down and regretful about losing it in an earlier

post (in which I overreacted, got mindlessly defensive, and bit

someone's head off, so to speak) . . . and then I happened to read your

intriguing query to Andy about " mushrooms. " And then I read this

follow-up post clarifying the mushroom-post. As we used to say many

moons ago, " what a stitch " ! Thanks so much for the first hearty chuckle

I have had in many hours.

PS I was amazed and intrigued by your artifical-disks story. I think you

may be our first member to have even one artificial disk, let alone

three. How absolutely terrific that this took care of your pain!

Best,

-- In , " MELODY LANE "

<melodylane2195@...> wrote:

>

> Hi Andy,

>

> I just re-read your message.....the mushroom reference was taken out

of context. You were referring to a " pain process " ....that

" mushrooms " ......LOL!!

>

> Anyway.......I LOVE my new neck! The artificial disc replacement

surgery was the best thing that has happened to me. Before I had the

surgery, I was using Fentanyl patches or extended release morphine plus

norco several times a day for breakthrough pain. I no longer need

narcotics and feel like I have my life back. My spine doesn't

bend....but I can walk, work and lead a fairly normal life again.

>

> Have a good day!

> M

> OFFICAL LAUNCH OF THE FEISTY MEDIA

CAMPAIGN!

>

> Hi, Everyone --

>

> After batting this back and forth with co-moderator Maas,

I am convinced that a flurry of individual letters -- a deluge, if

possible! -- has a better chance of perking up interest than my lone

little post regarding prevalence statistics, etc. And if you don't plan

to write immediately, that's o.k. too -- why not a bunch of letters this

week, next week, and the week after that? The more often " flatback " pops

up in Dr. Oz's mail, the more likely he is to realize that this is a

legitimate and not a medically rare or exotic topic -- a subject with a

potentially large and concerned viewing audience.

>

> In considering what to write, feel free to use your personal story

as you may already have written it for this group. But whether you do

that, or write something entirely new, would you kindly send a copy to

the group for reposting? This will give us a clear and precise idea of

just how many members are taking part in this campaign, plus it will

provide a fascinating new chronicle of our " collective narrative " to

archive at the site.

>

> .

>

February 17, 2010

Thanks for the compliment, Andy, but I couldn't have said it better than you did.One small parenthetical I might add: The neck-curve is not part of the flatback deformity but arises secondarily from one of our little compensatory mechanisms. At a certain point in the progression of the flatback syndrome, we can't actually see anything ahead of us because of our bent-forward posture. We have to crane or hyperextend our necks in quite an unnatural and stressful way so as to force our heads up -- say, when walking toward an intersection, to find out whether the light is red or green, or to see whether a particular item we want in the store is on the highest shelf. If we did not do this artificial neck-maneuvering, all we would see, all the time, is the ground below us, thanks to our rigid hunched-over posture.The neck-craning eventually takes its toll, causing an arthritic and very painful cervical region. This specific condition of the neck does not necessarily require any special further treatment. In Melody's case, she did need further neck surgery to relieve her pain. In my case -- although I had the most severe deterioration and chronic pain elsewhere along my spinal column, both before and after flatback revision surgery --Dr. Rand told me that my neck would take care of itself post-op, when I no longer had to keep hyperextending. I found this hard to believe, but sure enough, revision did cure the neck problem for me. I don't mean to say that my neck will ever be totally normal -- and who knows what may or may not develop in the future? -- but so far so good (knock on wood). I do seem to need a small pillow under my neck in bed, and even out in the living room in my reclining chair with the high back. I use one of those pillows that are filled with (I think) buckwheat. I believe you can even microwave them if you want some warmth -- very soothing.Best,>> Andy,> > Thanks for helping me to understand it a little better. I am amazed at how misinformed the educated are on our condition. > > By the way......wonderful letter! I hope Dr. Oz thinks so, too. > > C~ > > Attitude is a little thing that makes a big difference. > ~Winston Churchill> > > > > ________________________________> From: Andy Stanton andystanton@...> > Sent: Mon, February 15, 2010 2:33:22 PM> Subject: RE: OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!> > > Hi Cheryl,> > There are others here, especially> , who are much better than I am at discussing Flatback â€" I hope sheâ€™ll> chime inâ€¦> > Flatback refers to compensatory curves the> body develops because, with Harrington rods, there is no natural front-to-back> curve at the waist anymore. The Harrington rods made spine straight from side-to-side> and front-to-back. > > In my case, I was starting to lean over at> the waist and couldnâ€™t stand up straight (unless I bent my knees). Others, who> have more severe Flatback, also develop another curve, in their necks, so that> their faces are facing forward and not down at the ground. Does that make> sense?> > I donâ€™t think everyone who has been fused> for scoliosis develops Flatback, but many or most who have had Harrington rods installed> do seem to develop it.> > I hope that helps.> Best,> Andy> > > ________________________________> > From:FeistyScolioFlatbac kers@groups .com [mailto: FeistyScolioFlatbac kers@groups .com ] On Behalf Of Cheryl Abla> Sent: Monday, February 15, 2010> 1:03 PM> FeistyScolioFlatbac kers@groups .com> Subject: Re: > OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!> > > Hello Andy,> > I have a question for you and any one willing to answer. What> specifically makes someone fused from T3-L3 a "flatback"? I am> just curious because a physical therapist and a scoliosis specialist both told> me......"of course, you have a flatback or flatback syndrome you have the> harrington rod down your entire spine." Is that true? Is> anyone who is fused from scoliosis considered flatbacked? I know it looks> it, but they both almost seemed to mock my question. > > Would you please clarify for me? Is there a checklist that puts someone> in the category and someone not?> > Thanks,> Cheryl~ > > Attitude> is a little thing that makes a big difference. > ~Winston Churchill> > > > ________________________________> > From:MELODY LANE > <melodylane2195@ msn.com>> FeistyScolioFlatbac kers@groups .com> Sent: Sun, February 14, 2010> 9:35:12 PM> Subject: Re: > OFFICAL LAUNCH OF THE FEISTY MEDIA CAMPAIGN!> > > Hi Andy,> > Great letter to Dr.> Oz....thanks! ! Your situation sounds very similar to mine. My first> surgery with Harrington rods was at age 14. I was fused from T3 to> L4. I got by without too much pain until my early forties....and then> started searching for a solution to the pain I was having above and below the> fusion. I had a revision surgery in December of 2007 that removed some of> old hardware, added ped. screws and other bolts/screws and fused my back down> to S1. It took several months to recover from that surgery, but as soon> as I could I went back for another surgery to fix neck pain I had been> suffering from. In December of 2008 I had a 3 level artificial disc> replacement at levels C4-5, 5-6, and 6-7. The artificial discs move like> normal cervical discs should which reduces the wear and tear on the few> remaining discs I have left. Have you considered artificial disc> replacement as a solution to your upper back and neck pain?> > Also.....I'm curious> about your "medicinal mushrooms? Is that a prescription or do you> mean the kind that grow in the woods? > > Thanks for writing the> letter to Dr. oz. I hope you get a positive response soon.> > Melody> >> >>> >>> >>> >>> > /> >Stricken with scoliosis at the age of eleven, I've spent the rest> >of my life managing pain symptoms associated with this disease. Though many> >people have heard of scoliosis, few - including orthopedic surgeons - have no> >knowledge of Flatback Syndrome - a man-made disease caused by faulty implants> >(Harrington rods) to improve curvatures, routinely installed between 1969 and> >1990. I've had three surgical procedures for scoliosis and Flatback Syndrome> >that have both helped and harmed me. > >My mother first noticed my spine wasn't straight when she saw me in> >a bat hing suit at the beach. I was eleven years old. She took me to three> >local orthopedic specialists on Long> > Island , New York ,> >who took X-rays and confirmed that I had an L curve. Each physician told my> >mother there was nothing that could be done for scoliotic curves, and so my> >disease progressed until my spine had twisted in a spiral and my left-side ribs> >had migrated to my back. One leg was shorter, one hip bone was higher, and I> >had developed a hump. > >When I was eighteen, while my sister was waiting to be interviewed> >for nursing school, she picked up a newsletter in the waiting room of> >Columbia-Presbyteri an Hospital in Manhattan > >. When her name was called, she stuffed the newsletter in her purse. At home,> >my mom found it and read an article about how orthopedic surgeons were> >performing spinal fusions for those with progressive scoliosis.> >As you would guess, a short time afterward, in the late 1970s, I> >had my first spinal fusion. My 56-degree curve was corrected to 25 degrees, and> >I had a Harrington rod installed for stabilization while my bones fused. I was> >sent home in a twenty-five- pound plaster body cast that started at the groin> >and ended at my chin. In back, it continued upward to form a headrest. I wore> >it for nine months-with no showering. I was eighteen and forever traumatized.> >To have had my body exposed to so many medical and hospital personnel and to be> >seen in such an ugly contraption, as an adolescent, was mortifying. I> >hibernated most of those nine months, while all my friends went off and> >experienced their first year of college.> >I had minor pain now and then over the years, but for the most> >part, I was able to do all the things I needed to do. > >Then, about twenty-five years after my surgery, I started to> >develop back pain. A rheumatologist prescribed a muscle relaxer (Flexeril, or> >cyclobenzaprine) and daily walking. At first, I was so stiff that I could> >barely stretch my legs enough to walk without pain. With time, the medication> >relaxed my muscles and they stopped irritating the nerves that were signaling> >pain to my brain. I was finally able to walk-and eventually even jog.> >When I developed bursitis (inflammation of the sac between the> >tendon and the bone) in my hips, three years later, I could no longer walk for> >exercise. Cortisone injections helped in the short run, and lots of Ultram> >(tramadol, a non-narcotic painkiller) combined with Tylenol (acetaminophen)> >kept me going for a while. Ultimately, though, I developed unbearable sciatica> >in one leg and referred pain in my other ankle that felt like a fracture that> >would not heal. I sought out surgeons because I knew I would need more> >surgery-it had just been a matter of time.> >What was going on-and what goes on for nearly every scoliosis> >patient who had a spinal fusion before 1990-was that I was experiencing pinched> >nerves due to a narrowing of the spinal canal and the foramina (holes) that let> >the main nerve root branch off into the body's extremities. This was partly> >because the bones in my spine never fused properly, or perhaps the fusion broke> >early on; either way, my vertebrae continued to shift, meeting at unnatural> >angles and rubbing up against one another.> >In addition, I was developing Flatback Syndrome, a problem caused> >by my original surgery. The surgeon had reshaped my spine to be straight from> >side to side, but this plan did not take into account the spine's natural, mild> >front-to-back curves. These curves help to balance the loads carried by the> >spine. So my spine had been molded into another abnormal shape. This is what> >all scoliosis surgeons were doing at the time. They didn't know it would turn> >out to be a problem in years to come.> >My goals for the second surgery in 2003 were to relieve the pinched> >nerves and Flat Back syndrome, and to re-fuse the spine to prevent the> >vertebrae from shifting and rotating around again (like a spiral staircase).> >The surgery took 8 hours and was in two parts - cages filled with bone chips> >(for fusing the spine) were inserted from a cut in my abdomen and then I was> >rolled over and new hardware - two Luque rods with pedicle screws - were> >attached to my spine. My surgeon also rotated my spine to get rid of my hump> >and give me better sagittal balance. During surgery my lung was nicked and,> >after surgery, I had to have a crash cart next to me because I was overdosing> >on IV morphine for pain. My poor husband! I was in the hospital for three weeks> >and he was watching my progress and setbacks.> >In terms of my goals, the surgery was a success. I was thrilled to> >be rid of sciatica, Flatback and referred pain. As part of my recovery, I took> >part in warm-water therapy, to regain balance and help restore lost muscle tone> >and strength, and later added "land" therapy that included stretching> >and using the recumbent bicycle and a fitness ball.> >Yet unexpectedly I found I had a new source of pain-my upper back.> >It wasn't difficult to understand what was going on. Now that a good part of my> >spine was strongly fused (from the sacrum to just below my shoulder blades -> >Sacrum1 to Thoracic 10) and immobilized, the stress of all of my movement fell> >on the part of my back that still could move: the part above the new fusion.> >That, in turn, exacerbated the osteoarthritis (degeneration of the joints) that> >had developed where my first fusion met up with my natural spine. After years> >of bearing the brunt of much of my movement, my upper back finally was falling> >apart, too.> >My surgeon was sympathetic and referred me to physical therapy.> >After several trials of physical therapy, however, I still had chronic pain> >between my shoulder blades and in the tops of my shoulders and my neck. I also> >had tailbone pain, for the same reason, and I developed severe pain from scar> >tissue that attaches my paraspinal (beside the spine) muscle to my ribs and> >spinal bones. The scar tissue can be removed, but it will grow back. I also> >needed to have some of my metal hardware (half a steel rod and the screws that> >attached it to my spine) removed because the screws were migrating through the> >fascia (internal skin) and coming through the skin of my back (ugh).> >I began taking medication for both pain and depression. If you've> >ever had pain, you know how lonely an experience it can be. > >To look at me, you would think I am doing okay, and in many ways I> >am. I go food shopping, vacuum a little, and cook. But I can no longer hold> >down a paid job anymore (I was a psychotherapist, mostly at UMass, for 25> >years). I sometimes find myself crying if I'm seated too long (more than> >fifteen minutes), for instance, or if I run more than one errand a day, since> >that often starts what I call a "pain process," a series of worsening> >symptoms that-unless treated with bed rest, heat, and medication-mushroom s> >into a prolonged bout of pain and downtime. Since no one can see an external> >manifestation of my pain, it seems to me like my unhappy secret.> >And I find it confusing. As people age, most everyone experiences> >pain. So how can I claim to be in more pain than the next aging person? Is it> >okay to acknowledge my pain, to take it seriously-or is it better to deny it,> >minimize it, and rise above it as best I can? To own up to it seemed to me like> >malingering (wanting attention), and as a psychotherapist, I knew this was a> >shameful diagnosis. Yikes! My feelings run the gamut of self-doubt, guilt,> >self-reproach, sadness, helplessness, hopelessness, and depression. > >It took a long time to finally give myself permission to have> >chronic pain-that is, to recognize and acknowledge that it plays a big part in> >my life. > >I've found an on-line support group comprised of people in the same> >or similar situation as I'm in - in pain from failed spinal surgery, facing or> >recovering from revision surgery, depressed, angry, emotionally isolated,> >misunderstood by friends, family and coworkers, barely getting by. The group> >has been helpful in that we commiserate, exchange information about coping, and> >teach newbies who are considering revision surgery. The site is called> >FeistyScolioFlatbac kers (http://health.> >groups.. com/group/ FeistyScolioFlat backers/) .> >My life is very limited these days. I can't exercise without pain,> >I take pain medication (Flexeril and sometimes Percocet) that makes me tired,> >and I have trouble sleeping due to pain. I can't see friends as often as I'd> >like, I can't attend meetings for my hobbies (art quilting, writing), and I> >can't even volunteer - because my level of pain and fatigue is variable and> >makes me undependable. I'm collecting Disability payments and it kills me that> >I can't do more than occasional freelance journalism.> >I wrote a book, Pilates for Fragile Backs, published in 2006 by New> >Harbinger Publications, but even the modified exercises I describe are too much> >for me to pursue.> >It seems as though there is no information out there for the public> >about those of us who have had fusions for scoliosis and who must endure> >surgery(ies) , intermittent pain and chronic fatigue. Even orthopedic surgeons> >have never heard of Flatback Syndrome! Through the FeistyScolioFlatbac kers> >group, we often have to steer patients away from docs who continue to deny the> >existence of Flatback. Even the newer Luque rods (as opposed to the Harrington> >rods), that take natural lordosis (front-to-back curves) into account have> >caused problems. > >Famous people have had revision surgery - Yo Yo Ma and Isabella> >Rossalini are examples. Ferguson's daughter has scoliosis. There are so> >many others out there - but not much info about their ordeal. Please consider> >educating your viewers about the history and current treatment for scoliosis> >and consequent Flatback Syndrome.> >Thank you.> >>> >>> ________________________________> >> >From:FeistyScolioFlatbac kers@groups .com [mailto:> >FeistyScolioFlatbac kers@groups .com ] On> >Behalf Of > >Sent: Friday, February 12, 2010> >2:45 PM> >FeistyScolioFlatbac> >kers@groups .com> >Subject: OFFICAL> >LAUNCH OF THE FEISTY MEDIA CAMPAIGN!> > > >>> >>> >>> >>> >Hi, Everyone --> >> >> >>After batting this back and forth with co-moderator Maas, I am> >convinced that a flurry of individual letters -- a deluge, if possible! -- has> >a better chance of perking up interest than my lone little post regarding> >prevalence statistics, etc. And if you don't plan to write immediately, that's> >o.k. too -- why not a bunch of letters this week, next week, and the week after> >that? The more often "flatback" pops up in Dr. Oz's mail, the more> >likely he is to realize that this is a legitimate and not a medically rare or> >exotic topic -- a subject with a potentially large and concerned viewing> >audience.> >> >>In considering what to write, feel free to use your personal story as you may> >already have written it for this group. But whether you do that, or write> >something entirely new, would you kindly send a copy to the group for> >reposting? This will give us a clear and precise idea of just how many members> >are taking part in this campaign, plus it will provide a fascinating new> >chronicle of our "collective narrative" to archive at the site. > >>> >.>

February 17, 2010

Can I ask who was Melody's surgeon and location. Sent from my iPhoneOn Feb 17, 2010, at 3:16 AM, " " <elizabethrgonzalez@...> wrote: