PAIN QUESTION & APATHY

[Guest guest]

I suppose I fall into the "oldies" category when it comes to the Feisty site...my dear friend, , can probably tell you exactly when I found all of you. And I haven't posted anything in a while because I feared some of you might be tired of hearing my 2 cents and my 'oft cryptic and/or too opinionated points of view. I've been navigating these Flatback Syndrome and Pain Mgmt waters far longer than I care to remember. I've shared my ups & downs, fears & anger, joys & sorrows, tears & laughs with you. I've done my best to try and steer some of you towards quality Pain Mgmt programs; applauded the successes and cried for the failures and held my tongue (fingers?) when I read some of the decisions folks have

made. I tell myself, "You've

done your best, Beth

Ann. Let it rest..." Well,

my quiet fingers are

coming out of retirement for a while so hang on to your hats, grab a glass of iced tea, and read on...sorry, but this may be a lengthy post....Before I even begin, let me apologize in advance if I offend, upset,anger, hurt, bore, etc.,etc. anyone. I've already told you that I tend to be rather opinionated...just ask my family. I confess that there are not many subjects that I don't have an opinion on. But when it comes to Scoliosis, Flatback Syndrome, and Pain Mgmt. I have come close to blowing out a carotid on more than one occasion over some of the medical mis-information and garbage that is contained in some web sites that people actually follow...as if a "www" automatically makes it true!! Yes...I may be slightly opinionated and this is quite evident if you go to the Feisty archives and read some of my past tirades. But I also know that sometimes it requires a kick in the you-know-what to get some people out their funk...to motivate

someone

to MAKE that call for a second opinion or ASK that question they fear was "too stupid to ask". Since 1975, when a team of Ortho surgeons and I at the Cleve Clinic began a clinic within Ortho Dept. for patients and their families dealing with spine deformities, I've been

preaching the same sentiment that "the only stupid questions are the ones you don't ask". Reach back into your memory to that day when you and your parents heard the words, "Your child has scoliosis and will require__________ (fill in the blank with bracing, PT, surgery"...) Remember how you felt? Remember the look of sheer terror on your parents' faces? On the way home from the doctor or clinic that day, remember the silence in the family car? And the zillions of questions bouncing around in your head? Well...I do...and I did the only thing I could think of to do so that a few less families would have one of those days. We started The Scoliosis & Spinal Deformities Clinic; my position as patient co-coordinator was as a liaison between the patients & their families and the medical staff & physicians...in other words, I talked...a lot!!! I TALKED to the patients and their families, answering all those "stupid questions". From the

day of diagnosis through whatever treatment and/or surgery was required. I held hands, I wiped away tears,I was with them in the O.R., I rejoiced with them when they were released from care. I doubt there is a question I haven't heard...and to me, not a 1 of them was ever

stupid! And I still get Christmas cards from many of these folks...the patients who are now parents and grandparents...the parents who have watched their children grow and lead long and wonderful lives.So anyone who thinks I'm apathetic about ANY of this should just head on to the their next e-mail. If our founder (and my friend) or any of the other co-moderators and members were truly apathetic this site would have gone down years ago. And there are still others out there is cyber land looking for help, support,understanding, and yes, answers. I know that in my years of reading posts on this site I have often found not only answers but comfort from friends I may never meet face-to-face. But I know you're out there and that alone gives me a sense of peace.I feel like one of the lucky ones here in that, I have only had to have revision procedures performed twice. I had my original fusion in 1970 at the Cleve Clinic (yep! the

same place I went back to work!). Those were the days of Riser body casts, torturous traction devices, and months confined to bed. The surgery was a success and I literally forgot I had this rod in my spine... most of the time! I got a few reminders of the rod and fusion in my late teen and 20's when I would do things that would make my docs cringe...like snow skiing at places like Aspen,Vail, Sugarbush; water skiing on Lake Erie and racing on sail boats on Lakes Erie, Michigan, Superior, and others. On (ONLY!!) 2 of those occasions I landed back in an O.R. to have some "touch-up" work done to repair fractures to bone over-growths on my original fusion (which was a T10-L4 fusion). I'd have a few days of post-op pain but would forget all about pain when I was throwing up a main sail on the boat or stepping into a pair of ski boots!!My next act of defiance to

medical advice was in 1985 when I delivered my son. Carrying my son for 9 mos and trying for a vaginal delivery (that spiraled down into an emergency c-section) put a lot of stress on my only remaining disc (L5). The low back pain persisted from '85 on but nothing that altered my life much. It wasn't until 1995 that I began to allow thoughts of "something's not right here" to seep into my thoughts. The pain in my legs, especially my left leg, just wouldn't go away and I'd have days when my leg felt like it was "asleep" all the time...like when you sit on the toilet for too long! Then I began to notice that I was having more and more difficulty standing up straight; and I felt like I was walking like a penguin. I know there are many of you out there who have experienced the same sensations...and fears! That's when I first went to see a local Ortho doc to try and get some ANSWERS. The "testing nightmare" had begun...multiple x-rays (enough to

sterilize the most prolific of bunnies!!), CT's, myelograms, consults with Neurosurgeons. All that and STILL the pain persisted and increased; my left leg got number, both legs were getting weaker; and my ability to even force myself to stand up straighter became non-existent. And the most infuriating, frightening part of all of this was that NO ONE knew what was wrong or why it was happening or what to do to fix it!! My greatest fear was realized...NO ONE COULD ANSWER MY "STUPID QUESTIONS"!! Are you beginning to catch a central theme here? I HATE not knowing WHY? or WHAT? when it comes to my health or the health of my family & friends!!!That's when it was decided to try the intradural steroid injections as a method of pain mgmt. What a nightmare those injections were! They already knew that I had the herniated disc at L5 and severe stenosis at L3,4,5. Yet once a month, for 9 mos running, I would lay on that table in the Pain Mgmt O.R.,

under that fluoroscope while a Neuroradiologist injected steroids into my spine through a needle inserted at the L5-S1 disc space. When the meds would reach the area of stenosis they would quite literally FORCE THE MEDS through...at which point I would screech because my legs would feel as if they going to blow off! The pain and pressure were indescribable. I would get some minor relief for a while but then the pain would resurface with a vengeance. And each series of injections had less and less effect...typical of steroid therapy. And still...NO ANSWERS AS TO WHAT WAS WRONG!!Then we moved to the Baltimore/D.C. area and it was there that I found my "medical saviors" as I like to refer to them. I was told about an Ortho doc who was an adult scoliosis specialist and made an appointment. He diagnosed me as I walked into his office...I'm not joking! Without looking at a single x-ray (or even my back for that matter) he said, "So Mrs. Bunce, how

long have you been dealing with Flatback Syndrome?" to which I replied, "the WHAT??!!" And so it began...in 1998 I had an anterior laproscopy disc removal and fusion of L4 thru S1 with pedicle screws inserted anteriorly at L3,4,5. Then in 2000 I had the posterior removal of the Harrington rod, osteotomies at the L3,4,5 areas, correction of the Flatback Deformity with 2 contoured rods, stabelization with pedicle screws at L2,3,4,5 and fusion from T9 to pelvis. After a few months of bed rest in a brace I was able to stand up straight for the first time since 1996.Because there was such a delay in diagnosis and treatment, the nerve damage in my left leg remained which is where my Pain Mgmt nightmare begins. Believe me when I tell you...there are a lot of ignorant people in the world and none more so than E.R. personnel who assume that every person who walks into an E.R. and says they're in pain is automatically a "drug seeker" and stick your

admission chart at the bottom of the pile. Then there are the "well meaning" family and friends who think that if you are taking a pill that happens to be a narcotic (Opoids) you must be "becoming a drug addict!" and start sending you articles titled "OcyContin is the New Heroin" and "Teen DIES of OxyContin Overdose!". And let's not leave out another of my favs...the Pain Mgmt.quacks...those pill pushing ya-hoos who will write you a script for all kinds of "happy pills' without bothering to take ANY sort of medical history or even attempt to find the SOURCE of the pain! And last but certainly not least...the jack-hole Internet...which harbors more doctor-wanna-be's than a Med School in Granada. Google the term 'pain management' and you can find more "experts" than you can possibly surf in a month! What frightens me about these people is that people who are suffer from legitimate chronic pain who are desperate! Desperate for ANSWERS...desperate for

help...desperate for relief. And they will grasp at any rope that's thrown out to them, not knowing that the rope is fraying. I saw my share of the Pain Mgmt quacks. One of the so-called Pain Mgmt Specialists I went to was a real treat. Had I not been so desperate for help I would have run home the moment I laid eyes on him. The waiting room should have been my first clue...people standing in a line at the receptionist's desk being handed little cups of something to drink. Then they'd sign a book and leave. Odd, I thought, but then, I had never been in a Methadone Clinic before so how was I supposed to know??!! My next clue to bolt should have been the doc himself...a Jimmy Buffet look-alike right down to the Hawaiian print shirt and flip flops!! He asked me a few questions...like my age, weight and height...and sent me out the door with rxs for 6...count 'em...6!!!! different meds!! After a week of taking this cocktail of drugs I was not

only bouncing off the walls of our home but I would get in the car and start driving...with no destination in mind and getting lost. I was cooking like I had to feed a family of 10...except that at the time only my son and I were at home (my husband was working out-of-town). The night my husband came home and found me asleep on the bathroom floor was the end of all that...thank goodness I never injured any one or myself in those few weeks.Luckily I was scheduled for a yearly exam with my Primary Care doc shortly after that. A few minutes into the exam I just fell apart...sobbing, shaking, etc. I told him everything...about the pain that was robbing me of my life, my health and my family. I told him about the wackos I'd been to see who had either ignored me completely or had me so doped up that I couldn't function. After I had pulled myself together he told me that he could help me...that he was not only a Primary Care physician but also a board

certified Pain Mgmt specialist! He didn't "advertise" as such because he didn't want to attract all the crazies and take time away from patients who were really suffering with legitimate chronic pain. Then he asked me one very important question...one that none of the other docs had ever bothered to ask me. He asked, "Are you willing to sign a Pain Contract and abide by all the rules and restrictions of the contract?" I thought about for about half a heart beat, read through the contract and signed on the dotted line. For the first time in a very long time, I actually had HOPE!! HOPE for relief! HOPE for a future! HOPE!!! What an amazing feeling HOPE can be, friends. I signed that first Pain Contract in 2001 and have happily, willingly, signed one every year since. It protects me as well as my doctor and his practice. I had a med regime that includes OxyContin C(ontrolled) R(elease), Neurontin, SOMA, Flexaril and Benecar HCT. I have check-ups

every 3-4 mos and am re-evaluated for compliance yearly, when I sign my contract. Currently I live 495 miles away from my doctor; we have to move back to our hometown almost 5 yrs ago to care for my husband's Grandma. I have still not missed a single appointment with my Pain doc! I either fly or we drive down to land every 3-4 months...honoring my end of the Pain Contract is perhaps one of the most important things I do...for myself...for my husband...for my sons and daughter-in-law...for my Grandson and for my Granddaughter, Emma Jolene, whose due to make her grand entrance around July 26!! And Grandma is going to be there, in North Carolina for the big event and to take care of her big brother, our Caden Luke.The was a time in my life when I could not have imagined myself doing all the amazing things I do, like travel by van from Pa. to N.C., or take care of a (almost) 4 y/o Grandson, or fly to Denver to spend time with my son, the

one I gave birth to in 1985 (my other planned trip this summer!). Every time I leave my Pain dpc's office, I give him a hug and thank him for giving me my life back...for having the skill and knowledge that afford me the QUALITY OF LIFE I have. Like most chronic pain sufferers, I never asked for nor did I expect to be pain free...I just wanted to have the ability to live with tolerable pain. And I do!Which is why I am a advocate for pain patients through my volunteer work with The American Pain Foundation. Based out of Baltimore, Md. the APF is a non-profit group that advocates for quality, affordable pain mgmt care for any and all of the millions who suffer with chronic. Their web site is an invaluable source of info, from places to go to for care, to new methods of treatment being used; they closely monitor D.C. for legislation on pain mgmt and when a piece of legislation is coming to the floor for a vote, they rally the APF members and

volunteers to write, e-mail, call, sign petitions.etc., their local legislators to vote yes/no on bills. Their tireless efforts on behalf of pain patients is admirable. When an important, soon to be mandatory, on-line course (for medical personnel regarding the proper care and treatments for chronic pain pts.) was being launched, I was asked to go to D.C.at the National Press Club to speak (on behalf of the APF and chronic pain sufferers) to a large group of Pain Mgm. specialists, several current and former Sectys. of Health and Human Services, members of the media,etc. on what it feels like to live with chronic pain and how difficult it is to find QUALITY PAIN MGMT. care. I didn't even have to think about it before I said "YES, I'd be honored!" It was an amazing, if not somewhat surreal, experience to stand before a crowd of such distinguished, people in The National Press Club and be introduced as "She is the face of chronic pain;

and she is a representative for the millions of un- and under-diagnosed people who survive each day with chronic, debilitating pain." Talk about feeling like you have the fate of millions of people in pain resting on every word that comes out of your mouth!! But once my jitters subsided, I just spoke from the heart about my life, pre and post) recieving quality Pain Mgmt care. After the launch program ended, I was approached by so many people asking me questions e.g. "Is it really that difficult to find a qualified Pain Mgmt. physician?"; "What meds are included in your daily med regime?"; "As legislators/Pain Mgmt specialists/doctors/nurses, etc., what can WE do to get the word out about this crisis?"My 2 days in D.C. for the APF were a memorable experience; and they reinfored my determination to do every/any-thing to counsel pain patients and to help educate people about chronic pain. It's a nightmare that ranks right up there with the

Flatback Syndrome! It's life altering...it will rob you of the quality of life we all have worked and suffered through to attain. We Feistys have guided, supported, empathized with each other and a multitude of others via the Feisty wen site. For the sake of any and all Flatbackers who suffer in silence with the deformity and pain we must continue to support the site. Sure, there are "rules" about the site for posters but they are not ALL 's rules. dictates much of the acceptable contribution conditions. sets rules on the site so it can continue to be a place for people and their families to come to and read, learn, often vent. I am so thankful and feel so blessed to have this forum to come and for the "friends" I've met over lo' these many years!And with that, I bid you good-by, Feisty friends. Hope I didn't bore anyone too awful much!All the

best,Beth.