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Thread: Now pain in left hip

  1. #16
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68
    Maryhou, I talked to my mama (81) last night and she said someone ought to slap your doctor in the face. My mother by the way, is a RN, or a retired RN.

    Meanwhile, what is all this talk about "BAD" back. Bad back. Bad back. How bad my back is.

    It is what it is. Don't give it more character than it needs or feel like a bad person.

    My mama's right.

    I am thrilled you have a friend to go with you. btw, by 43 I realize people are more grown up and giving than they were in our teens.

    There will of course still be pills in the world but hey. aw, I don't think of my back as a "bad" back. What are you trying to do, separate yourself from us?

    If your back is "bad" does that make mine evil and someone else's good? I see a woman's back in a movie and I appreciate how beautiful it is but I don't think in terms of good or bad. I think of straight and what might of been and how pretty a woman's back can be. I don't feel that mine is ugly however.

    None of your read, "Looking for Mr. Goodbar"? Diane Keaton, who plays the character, has a moon shaped scar, in the book aw. The movie is not a pick-me but has little to do with scoli, and more to do with freedom in the 60s.

    Maryhou, so glad your new doc moved up your appt. That's humane. When I finally got my appointment, when I had the MRI in hand, I thought it will be good to know what's what.

    I do feel conspicuous for having a "severe" degenerated disc in my spine but that's because despite the literature or a doctor's a assurance to the contrary, I remain a tad "paranoid." That has to do with other people and their own need to reassure themselves, in my family, that it won't happen to them, or hasn't happened to them because it was of course, my scoliosis, bla bla. I choose to believe in my highly educated, experienced, knowledgeable practitioner who has presumably "seen it all" and still seeing it.

    I love the way my doctor was showing me the MRI and the smooth "pretty" cartilage between my vertebrae, oh except for there. It was a clinician's point of view, no "bad" or "good" just not there. I don't know how he had humor about it but he did and it made me feel solid.

    Maryhou, you need some action and control. Google etc. office location, and pick out some sights or a place to go to lunch. I find "balance" of thought a good thing. I didn't get a lollipo after the MRI so my husband took me to lunch. Heck, just saying the name Amarilla Amarillo can be fun. Can you joke about it with your friend?

    aw, hopefully my posts will give you some squareness between now and your appointment. Your new doc is NOT going to talk about your "bad" back, okay girl? Come back on the playground until someone tells you it's time to go. You've set your appointment, you have a friend to hold your hand but also someone who might like to eat something. Remember how in our youth we had some humor? How else to cope. I could use more humor.

    Mama gets the first slap, for your doc being unprofessional and uncaring. I get the second for him making you feel ugly and disposable. Rather than expose his own inexpertise he blamed you. Linda? You in for any thwacks of your own? Who else? I will not be complacent at 43. I will cry when I want to. I will be brave when it is appropriate.
    Traction at 13, body cast 1 mos., Milwaukee, first plastic (severe allergy, abdomen skin burst, watery) then leather. Harrington Rod @ 15, 9 mos body cast, hips up. 9 more mos being careful and protective. Degenerated disc C4-5 I think well above the rod. Degenerated disc below the rod now? Probably.

  2. #17
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61
    CK43... Thanks for your post. Tell your mama "thanks" for the first slap to the doctor that I visited recently and thanks to you for the second slap. I'm excited to be going to a top doctor later this month. I am so happy and thanks goes to Linda and others on this website.
    Last edited by MariHOU; 11-08-2006 at 12:44 PM.

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  3. #18
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68
    Mama said it was good. He looked surprised by the second one. Didn't expect it from a scoli girl or the patient. We then left the buildiing.

    I know exactly how you feel about being in good hands. Did you look up your doc's background? Call me funny but I liked knowing about his background, e.g. my guy was from the Midwest, Ohio etc. Maybe I was thinking about chit chat or something.

    I'll tell you what, Maryhou, there is nothing like standing in the presence of greatness. A surgeon. In a strange sort of way it was like going home.

    I knew I didn't need to fear being ridiculed because this guy chose to work in scoli. He would know something about me before I even came in. I wouldn't have to explain anything or fear being treated as an "other." My pains and feelings are real.

    I also got my other perks, like admiring a person. Those hands, that steadiness, that knowledge and precision. I admired the whole office, and team work and so on. They set a standard for care. I admire humans who do good work. I am thrilled your doc's office showed compassion and worked you in.

    To tell you the truth, once isolated (I walked in with x-Rays) to the C-Spine (neck) they hadn't the slightest interest in my scoli. None except maybe to understand why I was asking some "paranoid" questions. They really took there time.

    They are passionate people about one thing and one thing only. The spine, the vertebrae, their field of interest. Yes they were nice but they were fascinated by the work at hand. There wasn't anything unusual about my neck, like a "fascinating" case or anything, just that's all they were interested in, beyond reassuring me, educating me, and next course of action.

    It's funny, I was talking to a woman some years ago who had done alot of work with scoli people and she forgot for a moment, I was one of them as she said, "Well you know how scoli people can be." Yeah, low self-esteem, inordinate self-consciousness (which I have sometimes been able to shed for years), etc. and GRIT.

    Anyhoo, Maryhoo, he will "like" you etc. but it's your spine he is interested in. Dr. Thwack had no interest or knowledge. If he knew anything about scoli he would never have put you through what he did. The internist office I first went to was really not any better. I am 43 which is aging range but I am a young vibrant woman.

    I guess you could say I didn't feel ugly or "bad" or silly at the ortho's office. You are in good hands now. Next time come to Phoenix, we'll go to lunch and do all kinds of fun things, and you can meet, Doc-tah Slaught-tah. He is black. I think he might know a "little bit" about what it's like to be us.
    Traction at 13, body cast 1 mos., Milwaukee, first plastic (severe allergy, abdomen skin burst, watery) then leather. Harrington Rod @ 15, 9 mos body cast, hips up. 9 more mos being careful and protective. Degenerated disc C4-5 I think well above the rod. Degenerated disc below the rod now? Probably.

  4. #19
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61

    Smile

    THANKS CK43!!!!!!!!!!!!!!!!!!!!! Sure will!

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  5. #20
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68
    Hey, I think I just bought you a virtual cold brewskey, see my post that took me a few hours to write today under Hermiated Disc. Read it and pick up your beer.
    Traction at 13, body cast 1 mos., Milwaukee, first plastic (severe allergy, abdomen skin burst, watery) then leather. Harrington Rod @ 15, 9 mos body cast, hips up. 9 more mos being careful and protective. Degenerated disc C4-5 I think well above the rod. Degenerated disc below the rod now? Probably.

  6. #21
    jennifer b. Guest

    a little history

    I am 45 years old and was diagnosed with scoliosis at age 11, wore a Milwaukee brace for four and a half years. I had my first spinal fusion at 19 with a Harrington rod and a body cast for 9 months. I developed severe degenerative disk disease at the base of the fusion in the following years and four years ago had a laminectomy, and more fusion, (two posterior and one anterior).

    The fusion now runs pretty much from my bra line down through my sacrum, branching out and bolted into both sides of my pelvis. My wonderful surgeon Robert Banco at New England Baptist in Boston informed me that I would have lost my ability to walk within a year without intervention, so, I'm not complaining. I feel blessed to have had such wonderful people involved in my case. I'm waiting for my MRI report so I can arrange therapy for my hip. I have an x-ray, but not in form of a file to send on line.

    I am so grateful to have found this forum full of folks who understand the struggle. Thanks for listening to my ramblings.

  7. #22
    Join Date
    Oct 2006
    Location
    Phoenix, Arizona
    Posts
    68
    You ramble? Girl? I am the rambler here. fyi, if you look up top to "User CP", click on it, and "Edit Signature."

    You can spare yourself some energy. Ramble on girlfriend.

    See my "sig" below? It's automatic.
    Traction at 13, body cast 1 mos., Milwaukee, first plastic (severe allergy, abdomen skin burst, watery) then leather. Harrington Rod @ 15, 9 mos body cast, hips up. 9 more mos being careful and protective. Degenerated disc C4-5 I think well above the rod. Degenerated disc below the rod now? Probably.

  8. #23
    Join Date
    Oct 2004
    Location
    CENTRAL FLORIDA
    Posts
    21
    JENNIFER B, i JUST HAD 36 PCS OF SS METAL REMOVED IN SEPT 06. I TOO AM FUSED FROM T-2 TO THE SACRUM. HOWEVER THOSE RODS AND SCREWS ONLY EXTENDED FORM ABOUT T-12 SOUTH.
    I AM NOW 53 AND AFTER 8 SURGERIES I AM WONDERING WHY I HAVE NEVER HEARD OF TORN TENDONS IN MY HIPS. WHEN I WENT IN FOR MY 6 WEEK CHECKUP MY DOCTOR DID MENTION THAT MY HIPS WERE LOOKING LIKE THEY WERE GOING TO NEED ATTENTION IN A FEW YEARS. ?????? NO OTHER EXPLANATION. JUST LEFT ME WITH THE HEART WARMING NEWS THAT WHAT? I MAY NEED HIP REPLACEMENTS? SO WHAT DO YOU DO BESIDES PT FOR THOSE TENDONS?
    I WAS UNABLE TO WALK MORE THAN 200 FT FOR THE PAST 10 YEARS. SINCE THE REMOVAL OF "36 PCS OF HATE" I GO BETWEEN 1/2 TO 2 MILES A DAY. I'VE BEEN WONDERING WHY SOME DAYS ARE SO MUCH BETTER THAN OTHERS.
    Jeralyn is Queen!

  9. #24
    jennifer b. Guest

    horrid hips

    Jeralyn
    I was wondering why your rods were removed, my first harrington was removed when all the others were added.
    I was told by my surgeon that where I had no spinal flexibilty left, (I can't sit on the floor because I can no longer sit up with my legs in front of me) that I needed to be extra careful with the bits that did still move, ie the hips. I should be using my grabber more to pick things up off the floor rather than relying on my hips, but, I don't always.
    P.T. is being tried, but surgery is still an option. I'm told, people in our possition could always be looking at more surgery.
    I find weather has an effect on how I feel and some days I feel as though I'm
    hanging off all that metal. I'm always in some degree of pain, how about you?
    I begin P.T. this thursday.
    Last edited by jennifer b.; 11-13-2006 at 09:42 PM. Reason: spelling problem

  10. #25
    Join Date
    Oct 2004
    Location
    CENTRAL FLORIDA
    Posts
    21

    it gets better

    hi jennifer b. My first surgery was in 1969 without rods the doc bony fused T2-T11 in a single operation. For Portland, Me, that alone was an accomplishment, never mind insertion of rods. The recuperation was a plaster body cast from earlobes to tops of thighs and flat in bed for 6 months. Then the cast was reduced to free the shoulders and bottom was trimmed to create a walking cast for 3 more months. That fusion has never broken, other than a hot spot of nerve pain between my shoulder blades, I don't have complaints about that fusion. By the by, to treat that pain -which brings all things to a ceasefire, usually when I'm cooking a big dinner or have been working at the counter too long, I have found "express gel", a topical treatment which works within mins. I get it from a compounding pharmacy.
    From '73 to '76 I couldn't do housework, go to classes at college, get up off the couch,etc because a broken bone in the lumbar area would get locked over the vertebrate beneath it. A reverse curve had occurred below the thoracic curve, which as I remember was approx 48 degrees, corrected to around 20. Dr Wright of Boston fused the lumbar area, but had to leave it equivalent to the upper curve to keep me balanced. He put a Harrington Rod in which was inserted at about T-9 and ran diagonally to my right hip. He put a slight bend in the rod to keep it stabilized - (I guess it made architectural sense at the time). Within months though, I heard the rod snapping whenever I bent over. There wasn't a significant amount of pain associated with the "click" and we were surprised to find xrays revealed the rod had screwed its way almost 3 inches through my iliac crest. It may have been overlooked from the angle of the xray except that the kink in the rod was upside down - that prompted the doc to take measurements. Anyway, after some "to-do" I eventually agreed to have the rod removed. The "to-do" was due to an anesthesia complication I had suffered during the prior fusion. So in 1977 the rod between T9 and my right iliac crest was removed and some areas of compromised fusion were repaired. I proceeded to give birth to 3 more sons- for a total of 4. We lived in the Northeast and my doctor advised me to do whatever I felt capable of doing. I cut and split firewood, filled the woodbox, etc, not to mention carrying around those toddlers. So in the early '80s, I developed right leg pain. The doctor told me I was such a stubborn lady he would have to keep me tied to a board for 9 months without so much as allowing me to use a bedpan in order to get my spine to hold a fusion. I had a 6-8 cm spondylothesis at L5. I took him literally and would not consider giving up my motherhood responsibilities for 9 weeks, let alone 9 months. So over the next few years I treated chronic severe pain with codiene, percocet, etc. I developed foot drop, had to swing my right leg out to the side and ahead of me to walk. Eventually I was "functional" until only 1 or 2 in the afternoon, followed by painkiller blackouts-sometimes lasting weeks. It got bad enough for me to sit down and negotiate with the surgeon; I agreed to have him clean out around the L5 nerve and reduce the irritation to my right leg. He warned me that this would be a temporary fix, as the matter impinging on the nerve would grow back every 2 or 3 years. We scheduled the surgery in '87. I was supposed to be back on my feet that afternoon and only have to wear a small binder for about 6 weeks. Instead, when Dr Wright opened up the spine he found my bullheaded ability to ignore the pain for the past few years had reduced the bone stability to that of crumbled eggshell. He got my husband's permission to do a complete reconstruction. I awoke atop 6" of packing and drains. I knew things had not gone as planned, what I didn't know was that I would have to return to the OR a week later and have anterior fusion from L2 to Sacrum also. Needless to say, I vowed to leave the woodpile labor to others, in fact I committed to a move toward flatter landscaping, warmer weather and a climate that would allow me to continue my dedicated health upkeep year-round. Thus we came to Florida. Everything was fine until I was rear-ended in a hit and run in 1992. When the radiologist looked at my films he didn't know which way was up. He gave me the films and told me to consult an ortho. I went to over a dozen, getting comments from: "How in heck do you stand up straight, and maintain a smile on your face when you're such a wreck?" to "Dry your tears, Sweetie, it's never going to get any better and there's nothing anyone can fix here". In fact one doctor told me I had some very serious problems, but unfortunately he didn't possess the know-how to fix it, and 3 months later, when my auto insurance sent me to him to conduct an exam for them to determine whether all my specialist visits were necessary, he changed his tune to: "this young lady displays no spinal abnormalities and requires no further care."
    Anyway, talk about rambling, eh? It took me 4 years to find 3 doctors with differing opinions as to how to correct my broken fusions -4 of them, in fact. Furthermore, there was no evidence of any prior anterior fusion done in '87. So in 1996, I had rods inserted on either side of L2 to the sacrum and another anterior fusion done simultaneously.
    OK, The problem might have been that the 5 nurses who got me out of bed for the first time following this 12 hour surgery, disappeared, leaving me with Queenie, a 92 pound midget to return me to my bed. Against my protests, she insisted on returning me to bed by herself. Just as my knees were about to lock, she sneezed and being a germophobe of highest regard - she covered her face with both hands, allowing me to topple to the floor. Casting me to the wind if you will. I tell you this because I am not sure whether she caused the pain that ensued from that day forward or it was a screw disturbing my nerve, but the sciatic pain in my right side was prevalent every day for the next decade. THen the left side joined in. I sought help from doctors in a new part of Florida because the surgeon I had used in 96 refused to acknowledge that he may have made a booboo. Again I saw about a dozen pros. They all said there had been so much reconstruction that there was no way to read the films. MRIs were impossible because the rods were stainless. And radiologists could not or would not be responsible for a misdiagnosis, so no one would commit to much more than a pat on the head and an apology for being incapable of dealing with my problem. Eventually I met a pain management guy who started cortisone injections. The shots were fruitless. A series of caudals proved to have reverse effects. We tried PT, several new painkillers. I was given morphine extended release. then it was doubled. then immediate release morphine was added. Ultimately I was popping morphine 8 times a day. Was the pain bad? I think you know. Unfortunately, I think more of us know than the medical profession- at least as I know it, dare to admit. Whether our chronic suffering stems from structural mistakes made in effort to stabilize us, or our poor bodies are simply destined to continuous degeneration, I fear some of our fusions and corrections are doomed for further and continuous care. This past Sept I found a doctor at a teaching hospital who was willing to do exploratory surgery to determine whether my pain was concrete or indeed I needed to continue investing in Kleenex stock. He found the rod had become unattached and causing untold torque on the spine, resulting in pseudo fusions.
    In conclusion. He removed those "36 pcs" , refused, and I am no longer a morphine junkie. I just walked 2 miles and am painfree. Last week I did somehow manage to take a "header" at the mall. I fell face first, after catching the sole of my shoe on an obstacle. My back is fine, though I am wondering whether my knee will ever return to flesh color. Because of my instability from 1996 on though, I have experienced a broken left ankle, left arm, right humerus and torn shoulder ligaments. Not to mention the spiral and hairline fractures I didn't have filmed because, like you, I have a pretty high pain tolerance and somewhat low faith in white coats.
    To anyone who has followed this dirge to the end, I say, Have faith in fellow man. Had I the brains to be more persistent in finding good health care I would have spared myself many many years of sufferance. I may have ended up having more than 8 spinal fusions over the past 37 years but at least I wouldn't have spilled as many tears and suffered so much depression. Both of which I admit contributed to nothing besides feeding my own dejection. Have courage, All of YOU. There is help out there.
    Although I have an "S" curve from T2-Sacrum, my lumbar spine is presently 3 to 4 times as wide as it once was and should provide a good base. Now if I can just learn to walk without using my face......
    Jeralyn is Queen!

  11. #26
    jennifer b. Guest

    wow

    Jeralyn
    You are one tough cookie !!!!!! question, if I may, I had an anterior fusion among my collection of procedures and it has left me with some pretty bizare scar tissue, did you have this and if so did you do anything about it? can anything be done about it?

  12. #27
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by jennifer b.
    Jeralyn
    You are one tough cookie !!!!!! question, if I may, I had an anterior fusion among my collection of procedures and it has left me with some pretty bizare scar tissue, did you have this and if so did you do anything about it? can anything be done about it?
    Jennifer...

    Are you talking about the actual scar, or do you have an uneven swelling on one side of the abdomen?

    --Linda

  13. #28
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    543
    MariHOU,

    I will also be seeing Dr. Lagrone shortly. I will be seeing him on Dec.12th. Have you received the package of information yet? How much paperwork is it to fill out? I will fly out in the morning and come back later that evening. Let me know about the paperwork.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

  14. #29
    Join Date
    Oct 2006
    Location
    Texas
    Posts
    61
    Hi Theresa.

    I'm scheduled to go on November 28 and they are sending me the paperwork today. I think that they wait until the appointment time gets close to send them. On his website I see a link to download the patients forms but it does not work. When I asked his office they explained that they prefer to mail us the forms because they are color-coded. Hmmmm, not sure what is color-coded. I'll come back and tell you more when I get the forms. I'm curious also.

    Marilyn

    1975 Clear hard plastic body cast worn
    1976 Operated for high grade Spondylolisthesis; lumbar fused from L2-Sacrum and Harrington rods inserted
    1976 Wore regular type body cast and in bed rest for 1 year
    1977 Rods removed
    2006 Diagnosed with Flat back syndrome with sagittal imbalance
    2008 Scheduled for wide pedicle subtraction osteotomy, sooner if pain increases


    My email is ahlan_warda@yahoo.com

  15. #30
    jennifer b. Guest

    scars etc.

    Lindaracine
    I have uneven swelling on one side of my abdoman, it follows the curve of the scar.
    I know that I'll never have a flat stomach again, but, this really bothers me.

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