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Thread: Severe Scoliosis curve over 100 degrees!!

  1. #16
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Kevin,

    I haven't been on the boards much this weekend but I wanted to comment on this thread when I saw it.

    First of all, I wish you all the best in finding help....truly. My son has scoliosis so I can feel for anyone suffering from it and they all have a special place in my heart.

    I agree with the others that TXmm was not trying to be rude to you. I think as someone said the written word can be a misinterpreted sometimes. (Is it possible that you took what she said differently than it was meant?)

    TXmm is a big help and support time and time again to members on this forum. I think you two just got off on the wrong foot. (She, understandably, did not realize you had prior surgery - and then things just kinda went downhill from there).

    I agree that to lose anyone as a member would be sad. We are all here to help and support each other.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  2. #17
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13
    EVERYONE
    Please list some of the medications that you have had that you would recommend using to get relief from the awful pain of Scoliosis.

    Thank You,
    Kevin
    I am already taking 5mg Methadone(x3), 5/325mg Oxycodone (x4), Diazepam 5mg (x2). I already told them I wanted to discontinue the Diazepam because it is not helping my pain, its just making me tired.

  3. #18
    Join Date
    Jan 2008
    Location
    Oklahoma City, OK
    Posts
    190
    Quote Originally Posted by Koelrich
    I am here to get help for my Scoliosis. If I wanted to chat to a overweight, depressed, physic-O then I would go to MSN.


    I AM HERE TO GET ADVICE !!!!!!!
    I TRIED TO FIX THE PROBLEM, I asked several times to get back to the subject, but I guess this is not what I am going to get form this site. I am NOT GOING TO CHECK THIS ANYMORE, SO ANY FURTHER POST ARE A WASTE OF TIME!!! THERE ARE PERSONS ON THIS SITE WHO ARE HELL BENT ON MAKING THE LIVES OF OTHERS HARDER, even when they are at the end of their rope and are here as a last resort............. check the papers do whatever the hell you want I am out
    Kevin,
    Just in case you check, please remember that in most every situation, a person will get out of it what they put into it. I can promise you will not make any friends or get any helpful information if you CHOOSE to be rude and insulting. Unless you know someone personally, you have no right to make the above comments. EVERYONE I have encounted on this board has been kind, helpful, compassionate and so very willing to share their experiences with the only possible benefit being helping others. If you are willing to be one of those kind, helpful, compassionate and willing people then great, stay and benefit. If not, move on.

  4. #19
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    I think it's past time to begin a moratorium on this particular thread. Kevin, if you check again on this one, why don't you start a new thread about the meds you wanted input on.

    Florence Littauer (sp?) wrote a book about silver packages--and I heard her speak about it once too, at a conference. But it was all about how words can be so exciting and thrilling and delightful-- like opening up a little present wrapped beautifully in silver paper, with silver ribbon and baubles-- and how it can buoy you up and help you through otherwise rough times, etc. Or words can be like the destructive sibling who comes and wrecks all you have been working on as you build a fantastic castle from your wooden blocks. Hours spent building; a mere second to destroy it all. Encouraging words; destructive words. This thread evolved into that destructive mode yesterday. We need to move back to the silver packages that have been built here--that is our strong point. The trust, acceptance, caring, sharing, understanding... the feeling that we are unified, regardless of whether we always agree with each other or not, because we are all battling this shared condition.

    Everyone--let's just move on the best we can. We can't undo the emotional damage that both Kevin and Pam are having-- and all of us too, for that matter, but we can choose to start today as a new day and put aside these differences and move on. I think we can all learn from this episode.
    66 and still heartbroken...
    2007 52į w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15į
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  5. #20
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    Kevin -
    Sorry I'm so late in posting but my drugs knockd me out last night at 8 p.m. If you are still checking, I think the advice one of the posters gave you is a good one - try to get a Treatment Team with all of your doctors. My feeling when I read your first post was that you might have a myriad of problems we don't know about that might be beyond the scope of this site, which may explain why your doctors are reluctant to operate on a 100 degree curve. They need to treat you in totality, not piecemeal. When someone who is suffering the way you are, it affects your body and mind. So lashing out the way you did is understandable, but not acceptable. I have been on this forum for 7 years and have never seen such a personal angry attack on another member, deserved or not.

    And in my opinion, TXMM did not deserve it. Yes she is outspoken, yes she is fiery, yes she's the "pull yourself up by your bootstraps" kind of person, but she is also full of compassion and a wonderful source of information on this site, since she has been through so much herself. I suspected, then checked, and sure enough she is a Scorpio, and Scorpios sting back when attacked. That doesn't mean that she can't be hurt like the rest of us. I for one will start a 'Bring Pam back' thread because she has livened up this forum like no other.
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  6. #21
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131

    My 2 cents.....

    I know we are trying to move on here, BUT.....I feel compelled to reply to this vicious and unwarranted attack on Pam. I wholeheartedly agree with the ladies who have posted before me who bring many valid points to the table. Pam has a tremendous amount of knowledge and compassion that she freely gives to others and perhaps you (Kevin) should go back and read some of her old posts to see what I am referring to. Pam has a heart of gold and didn't deserve the attack that you launched.

    All the best to you Kevin in your quest to find relief from your pain.
    Lori

    Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
    Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
    Dr. Flynn is an AMAZING surgeon!

  7. #22
    Join Date
    Jul 2006
    Location
    Iowa City, Iowa
    Posts
    13
    I tried to get back to the POINT that I needed to get information ON EVERYONE keeps LOOKING AT WHAT I SAID TO HER!!! BUT DO YOU NOT SEE THAT I first posted, she was very RUDE FIRST!!!, I CHANGED WHAT I POSTED, SHE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!


    DID NOT LEAVE IT ALONE!!! SHE KEPT GOING ONN AND ONNN SOOOO SINCE THIS SITE STILLL IS ONNNN POOR PAM (I am not a mean person, all my life I have been on the short end of the stick. I am sorry about what I said, but IF I CHANGE WHAT I SAID ( even though you can on this site) she will keep nagging on me about it, SHE STARTED IT I outright ASKED MANY TIMES TO GET BACK TO THE FIRST QUESTIONS THAT I HAD. no one would get back even though I changed what I posted, I ASKED HER TO NO LONGER POST. I tried to resolve it between us on the PM section, but she still had to spit in my face "DOES THIS MEAN YOU ARE GOING TO STOP pm'ING ME!!!!!! Still NO ONE HAS BEEN GIVING ME SPECIFIC answers, SOOO since I already fixed my original post about her.... SHE HAS AND I GUESS ALWAYS WILL BE THE GOLDEN CHILD of everyone. you all are blind at my point of view on this. I checked today hoping it would be left alone and maybe with hope someone would answer my questions about meds, docs, other hospitals, but just a 1 or 2 people did and that was before all this was going on. EVERYONE HERE IT IS


    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY
    PAM I AM SORRY

    WHAT DO YOU ALL WANT FROM ME I fixed it and you still will torch me. IF I FIX IT AGAIN SHE WILL HUNT ME DOWN AND KILL MY FAMILY!!! I am sorry but I thought I would be helped form the SCOLIOSIS WEBSITE where else can I go for this many people in one place, I DUNNO but (I am not just trying to pity myself) But, I cannot find people who are in a situation where my back is The former Pres of the Ortho association would not even operate on me, there is nothing left to do , I tired many times no one seems to care. PAM good luck on your recovery there are a lot of people who support you. I wasn't even looking for that I just needed something to share with my doc. I just got a call, I got on here to see what to tell him tomorrow, but I guess my apt @ 9:30 is just going to be another wall to throw tomatoes at and see what happens before my next appt with the clinic.
    Like I said I am not a rude person, I may have been very rude about what I posted about PAM personally but I was not wrong obviously. I am only 85 lbs I donít have a weight problem, but I can telll when such person starts to sit in font of their computer for so many hours a day and they have nothing else to do but hinder someone elseís search for a last chance (for me) to get the information I wanted because I am tired of being this way. everyone else has hope about fixing their situation I already have had surgeries and there is nothing UHIC said they could do, I attempted to look elsewhere. I am going to try to get in to the Saint Louis doc, I am going to ask for a referral. I donít know if my Iowa Title 19 will cover it because when I tried to go to the MAYO in MN for other things they eventually told me they were no longer going to accept my CARD. I am out of options NOW I am out of sprit and I am done with asking for help. I am going to let things go like the UHIC wants me to do I guess, But if I get in to the Saint Louis Doc. Then I am even willing to move out of State to get what I need. because it is too damn cold In IOWA to live with this many problems. Now I know why my grandparents always went south for the winters. Good luck to everyone (even Pam like I tried to say before.)

    Kevin Oelrich
    Last edited by Koelrich; 02-20-2008 at 10:51 PM.

  8. #23
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Kevin

    I'm not going to get into all of this, I'm here to offer a suggestion.

    Dr. Lenke trains fellows and he also travels around the country teaching pedicle screw placement, he's also made videos for manufacturers of the hardware he uses. In fact, he approached us about videotaping my daughter's surgery for teaching purposes but my husband didn't feel comfortable with it and the date didn't work out for us anyways. My point is, if Dr. Lenke is willing to take you on, maybe you can get some of the financial costs covered because of your unique case. I'm not sure the best way to approach this other than being right up front about your insurance and financial situation. Just a thought......

  9. #24
    Join Date
    Jun 2006
    Location
    Texas
    Posts
    137

    Pain control

    Hi Kevin-

    I couldn't read all the posts, and I don't know your entire history, but my suggestion is- has any doctor discussed an implantable pain pump? It's surgically implanted under the skin on your abdomen (or upper chest wall or back) and a concentrated narcotic is slowly released into your bloodstream. It is used to control chronic intractable pain. There's also the patches for severe pain- straight narcotic patches and plus you take oral narcotics for "break thru" pain.
    You just have to be careful not to overdose- and patients have told me that they get used to the narcotic, they do not get "high", but they are able to function. It usually takes a higher dose in order get the pain under control initially, then the drug delivery is maintained at a steady rate. The implantable pump has to be recharged about once a month- which a nurse dies, with a needle and palpation, to feel where the entry site is before the med is injected.
    I am so sorry you are suffering from such horrific pain, and I pray that you find relief soon. May God bless you and help you find relief- Jamie
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

  10. #25
    Join Date
    Aug 2004
    Posts
    152
    Kevin,

    Yours is an extraordinary case, but there are some others in that league. There are some things you can do. Here are Before-During-After photos of one woman who managed to get significant help when she was about your age.

    http://www.schrothmethod.com/about.html

    She was treated at the original Schroth clinic in Germany. They have the most experience dealing with a case this severe.

    www.skoliose.com

    If you can't get to Germany, there are two Schroth clinics in Wisconsin, probably the closest to you. Among other things the method is often effective at increasing vital capacity (lungs), which you've indicated is a complication in your case.

    http://sdwpt.com/

    http://www.scoliosisrehab.com/

    They may suggest a brace, though it's usually prescribed for kids in the growing age. A brace properly fitted could reduce the abnormal loads on your torso and hence relieve pain. Here's a clinic where they have scoliosis experience.

    http://www.prostheticsolutions.org/about.html

    Best of luck to you.

  11. #26
    Join Date
    Apr 2007
    Location
    Sydney - Australia
    Posts
    166
    Hi Kevin,

    I don't know if this is going to be any use to you what so ever but here in Australia we have a young girl called Emelina who's curve also reached 102 degrees and she had successful surgery. I know every case is different and I don't know your whole story either.

    But if your interested she has a very comprehensive site www.emelinasscoliosis.com if your interested in having a read through!

    All the best to you, wish I could be of some help.

    Cheers
    Del
    xx
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  12. #27
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    Thank you so much for bringing our attention to this beautiful website. What a moving and inspiring account of this young girlís heroic and courageous journey. I spent my lunch time the other day reading her site and it had me so choked up I began to cry. I love how she has dedicated her site to St. Gemma and her testimony to signs she received that this saint was watching over her. Iím quite familiar with the life of St. Gemma. I myself have had a life-long devotion to St. Therese and have also received revelations from this powerful intercessor before God who has been directing me through prayer. Both saints lived to only age 24. Iíve sent an email to this young lady to compliment her on her beautiful website and to let her know how much she has touched my life. Once again, thank you.

  13. #28
    Join Date
    Mar 2008
    Posts
    5

    Wink

    I also have 100 degree curve and I'm am on oxxygen 24/7 because it compresses my lungs i HOPE YOU CAN FIND HOPE AND HELP i'M 28 AND LIVE IN mn. AND MY DOCTORS AT THE tWIN CITY Sine Center say there is nothing they can do for me I had a full fusion done in 92. I still manage to keep volenteering and doing what I can so I do'nt get to depressed. I will keep you in my thoughts. please keep me posted.

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