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  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
    6,793
    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
    1,956
    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
    6,793
    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 2009
    Location
    Topeka, KS
    Posts
    397

    Talking

    Well, I have to say, I took someone's advice on here, mostly because I am a newbie of sorts to this forum and already seeking advice I guess. I tried calling Dr. Lenke's office this morning around 9:00 and by 10:30 she called me back and made an appointment for me. I see him on Aug 19th, which sounds long ways off, but when you think about it, could have been lots further out, like November or December. More worrisome, however, is that he is currently scheduling surgery for February. OMG! But, she said they always move people up if they're bad enough and experiencing a lot of problems, so we'll just wait and go from there. She was very nice and sympathetic to my symptoms, travel distance, etc. So, if you can go by first impressions, I'm off and running already.
    So, my hats off to whomever suggested I call the dr myself - I hadn't thought of doing that yet, but it certainly worked.
    I'll be on here periodically, mostly looking for a sympathetic ear probably while I wait for my appt.
    THANKS!

  10. #10
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Quote Originally Posted by RitaR View Post
    Well, I have to say, I took someone's advice on here, mostly because I am a newbie of sorts to this forum and already seeking advice I guess. I tried calling Dr. Lenke's office this morning around 9:00 and by 10:30 she called me back and made an appointment for me. I see him on Aug 19th, which sounds long ways off, but when you think about it, could have been lots further out, like November or December. More worrisome, however, is that he is currently scheduling surgery for February. OMG! But, she said they always move people up if they're bad enough and experiencing a lot of problems, so we'll just wait and go from there. She was very nice and sympathetic to my symptoms, travel distance, etc. So, if you can go by first impressions, I'm off and running already.
    So, my hats off to whomever suggested I call the dr myself - I hadn't thought of doing that yet, but it certainly worked.
    I'll be on here periodically, mostly looking for a sympathetic ear probably while I wait for my appt.
    THANKS!
    Rita,

    I'm so glad!! Persistence can sometimes pay! I was in the hospital for 6 days. When I was there, my husband stayed in the hospital guest house right across the street, which (in NYC) was a bargain at $100 per night. He wanted to stay close and not have to go home to NJ every night which distance-wise isn't far, but can take a long time to get back and forth.

    I hated drugs too, but for me there was no question. I just needed some relief. It's not like the drugs I was on took all the pain away either; they just made it tolerable. Of course, over the weeks after surgery, the pain gradually decreased. Even though it's hard to believe that in the beginning, it's true.
    __________________________________________
    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

  11. #11
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397

    Thumbs down

    I cannot even fathom if after surgery this pain is even some better.
    I cannot walk for more gthan 10 minues without being in sheer agony. And, I know walking is a must to keep limbered up - but if it causes this much pain. What to do? It effects everything you do - everything you think. I long for those days when I had no pain and just forgot about even having his dreadful curve thing. Waiting until Aug 19th for my appt is going to be a very long time I'm afraid. I am sooooo glad I have this site to vent. Ugh! Anyone have any ideas of what they've done to make walking a litlte more tolerable? I can't even p repare dinner without being in sheer agony that by the tikme Im ready to eat - nothing sounds good if you're dying in pain.
    Sorry, is this whining?

  12. #12
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I hesitate to stick my neck out here, but reading of your pain, I am going to suggest you try a magnetic wrap, in the meantime. I used to use one before my surgery and it worked. And I never expected it would. A friend talked me into trying it. I know many (including myself, once) would be sceptical, but it worked for me, perhaps it will for you too.

    Considering the degree of your pain, you might be willing to try anything. The best ones are the non-rigid ones. They are like a wide piece of elastic with magnets sewn into it. They are held by velcro. They were also much cheaper than the rigid ones.
    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

  13. #13
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    397
    Just wondering here - can someone give me an idea how long they were in the hospital with this surgery? And, where did your family member stay while you were in the hospital? I'm assuming it's going to be a while before I can travel home after having surgery. Although knowing they do have drugs, but I am just not a drug person, if you know what I mean.... as soon as I can I'm off those goofy acting drugs. I hate the way they make you feel. I'd almost rather be in pain - well, almost... (tee hee!)
    Last edited by RitaR; 06-03-2009 at 09:02 PM.

  14. #14
    Join Date
    May 2009
    Posts
    84
    Have you tried Physical Tehrapy, CLEAR Institute, Spinecor or any alternatives to surgery yet?

  15. #15
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122
    Hi Rita!
    I'm new here too and it is wonderful.
    I'm 30 years old and I wore a milwaukee too when I was 12 for about a year. It certainly was not fun. I'm going to make you fell better saying that I have a 95* curvature. And those chest pains that you have I have them too. You are NOT alone. And I'm soo happy that I am not alone too. I 'm contemplating surgery as well. In fact, I have schedule the surgery for sep 3rd. I'm just nervous and hesitant about it. I do not have leg pains or back pains (only lower back sometimes and chest pains) but I don't want to have any pains in the future, so that's why I will probably go ahead with the surgery. I'm scared because it is a complicated open anterior and posterior ( that is 2 surgeries), so I guess I will have to be in the hospital for lomg time.
    I have my last appointment with my surgeron next week so we'll see.
    Pilar

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