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Thread: New member in pain with a few questions

  1. #1
    Join Date
    Nov 2011
    Posts
    4

    New member in pain with a few questions

    Hi Everyone. I hope I am in the right forum but if not point me in the right direction please.

    I had corrective surgery when I was 16 for my scoliosis and kyphosis. I had an S curve with a 60 and 55 degree curves and no one caught my condition until the kyphosis started and my spine started to stick out of my back. I had regular scoliosis screenings in school but for whatever reason they were NOT effective. By the time they caught it we tried bracing but it was ineffective and my curves were progressing quickly. I was growing rapdily and was already 6'2" my freshman year of high schoool. The bracing was terrible anyway, in retrospect having the surgery even with a fusion was so much better than that stupid brace. I had 2 rods put in and a fusion from T4-L4 with bone taken from my hip. I wish I had pictures to share but the surgery was done in 1999 and I only recently tried to get personal copies of my xrays and imaging only to be told that the hospital and doctor office had discarded them! I was livid! Especially when they made such a big deal about keeping them originally, even when we took them between offices they told us we were just "borrowing" the images and needed to return them ASAP.

    Anyway, the surgery was successful and while recovery was long and hard and I had an extremely difficult time coming to grips with the limited mobility afterwards for the most part my pain was reduced after surgery and recovery. I was extremely active and athletic pre-surgery and was an active basketball player. I was told by my doctors and surgeons that post surgery I had to stop playing ALL contact sports. So fast forwarding to today I've learned to deal with my limitations and with pain. The problem is that in the past year my pain has started to get worse. Either that or my tolerance for it is finally wearing thin. I have also put on probably 60lbs since my surgery and I struggle with my weight now since I cannot be active like I once was. My biggest issues right now are sitting at work and sleeping at night. I just CANNOT get comfortable when sitting or sleeping. It's so bad that I've spent some days at work pacing around my office and finding excuses to go outside for breaks. Sitting in an office chair just kills me. Unfortunately I do have a desk job and I spend most of my day sitting at desks working on a computer. At night I toss and turn constantly. I cannot stay in one position for more than 5 minutes. I've learned to deal with it but it bothers my wife and I don't feel like I ever have rested sleep. I wake up at least 3-4 times during the night in pain and contorted in some weird position. For years I was too busy dealing with college or starting my career and I just sorted powered through it all. It was miserable by I had enough other big problems in my life that being in pain constantly just seemed par for the course. Well I finally found some stability and now the pain seems that much more worse. I just want to know what it feels like to sleep well again, or go to work and not be in pain. It's hard to focus on my job when my lower back is throbbing in pain.

    So I have a few questions for the rest of you who seem much more knowledgeable about these things:


    1.) How much pain is normal for 12 years post-op? I can't tell if my tolerance has gone down or my pain has really gone up but I just don't seem to be able to take this anymore. I used to basically live on ibuprofen for pain but these days I can take 800-1000mg and it has ZERO effect. For years I just told myself that pain was normal and with my condition there's nothing I can do. I used to just deal with it ... but I feel like I can't anymore. My pain is a deep throbbing/burning pain in my lower back and I also have throbbing/sharp pains near my hip where they removed the bone. I've never understood the hip pain. Is that normal? Is this some kind of phantom pain? I had always assumed the hip would have just healed itself I wouldn't have to worry about it anymore.

    2.) How do the rest of you stay in shape? What works best? I've tried diets ... but one of the few things I enjoy in life is food and I've never done well with diets, I just can't stay on them. I also struggle with exercise because I can't do the things I used to do. I've gone to physical trainers and physical therapy but I get frustrated because half the things they want me to do I can't do. They sit there and give me a blank stare when I tell them I can't do situps and they look at me like I'm not trying. It's frustrating when people don't understand what it's like to have your spine fused. I had one physical therapist try to give me all these exercises to do with bands on a wall and I kept trying to explain to her that I can't do things like rotate my whole back or bend over and they just don't get it .... what does work? All of my weight is on my stomach. I walk a lot and do weight training but I haven't found any way to keep my beer belly down as I can't really do sit ups, crunches, or anything like that.

    3.) How do you sleep? Am I the only one who tosses and turns all night? I've had people tell me to just put a pillow between my legs, or under my back, or rest my arm on one, etc etc etc. Pillows don't help because within 30 - 60 seconds I begin tossing and turning due to pain and the pillows are quickly discarded. I can't STAY STILL in one position long enough to fall asleep. Even when I've heavily medicated myself with sleeping pills once they wear off I begin tossing and turning again and I still wake up feeling unrested.

    I know the first answer was to go back and see someone. I tried to see a supposed Ortho specialist last March but he blew me off and passed me on to his PA who didn't seem to know ANYTHING about scoliosis. They took X-Rays and I got a note back saying, "Fusion looks good, you are fine." and that was it. Well I'm NOT fine, I'm in pain. I saw the xrays and the rods do look fine, I didn't see any cracks or anything obvious, but that doesn't mean I'm fine. I was so frustrated. I started going to a physical therapist in September and I have been working with her. She's nice and tries to help but I'm not sure she understands the best things to do for me. She's tried to find exercises that will strengthen my core but there are very few things I actually do that don't hurt my back significantly. We've tried a few variations of leg lifts that seem to work, but they are extremely painful on my lower back. I'm not sure if the PT is helping or not. I'm still in pain and in fact sometimes I'm in more pain after PT. I have lost 20 lbs since starting the PT which is nice though.

    So I did some research and found a new spinal specialist in my area. Dr Good at the Virginia Spine Institute? Anyone heard of him? He is close to me and specializes in Adult Scoliosis so I hope he can help. I have an appointment Monday and they said they will take xrays and maybe a CT. Anything I should ask for or take with me? I wish I had some existing imagery to bring with me but I don't.

    This community seems very well informed and I wish I had known about it the past 12 years. Thanks in advance for any help.

    -Mike

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Hi Mike. Welcome to the forum but sorry that you have need to be here.

    I am not the most knowledgeable person here by a long shot but since you haven't had any other replies yet, I thought I'd answer to the best of my ability.

    1. I don't think there's a "normal" amount of pain 12 years out. Ideally there should be none. If it was me, I'd want to be checked for an area of non-fusion and you definitely need an experienced Scoliosis Surgeon on your team. I hope someone here can give you a recommendation of one in your area.

    2. For exercise, I walk. I walk most days and I walk fast, but not necessarily a long distance. Around 2 - 2.5 kilometres. I would quickly bore of walking if I forced myself to do long distances. If I find myself gaining weight, I don't bother with diets because my diet is already good, I simply reduce the size of my portions. Which eventually creep up again because my eyes are too big for my stomach.

    We also kayak in the milder weather.

    3. I'm a terrible sleeper. Was, before surgery and after about a year of sleeping well, post-op, I've gone back to my old bad habits. I have no pain so it's nothing to do with scoliosis. Do you have a foam topper on your bed?

    I'm always shocked when doctors brush off patients with legitimate problems. If they don't know the answer, why don't they refer you on to someone who does? I have come to believe you have to be pretty forceful with doctors, stand your ground and tell them, if you can't fix it, send me somewhere I can get help. I've read about some patients getting a very expensive, time consuming run-around, a complete waste of time, energy and money. The trick is to find a good doctor, usually on a recommendation and you should be able to get one here. Wishing you the very best of luck!
    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

  3. #3
    Join Date
    Nov 2011
    Posts
    4
    Thanks for the response Jennifer. I can't even imagine what it would be like at this point to have NO pain. At this point I'd settle for going back to just a small amount each day with some real sleep.

    I think walking is a great idea, but I know what you mean about getting bored. I do enjoy waking though as it's one of the only exercise activities that doesn't hurt, in fact walking feels GOOD. I really do miss playing full contact sports and wish I could go back to that but oh well ...

    It sounds like the real first step is finding a good doctor. So with that in mind anyone have recommendations for the Northern Virginia/DC Metro area? I've had people refer me to Dr. Patel at Commonwealth Orthopedic but I already tried to make an appointment with him and his nurses refused to schedule with me saying he only treats non-adults. So that was a bust. I also tried to see another spine surgeon with the Commonwealth Orthopedic group (Dr. Mazahery) but after waiting WEEKS to get in to see him I show up and they send me to his PA instead who doesn't tell me anything just takes an x-ray and sends me on my way. Then I got a letter saying my X-Rays came back negative and everything is fine. I got the distinct impression that Commonwealth was more about grinding patients through the system than actually treating anyone so I'd REALLY like to avoid them in the future.

    My current appointment for Monday is with Dr. Good at the Virginia Spine Institute in Reston. I wasn't able to find a whole lot of information about him online but he is apparently an ADULT Scoliosis Specialist and the only one I've been able to find in the area so I hope this will work out better.

    If anyone has any recommendations or experience with these doctors please let me know, I'd appreciate it. I can't imagine that in a metro area as huge as DC there aren't more good doctors. I really really wish the doctor who did my surgery was still around as he was the best. Dr. Roberto was in Tucson, AZ where my surgery was performed but this was in 1999, it looks like he has since moved on and I'm not sure where to.

    Thanks for any help/suggestions.

    -Mike

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Mike
    Welcome.

    So sorry you are struggling. Have you ever tried Celebrex? Its an NSAID, and will help with pain...Water immersion is also helpful. I like hot water.

    Dr Good has been mentioned here, just use search.

    You might have issues below your fusion if you are having problems sitting. Do you have sciatica? Do you have any trochanter or leg pain?

    A foam topper on your bed will help with sleeping.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Hi Mike...

    Pain is totally subjective. So, unfortunately, I can't compare my pain with you, or with anyone else.

    What you need to find is someone specialized in adult scoliosis revision surgery. I can guarantee you will not be dismissed (unless they cannot find a specific reason for your pain, which is pretty unusual). I have heard very good things about Dr. Khaled Kebiash (http://www.hopkinsortho.org/khaled_m...sh_md_msc.html).

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  6. #6
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Mike,

    your post just breaks my heart. I really can't advise you as I"m only 3 years out, but it just doesn't seem right that the last Dr. you saw simply dismissed you. Take Linda's suggestion to look for someone else.

    I, like the others below, am an extreme fan of memory foam toppers. I can't sleep without mine.

    Let us know what Dr. Good says.

    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

  7. #7
    Join Date
    Nov 2011
    Posts
    4
    Thank you all for the responses and I agree on the memory foam topper they are very nice. I have a mattress right now that has a layer of memory foam at the top of it which I like but it's still overall supportive. I have trouble with ones that are ALL memory foam as I tend to just sink into them and then feel constricted/hot. My bed is really comfortable but when my lower back is aching in pain there just is no comfortable position, but I don't think it's the bed that's the issue. I will see how my appointment with Dr. Good goes on Monday. If it doesn't feel right or I'm not getting any kind of answers I will try Linda's suggestion. Baltimore is only an hour away from me.

    I'm hoping that there are some non-surgical options I can try first ... I'm a little scared about the idea of a 2nd surgery. Is it as bad as the first one? I was 16 for my first surgery and it was a life changing experience to say the least. But the recovery was made easier by the fact that I had parents to take care of me and I took a semester off school entirely. I don't really have a safety net like that anymore and if I missed more than a few weeks of work I'd be in serious financial trouble.

    I've read a lot here and elsewhere about getting fused all the way to the sacrum. If I am fused to L4 now how much of a difference would it be getting fused all the way? I'm not really active like I used to be anyway and at this point if I could sleep and sit comfortably I'd be a lot happier.

    Thanks again for all the responses ... it's nice to meet and talk to other people who have gone through the same things. It's hard to discuss with my wife sometimes as she doesn't really understand what this feels like.

  8. #8
    Join Date
    Oct 2011
    Location
    New York
    Posts
    17
    Hi Mike,
    Of course as everyone has noted, trying to find a good doctor to help should be the first step.

    Over the years I found the following things helped my pain.

    1. Walk one mile every day (which i have done until two years ago)
    2. Stretch exercises for hamstrings and lower back
    3. Massage therapy (myofascial release really helps me)
    4. Change from a high stress job to one of lesser responsibility
    5. Reduce or eliminate sugar and caffeine when pain increases.
    6. Always sit in a chair with a cushioned, yet flat seat. Use a blanket to cushion and flatten out car seat.

    Sometimes it amazing how just a small change can help.

    Roxanne
    Roxanne
    Milwaukee Brace 2 years
    Fused 1976
    Fusion Repair 1979

  9. #9
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Welcome Mike,
    Have you tried swimming for exercise? In addition to finding the right Doctor, you need to get a referral to a good Physical Therapist trained in spinal fusions. Water therapy is really the best and a pool that is kept at around 80 degrees.
    I agree with you on the memory foam. I couldn't move in it. I bought a latex foam bed and really love it. I hope you can get the help you need.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  10. #10
    Join Date
    Nov 2011
    Posts
    4
    Quick update:

    My appointment with Dr. Good went very well. They took X-rays which I will try to figure out how to post later but he said that my existing fusion and rods look very good. The problems I am having are all below my existing fusion. He wants to explore all non-surgical options first so he started me on steroids to reduce inflammation and gave me some pain medication to help with the sleep. I have to go get an MRI done and I'm a little nervous about that, never had one. Is it safe with the metal implants? I'm assuming he wouldn't have ordered one if it wasn't but the idea of a huge magnet and my back makes me cringe.

    Other than that I'm going back to physical therapy and we'll see how that goes. He said that I definitely need to lose 20-30 lbs and if I do I will see an immediate impact in my pain levels so I'm focused on that. Starting a diet right before Christmas sure sucks though. : /

    I'll look into water aerobics. I'm not sure where I would go for that ... there's one gym I know of that has a pool but it's not very clean in there and its always crowded, not to mention they want $90 a month for a membership. Anyone know of any good facilities with water aerobics in the NOVA area?

  11. #11
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Quote Originally Posted by Mike View Post
    Quick update:

    My appointment with Dr. Good went very well. They took X-rays which I will try to figure out how to post later but he said that my existing fusion and rods look very good. The problems I am having are all below my existing fusion. He wants to explore all non-surgical options first so he started me on steroids to reduce inflammation and gave me some pain medication to help with the sleep. I have to go get an MRI done and I'm a little nervous about that, never had one. Is it safe with the metal implants? I'm assuming he wouldn't have ordered one if it wasn't but the idea of a huge magnet and my back makes me cringe.

    Other than that I'm going back to physical therapy and we'll see how that goes. He said that I definitely need to lose 20-30 lbs and if I do I will see an immediate impact in my pain levels so I'm focused on that. Starting a diet right before Christmas sure sucks though. : /

    I'll look into water aerobics. I'm not sure where I would go for that ... there's one gym I know of that has a pool but it's not very clean in there and its always crowded, not to mention they want $90 a month for a membership. Anyone know of any good facilities with water aerobics in the NOVA area?
    Mike, MRI's with metal implants are very safe. I have had several since my implants were put in. Good luck
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  12. #12
    Join Date
    Oct 2011
    Posts
    7

    I feel your pain

    Hey Mike,

    Sorry to hear about your pain. I had been fused from T7 to L4 when i was 18. I was fairly pain free up until this last year. I feel your pain when trainers try and make you do things your body just cant and my advice is find another trainer. My current trainer will try different exercises with me when i tell him something wont work. It was ironically when I stopped working out for 6 months that the pain started up and was diagnosed with spinal stenosis (just had surgery). I hope you find relief with the physical therapy as surgery is never easy. A big part of losing weight is diet. I would try to calorie count in addition to starting light exercise.

    P.S does anyone know how to add a signature to your posts?



    T7 to L4 hartshill rectangle fusion 98 (18y/o)
    laminectomy of L4 and L5 with partial hardwear removal and fusion to L5 revision 2011 (31y/o)

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