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Thread: A little advice, please

  1. #1
    Join Date
    Jan 2008
    Location
    Oklahoma City, OK
    Posts
    189

    A little advice, please

    Ok, I don't know if it's because it's Friday night after a long week and I'm knuckle draggin' tired or because I had a particularly frustrating conversation with my mom tonight, but I find myself second guessing my new-found excitement about forging ahead with surgery. My mother is thoroughly convinced surgery is not the way to go and (strongly) encourages me to do physical therapy. Yea, I know, I'm an adult and all that, but sometimes the child in me takes over. I'm sure PT is probably the prudent next step, but right now I don't feel like I have the energy to spend trying something that will 'possibly' help with the pain, and time is an issue as well. I would love to hear what PT has done, or not done as the case may be, for others so I can maybe make a decision and stick with it. I know everyones situation is individual but any input will be most welcomed!
    Thanks for indulging my indecisivness!
    Becky, 46 years old
    Diagnosed at 13 with mild scoliosis
    Ignored until 448/07
    Left thoracic 49* T5-T11
    Right thorocolumbar 60* T11-L4
    Surgery Monday, June 9, 2008 Oklahoma Spine Hospital
    Fused T-10 to L-5
    14 titanium pedicle screws
    Corrected to approx. 10* YEA!!!
    Email

  2. #2
    Join Date
    Sep 2007
    Location
    Boston, MA
    Posts
    183

    Oh, PT...

    My surgeon perscribed PT for me before scheduling surgery. I was told there was only about a 50/50 chance of it being effective for reducing pain. I was discharged after about 5 weeks (though my PT knew after about 3 that we weren't making much progress, we wanted to be comprehensive to be SURE it wouldn't help in more time).

    For me, I needed to know for myself that I'd done everything I could before resorting to surgery. Even though PT wasn't the solution for me, I'm glad I did it. Surgery is not an easy road, and it's been good for me to know it was necessary and the last resort after trying other more conservative treatments.
    2000 34*L/39*T
    2007 44*L/53*T

    12.3.07 Posterior Spinal Fusion T4-T12
    (initially planned T4-L1)
    12.18.07 11*L/10*T

    23 years old

  3. #3
    Join Date
    Jan 2008
    Location
    Oklahoma City, OK
    Posts
    189

    Thanks

    Thanks, vndy, for the reply. I know PT is probably the right thing to do next, but Feb. thru May is my REALLY busy time at work and I can't afford to ask off too much in that time frame since my good insurance is thanks to my job with the state, which I certainly don't want to lose. So if I wait until June to start PT and it doesn't help, then I've lost 3 maybe 4 months of precious time. My oldest daughter will be a senior in high school next year and if I'm going to do surgery I want to do it as soon after May as possible so I can enjoy as much of her last year of high school as I can. Otherwise, I'm looking at a year and 4 months or so before surgery. That just seems sooooooo far away. I'm not sure my prescription for Lortab will last that long. Please forgive me for rambling. I'm just trying to work this all out and between my cat and Captain Jack Sparrow (I'm watching Pirates of the Caribbean for the 93rd time) I'm not gettin a lot of feedback.
    On another note I just want to say how grateful I am for the caring and compassionate people I've found here. You are all so amazing and entertaining at the same time!
    Becky, 46 years old
    Diagnosed at 13 with mild scoliosis
    Ignored until 448/07
    Left thoracic 49* T5-T11
    Right thorocolumbar 60* T11-L4
    Surgery Monday, June 9, 2008 Oklahoma Spine Hospital
    Fused T-10 to L-5
    14 titanium pedicle screws
    Corrected to approx. 10* YEA!!!
    Email

  4. #4
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    I was 45 when I had my surgery, and my pain level had increased over a period of 10 years prior.

    It's you body, your pain and your decision. No one knows what you're going through or how you feel unless they've been there.

    I was to the point where I couldn't even get a good nights sleep because of the pain. Now I can lay down and actually have no pain for the first time in so many years, I can't even remember.

    It's only natural that people that love you will worry about you taking this step, so you have to understand their concerns, but the bottom line is, it's your body, your pain and your life. That's how I had to rationalize it.

    Good luck and we are all here for you,
    Shari

  5. #5
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    The only thing that convinced me to go ahead with surgery was getting second and third opinions from surgeons who all recommended the same thing. I found it maddening that such a serious surgery as this is considered elective -- it would have been so much easier if the condition was life-threatening!! PT will help your pain and discomfort, but it will do nothing to stop the progression IF your curve is progressing. Mine had been progressing all though adulthood, but it really sped up in my late 40s/early 50s. That scared me enough to take the plunge.

    Good luck -- it ain't easy, I know.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  6. #6
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978

    Thinking about you!

    What a difficult time for you! I am so glad my youngest was already in college when I had my surgery-- but there will always be "something" coming up that is important. You are going to have to weigh all the pros and cons of having surgery (and even PT) against your desires to be able to do everything with your family. Having had three kids of my own, I know just how busy you can get with the chauffeuring and going to school events/sports/etc., along with working and cooking and keeping house. After the school years are over, there's college, weddings, babies, and so on. I don't think there's ever a good time. It's always possible that your pain will keep you from enjoying some of this--or even going to it. And yes, it's quite possible you might have to limit what you do post-op for awhile. I thought I'd be able to return to work after 3 months, but wasn't ready yet. However, I'm 56-- many that are more your age (and even mine) have been able to do so much--so much sooner! I had started a post awhile back on returning to work--and if you read that one, you'll see that some bounced back and others didn't. Also, not that many people are on this forum--there are probably tons who went back to their jobs and other functions fairly quickly that we don't know about, because they are busy being very busy doing just that. All the previous posts in this thread had very good comments. Best wishes as you figure out what course you will take.
    67 and plugging along...
    2007 52 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 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

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

  7. #7
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290
    Deciding to have the surgery was very easy for me, deciding when to do it was the tough part. I am going through a divorce so its only me and my 15 year old daughter here, the ex lives an hour away and doesn't come here very often, although he was there for the surgery so my girls weren't alone. My oldest daughter is away at college 2 hours away. We live in a remote ski resort town that is an hour from the nearest Target! I am 2 1/2 hours from my surgeon and hospital. I also coach wrestling at out local high school. I made the choice to have surgery over Christmas break so my oldest would be home for 6 weeks. This is right in the middle of wrestling season and it has been so hard to not be there with my team, but it was the right choice for me. My younger daughter is a freshman in high school and not old enough to drive. My family(my sister, brother in law and grown niece) have been very helpful in offering to drive her where ever she needs to go. I have also had a large number of friends bring food and offer rides. You will be surprised at how much help will be offered to you.

    I just turned 46, but I knew I was only going to get older and the curves were only going to get worse, even though my surgeon said there was no rush and I could wait 5 years if I wanted to. I wasn't having a lot of pain but my pain had increased. I almost decided to wait until next summer and in retrospect it is a good thing I didn't. About a month before surgery I just got so tired. I have no idea why, but I was just worn out. I don't think I could have held out for summer.

    I did prepare for surgery by hitting the gym and getting in the best shape I could get myself in over 8 weeks. I gave myself 12 weeks, but I was too tired to go the last 4 weeks. I think it has really helped with the recovery. I built up my stamina on the treadmill and elliptical and I added muscle to my legs and upper body. I also did some core work. If I could do it again I would work on my arms and legs as well as my core, not so much on my back.

    I hope my story helps, but in the end it really is your decision. My family was scared but I was just fine. I knew it was a huge surgery, yet somehow I knew I would walk away from it better than I was before. I was in the pre op room so excited to go into surgery and wake up with my new back. I think I scared my surgeon because I really had no fear or second thoughts. He wasn't sure if he would have to fuse to the sacrum or if he could stop at L5...I just looked at him and told him to treat me like he would treat his wife and do what he would think was best for her. I think that shocked him, but he really does have the training not me and I trust him. Anyway, I know you will make the decision that is right for you. Good luck and feel free to contact me if I can be of any help.
    Alicia
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

  8. #8
    Join Date
    Dec 2007
    Location
    bucks county PA
    Posts
    156
    Hi, I had to go the PT route because along with the curves I had hurt my back at work so needed to do that for workman's comp. The 1st 4 weeks I did have some improvement with pain, but things kind of went backwards the 2nd 4 wks. (partly because the guy that read the MRI never noted annular tears on the report so I was doing some things that I shouldn't have).I've opted for surgery. Oh, I'd been doing Williams stretches(I think thats what they're called) for over 10 yrs for scoli. Might have helped at least keep me not so stiff. My PT was always commenting how flexible my legs were.
    My curves are T60* and L58*, Dr Anderson is planning T4-sacrum. Yeah its scarey, but I'm tired of the pain and as the others said, there will always be something. I decided that I can't work as I am because my job involves heavy lifting and bending, which I can no longer do and things aren't going to improve or go away. My parents are also very concerned and wish I wouldn't do this. So just last night I e-mailed my x-ray (its not so great from August when the tech made me stand up straight 0 but I hope this will show them why I made this decision. Good luck! It's YOUR decision, NO ONE can make it for you.

  9. #9
    Join Date
    Jan 2008
    Location
    Oklahoma City, OK
    Posts
    189
    Well, I've decided to give PT a try. I'm going to call my pain management doctor in the morning and see what I need to do. I think I need to do this so I will know for myself I've tried everything. Thanks to everyone for the good thoughts and advice. As always, your insight is always welcome!
    Becky, 46 years old
    Diagnosed at 13 with mild scoliosis
    Ignored until 448/07
    Left thoracic 49* T5-T11
    Right thorocolumbar 60* T11-L4
    Surgery Monday, June 9, 2008 Oklahoma Spine Hospital
    Fused T-10 to L-5
    14 titanium pedicle screws
    Corrected to approx. 10* YEA!!!
    Email

  10. #10
    Join Date
    Feb 2007
    Posts
    135
    Hi Becky,

    As far as PT and the time constraints go, I was prescribed 6 weeks of PT by my primary care doctor before ever considering surgery. I met with PT once a week for an hour, and they gave me exercises to work on for a week until we met again, and so my exercises progressed that way (I couldn't take much time off work either).

    For me, the PT did certainly help relieve some of the aches and pains my scoliosis was causing, and my PT showed me things like logrolling, but it unfortunately was not my final answer. My MRI showed progression of the curve and disc degeneration and dessication. Both surgeons I saw recommended surgery, but it wasn't a life-threatening thing, so it was a difficult decision.

    I talked with a couple of key people in my life, took about a month to work through everything, and then told other people in my life. I knew that everyone would have an opinion, and "back surgery" has a negative connotation for so many. So I wanted to make a decision, and then just tell people what I WAS going to do, rather than it seeming open for discussion. Obviously, your mom is not "other people", but is it safe to say she may not be as knowledgable on the pros and cons as you? Scoliosis is a unique condition, and there's a lot to learn before making choices.

    That said, I think it's a great idea to do some PT, and see what it can do for you.
    31 year old female
    55* (day of surgery) thoracic curve w/compensatory lumbar
    T4-T12 on Aug 15, 2007

    MRI, pre-surgery
    Xray, 3 mos. post-op
    Machu Picchu, 8 mos. post-op

  11. #11
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294
    Show her your x-rays. This often shocks people into support.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  12. #12
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290
    My primary physician sent to to a physical therapist first too. It was recommended that I do PT for 6 weeks, however I asked the physical therapist for a referral to my surgeon. I told him that I had no problem doing PT but would like to hear what the surgeon had to say. I also to him that if the surgeon said go do PT I would have no problem doing as much PT as they wanted me to do. My surgeon took one look at the xrays and said I could have the surgery any time over the next 5 years. I decided right then and there that sooner was better than later for me as I was not getting any younger and my curves were progressing. While I know PT would have helped it wouldn't have fixed anything and I was so ready to get fixed!
    Last edited by Geish; 01-22-2008 at 09:37 AM.
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

  13. #13
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    You have to be careful with PT, just as with anything else medical. There are good therapists and there are bad ones. Unfortunately, I've run into more bad ones than good ones. Properly done, PT will help strengthen your muscles and make you stronger. Which will help when you have surgery. Being a mom with teenagers when I had my second back surgery, they were a big help. HOWEVER, surgery does impact their life also. Getting it done before your child's senior year would be a good thing. You will be so busy helping them get ready to graduate that taking time for surgery could cause problems. I had a nerve abutalation 6 weeks before my younger daughter graduated and I had a difficult time dealing with the pain and keeping track of all her activities and ceremonies that I had to go to.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  14. #14
    Join Date
    Jun 2005
    Location
    Bloomfield Hills, Michigan
    Posts
    285
    I agree with Rainbow - there's good PTs and bad PTs. I can't count how many different physical therapies I have been through since the late 1980s, before surgery and after each surgery. For me personally, there was only mild improvement in pain levels. What helped me more than anything was 7 months with a personal trainer to do weight training. He knew my condition (2 fusions) of course, so there were some exercises I couldn't do, but it helped a ton with the aches and pains I had. He couldn't fix my flatback syndrome though, so I ended up with a third surgery. The trainer was expensive, and I don't necessarily recommend it for everyone, but it was the first time in a long time that I could squat down and get right up again without pain and without holding on to anything. A big deal for me.

    As everyone has already said, PT may help with pain in the short term but it won't fix your curve. Good luck with whatever you decide.
    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.

  15. #15
    Join Date
    Jan 2008
    Location
    Oklahoma City, OK
    Posts
    189

    You all are amazing!

    Thank you everyone for the encouraging words and wonderful advice. Just to update you, my very well-meaning mom arranged for a 1 1/2 hour massage yesterday since I was off work. I was pretty aggrivated when she called and told me but I thought 'hey, take advantage of it and go relax for 1 1/2 hour!'. Ok, we're not talking about a relaxing massage, we're talking-try-not-to-scream massage. Some of it did feel good and the massage lady made a comment about how tough I am for some of the stuff to not hurt. I'm a little sore today but glad I went. It's not the answer my mom was hoping it would be though and I knew that before I ever went.

    I like the idea of showing my mom the xrays. I think I'll try that. Thanks Karen!

    I called my pain management doctor yesterday about getting physical therapy going. They are checking with my insurance company about what facility they will cover. I'm going to call my surgeon this morning and see if he has any input he'd like to add. I'm really pretty leery of PT just because it is sort of a crapshoot finding a good one and I really don't want to waste any more time weeding out the bad ones.
    Becky, 46 years old
    Diagnosed at 13 with mild scoliosis
    Ignored until 448/07
    Left thoracic 49* T5-T11
    Right thorocolumbar 60* T11-L4
    Surgery Monday, June 9, 2008 Oklahoma Spine Hospital
    Fused T-10 to L-5
    14 titanium pedicle screws
    Corrected to approx. 10* YEA!!!
    Email

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