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Thread: Scoliosis not newbie

  1. #1
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397

    Thumbs up Scoliosis not newbie

    Hello All,
    Please allow me to introduce myself - Rita Thompson, from Topeka, KS. I have had scoliosis since early teens. Having been scared to death with the thought of surgery at that time , but told by prominent back surgeon at KUMC that he would not do surgery if it were up to him. So, we opted not to... Have had little problems in the past, hardly any, but approx 3 years ago had a slipped disc and had a fusion L5-S1 with 7 screws. Now, in the last 2 mos having excruciating pain, to the point of not fighting going back to dr only to find out my curve has now worsened to the 80+ range, thoracolumbar region. It hurts to breathe a little, a lot if I'm stressed at all, like running or walking fast or just plain running at work here and there - anything to get me winded. Most of the pain is in the thoracolumbar region, on the left side predominantly. But, there's no comfortable position - except lying down doesn't hurt at all. It's the only relief actually.
    My dr referred me to Dr. Lenke in St. Louis, MO. But, so far their office has been unable to get a call through, so my dr put me on pain patch and I've recently started Hydrocodone just to help me get through the day. Yikes! This is just not fun. I thought I was done with the back pain thing - having just had a DeQuervain's release this past mid-February.
    Wondered if anyone had any advice or know anything about Dr. Lenke in St. Louis and can they really do something to make this 80+ degrees less? I'm sincerely hoping so!!!
    PS: I did the Brace thing for 29 months when I was 13. Wasn't fun, but I just did it. I was determined to do anything to keep from having surgery - especially at 13! Now, with the most wonderful husband and son I am blessed with - I am determined to get relief (again) even if it means going through another surgery with yet more screws!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,337
    Hi Rita...

    Glad you were able to figure out the registration thing. Welcome!

    You'll be in good hands with Dr. Lenke, and he will almost certainly reduce your curve significantly. If you click on the Search link above, and type LENKE into the search box, you'll find some posts on him.

    I would caution you to be careful about only taking the narcotics when you're really uncomfortable. This is just my own personal observation, but is seems that people who have to take a lot of narcotics prior to surgery, have a harder recovery.

    Regards,
    Linda

  3. #3
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Hello Linda,
    I felt like such a dummy with this registration thing. Thanks so much for all your help. I really do appreciate it! It really does help to hear there are other folks out there with similar problems. Although I have to admit I've only found one person so far with more than 80 degrees - I feel so special... Ha!
    I appreciate your advice on the meds. I'll take that into consideration, but right now this Lidoderm patch is doing nothing. other than just being on me in the evening for 12 hours and nothing during the day then. I've had this scoliosis for years obviously, but never had this much pain - heck, most of the time there was no pain. Boy, to be that lucky again.
    And, I appreciate the insight on Dr. Lenke. I'm hopeful he can just dangle me from my feet or something and make me straight again....

  4. #4
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Linda,
    Maybe you can tell me - this numbness, tingling and actually muscle cramping and spasming around the left side of the ribs to the front - is that normal? I get that so bad sometimes, if I happen to be walking at the time, I just nearly cannot seem to walk until it passes....
    And, I haven't taken any medicine all day long, just took the Hydrocodone tonight with this pain that is just nearly intolerable at this point. I don't know what I'll do if my dr is unable to get ahold of Dr. Lenke's office - I guess they'll call eventually.
    This is not me - I am not a SICK person.... I don't have time for this... isn't that always the case?!
    THANKS!!!!

  5. #5
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,955
    Rita,

    From what I hear, Dr. Lenke is supposed to be one of the best. I'm sure his office will get back to you; however, if you don't hear from them in a day or so, it wouldn't hurt to put in a second call. I had to do that with a NY surgeon that I wanted an appointment with. I have heard of a number of people with greater than 80 degree curves, so don't feel bad that you're alone out there.

    In my case, it was about 5 or 6 months from the time that I discovered I needed surgery to the actual surgery date. The decision is a hard one to make, but once you have you will have a certain level of peace about the whole thing. Not that you still can't be nervous, but it's nice to have a plan.

    Good luck,
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  6. #6
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Hey Debbie,
    Fellow Milwaukee Brace wearer - wasn't that fun?!
    I'm glad to hear that 80+ degrees isn't unusual. Although Im a bit taken back by the amount of pain I'm in. Hurts to breathe = heck sometimes even hurts to talk. Isn't that horrible?! And, these pain patches dont seem to do a thing..... Gees, couldn't we be young again???!!!!
    You really have made me feel better about the 80 degrees.....THANKS!

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,337
    Quote Originally Posted by RitaR View Post
    Linda,
    Maybe you can tell me - this numbness, tingling and actually muscle cramping and spasming around the left side of the ribs to the front - is that normal? I get that so bad sometimes, if I happen to be walking at the time, I just nearly cannot seem to walk until it passes....
    And, I haven't taken any medicine all day long, just took the Hydrocodone tonight with this pain that is just nearly intolerable at this point. I don't know what I'll do if my dr is unable to get ahold of Dr. Lenke's office - I guess they'll call eventually.
    This is not me - I am not a SICK person.... I don't have time for this... isn't that always the case?!
    THANKS!!!!
    Hi Rita...

    The one thing you'll discover if you hang around long enough, is that, while we're all really different, you're bound to hear of someone else with similar symptoms. With that said, your rib symptoms sound pretty unusual. I'll be anxious to hear what Dr. Lenke has to say. Hope you can get your appointment scheduled soon. Not that it would be any faster, but Dr. Bridwell is also an excellent surgeon, and I think he treats more adults than Dr. Lenke.

    Regards,
    Linda

  8. #8
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Hi, Rita ...

    My surgeon, Darrell S. Hanson, did his SRS fellowship at Washington under Lenke, and I know people locally (in Houston) who have flown for surgery with Lenke. Both my surgeon and his patients believe he's VERY competent. As Linda noted, I've heard great things about Bridwell, and I think you'd be in good hands with either surgeon.

    I had the rib spasms (sometimes front, sometimes back - across the ENTIRE back ... I only made it worse by breathing) with a 53 thoracic curve, apex at T9. They normally lasted 20-30 minutes, and when my boss walked by my offi-cle (cube with a door) and saw me crying, he knew what was going on.

    Linda, I sort of have to disagree with the generalization of drugs before surgery make for a tougher recovery. Yes, years of pain mgmt will probably make you more tolerant, but I was more tolerant than the normal 300 lb guy (at 95 lbs.) when I started my 4 year stint with my pain doc 8 or so years before surgery.

    Meds affect us all differently.

    Hang in there, Rita.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  9. #9
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    493
    Hi Rita

    I flew to St. Louis to take my daughter to Dr. Lenke. He handles very complex cases, have you seen his website? My daughter's wasn't one of those, but I decided it was worth the effort for us.

    I called the office myself and made an appointment. Our insurance is PPO so that wasn't a problem. They may ask you if you were referred, just give them the name of your current scoli physician. If you tell them your in a lot of pain, I think you'll get a quicker appointment because it can take several months. He has a 6 month backlog on surgeries but again, your case may be different.

    Good luck to you, let me know if you need any further information. Send me a PM and I'll give you my email.
    Sherie
    Mom to 2
    Sheena, 20 (56T/62L, Surgery with Dr. Lenke 11/15/07, Fused T4-L4, great correction)
    Bijan, 17

    link to photos and xrays
    http://s232.photobucket.com/albums/e...urgery%202007/

  10. #10
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Absolutely Sherie, I would send you a PM, but I'm a newbie on this site. I'll need instructions on that.... THANKS!
    I'm going to try to call the office myself tomorrow. It's after hours now and I just got home from work. I"m exhausted!

  11. #11
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    493
    I'll send you one instead with my email. When you log on to NSF, look at the upper right corner box, there's a link for Private Messages, click on that and you can go to your inbox from there.

    To send a private message, left-click on the recipients user id, you'll get an option to send a private message.
    Sherie
    Mom to 2
    Sheena, 20 (56T/62L, Surgery with Dr. Lenke 11/15/07, Fused T4-L4, great correction)
    Bijan, 17

    link to photos and xrays
    http://s232.photobucket.com/albums/e...urgery%202007/

  12. #12
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Hey Sherie,
    I saw your private message, but i just went into Outlook and sent you a message from there. So, you'll have to get in your email to read my message. Sorry. I didn't think about replying in here. See, told ya I was a newbie on here.....
    Oh and nice to meet you....
    It's already been nice talking with you...

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    2,871
    Hi Rita

    Welcome to the forum.

    We feel your pain. I'm wondering why your scoliosis wasn't addressed 3 years ago? Why was one level fused?

    One would think that if you have an 80 degree curve going on that the whole spine would be addressed?

    Have you tried massage and hot tubs? I did that for years.

    Ed
    49 yr old male, now 55, the new 45...
    Pre surgery curves C12,T70,L70
    A/P T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #14
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    I don't know why my scoliosis wasn't addressed three years ago either. No, I don't have a hot tub, but I think after this ordeal is finished I should be able to get a prescription for one from my doctor - like that would ever happen...

  15. #15
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,170
    Good luck Rita. Being in pain is very lonely. But many here have experienced pain and understand. When you're here, you can talk about anything scoliosis related and you're bound to find someone who's been there, done that, and better still, can offer some support. This site is fabulous.

    Jen
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

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