Page 2 of 3 FirstFirst 123 LastLast
Results 16 to 30 of 39

Thread: surgery at 13, now in my 40's what to expect?

  1. #16
    Join Date
    May 2005
    Location
    Southern NJ
    Posts
    2

    Former 80's Philly Shriner's Kid w/2 ops

    Hi Debbie!
    I also had two scoliosis ops at Shriners in Philly (1982 and 1984). Spent my childhood in the "Milwaukee Brace" (there is NOTHING good to say about that thing!) Dr. Steel messed up the first one by using too short a rod. Dr. Betz fixed it the 2nd time with a 13" Harrington. I have had nothing but problems since then. In my mid-20's my 3 lowest discs were crushed due to the rod placement and the onset of flat back syndrome. I can't help but wonder if you have the same thing going on. I get pains in all my joins from my neck to my ankles because of misalignment. My body is twisting. Upper body heads one way, lower body heads the other way (it's subtle from the outside, but I FEEL it on the inside and when I walk). Knee problems, pelvis problems, you name it... So, if you haven't already done so, do a Google or www.dogpile.com for "Flat Back Syndrome" and read up on it. Not much you can do about it, but it sure does explain what's going on with your body! Depending on your currently flexibility, maybe just basic stretching excercises to keep as plyable as possible.

    PS: Do you remember those really nice x-ray ladies? The crappy toys in the crappy waiting room. And the WAITING, in the waiting room? My first night in the "girls ward" we had a pizza party! That was fun. I remember the Shriners would come around often and give out new toys, games and writing stuff. OHHH, did you have to do that crazy spinal stretching contraption every few hours to "prep" your flexibility before surgery. What a crock!!!! I always got in trouble from the nurses for not doing it and hiding from it. I've been through the "six-month-walking cast", the "lay-flat-for-three-months-without-moving-body-cast", the dreaded Milwaukee and the oh-so-horrid plastic-jacket brace. Oh well, I've bent your ear enough.

  2. #17
    Join Date
    Apr 2005
    Posts
    9
    Quote Originally Posted by kim1962
    It is good to finally find someone who has gone through scoliosis surgery so long ago. I had my surgery 31 years ago. About three years ago I started to experience numbness down my one leg and weakness in my legs going up stairs. I had some similar things happen to my one arm and hand. I went to numerous doctors. One thought I had MS and I went through battery of test but nothing could be found. After a couple of years of going from specialist to specialist my doctor recommended me to do therapeutic massages along with seeing a chiropractor. This has truly changed my life. 2 to 4 times a month I get deep tissue massages and see a chiropractor. I will confess that I was scared about the chiropractor, what with the rod, but the doctor is very careful when doing an adjustment. It turned out that I am experiencing muscle spasms. I also was wondering if anyone else had had this happen to them. I still find it hard to sleep and can only do so comfortable in one position. I hope this can help you.
    hi kim
    deep massages are very good, i go to physical therapy for my upper back, because i have pain in neck, shoulders and mid back. chiropractors never worked for me but if its helping you, keep going. My fusion is broken at the t-10 and t-11 area, so therapeutic massages are great. My left arm and hand get less numbed. sleeping has always been a problem. i can't tell you how many pillows i use and toss all night long. every morning stiff lower back. i tried every mattress possible until i came across the Temperpedic mattress! it is incredible, i just got it a month ago, and after so many years of sleepless nights, i am in heaven. this is a very expensive mattress, but for me it was worth it. you can buy it and try it for 90 days or you can get all your money back if you are disatisfied. I would recommend this mattress for all scoliosis patients. too bad insurance does not cover it!
    feel better,
    sonia: spinalfusion 1979, broken rods and removed in 1985

  3. #18
    Join Date
    May 2005
    Posts
    1

    fusion in '77

    I had a PSF with Harrington rod instrumentation in 1977 when I was 14. I had an "S" curve and ended up with one rod and a fusion from T4 - L4. Over the last 10 years, since the birth of my third child, I have had increasing low back and neck pain and stiffness. Last summer, right sided sciatic pain joined the list. I have found that if I maintain wellness behaviors, I do much better. I ride a stationary recumbant bike 20 min/day followed by 15 min of yoga. I see a very careful chiropractor, get accupuncture, and deep therapeutic massage & muscle release from a physical therapist as well as regular massages. I also invested in a tempurpedic mattress and began sleeping all night for the first time in years. Last year I got an injection of steroid & anethestic at the L4-L5 area for the sciatic pain which was not responding to other treatment. The results were tremendous and I was able to resume my self care (riding, yoga) because I wasn't in pain! I also began taking antidepressants 2 years ago to cope with the rollercoaster ride. After an initial adjustment period to the medication, I usually can handle things okay. Chronic pain can drain every ounce of pleasure from your life. FYI - I also have mitral valve prolapse syndrome, which is also known as a form of dysautonomia. People with this disorder have a higher rate of idopathic scoliosis. Might want to check it out.

  4. #19
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    5
    Greetings! I just discovered NSF and this forum. Wow! Who knew. Like many of you, I was diagnosed when I was 10 or so, wore a Boston brace and then had spinal fusion L3+4 I think. (32 or 36 deg. curv) Besides being a litte crooked...not enough that anyone notices until i point it out...i've not had any problems what so ever from the surgery until about 5 years ago. I started developing an ache in my lower back just below the fusion. I went to the doctor and he said that it was because the joints just above and below the fusion are taking on extra stress. when my back hurts it feels like someone's poking me right in the spine or as if my skin across that area is too small and it's stretched too tight. usually if i twist myself a little or readjust how i'm sitting, it gets better. Has anyone had this?

    Also, the reason i went looking for things on scoliosis is because i need to get in shape. i'm overweight, not grossly but would like to drop 20-30 pounds. the problem is that my joints always hurt. it started with my knee and my heels. i figured it was because i've been stepping incorrectly for my entire life (33 yrs.) and that's worn out those places. but lately i've noticed that other joints hurt that i didn't think should be affected...like my elbows, shoulders, upper back, fingers....ok, everything. Anyone else have this?

    I have the same aches and pains as my 67-yr old mother! (i'm adopted by the way, so it's not genetic from her at least)

    Give all this, what kind of exercise do you all do? i've tried running and weight-lifting...damn near killed myself. i've tried water aerobics. that made my knee hurt more..go figure! It's really ridiculous. If I walk too fast, the outside of my lower legs hurt. Is that just me? So, even an eliptical machine, which is supposed to be the best and least impact hurts (and my toes fall asleep). I really want to get in shape, but have no idea what to do about it. I'm really not flexible at all (is this the scolio too?) but would be willing to try yoga. i'm just afraid that i either need a class of 60-yr olds or remedial yoga or something! lol

    Sorry this post is so long. I'm just so excited y'all are here. Any help is appreciated! Thanks!!!

  5. #20
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi LHM...

    Welcome.

    I know how difficult it is to get motivated when everything hurts. I walk on a treadmill four times a week. When I first start, just about everything hurts. But, if I stick to it, I find that I almost always work out the pain. If I didn't take an NSAID (non-steroidal anti-inflammatory), my pain level would be higher.

    My advice would be to find a rheumatologist. You may actually have some sort of disorder that's causing your pain.

    Regards,
    Linda

  6. #21
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    5
    Oh lord! that's what I was afraid of. Thanks! So the chronic aching isn't due to the Scolio?

  7. #22
    Join Date
    May 2005
    Posts
    19

    exercise

    Hi LHM,

    I am wondering what kind of water fitness you tried. I have a lot of pain in my low back, legs, and tore ligaments in my knee when I was younger. I have been doing deep water fitness classes since February (because everything on land is way too painful anymore) and it is wonderful! I wear a floatie belt and use foam dumbells. There is no strain on my knees or back (unless I try to twist) and it is a total body workout. There are also deep water arthritis classes at the Y in my town. This might be something to investigate as well. Good luck and hang in there.

    You've found a great resource.

  8. #23
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    LHM...

    There's no way to know for sure, and we're not doctors. If all of your joints hurt, I can't imagine that it could possibly be a problem with scoliosis. If it were, I think you'd find one knee or hip hurting, but not the other.

    Regards,
    Linda

  9. #24
    Join Date
    Apr 2005
    Posts
    913
    Hi LHM

    I also have pains in the non fusion areas, neck and lower back and like you said it's normal, b/c of the compensation. I get pinch nerves, and aches as the day goes along, and the more I do. Acupuncture can help, massages and light exercises such as walking, swimming, stretching, light weight lifting and bycicling.

    As for the pains all over, I do get those from time to time, and it's nerves, that come from neck problems and the back(sciatica, finger and arms, etc). Fall and Spring are worse. But I used to get HORRIBLE leg/heel/knee aches, and it was solved with orthesis(shoe insoles), that you get from a podiatrist. I used to think, and doctors as well, that all these pains were from my scoliosis, but they weren't, they were b/c of my flat feet. I highly recommend seeing a podiatrist if you can think it might be from there, and he could check out your feet, and maybe have orthesis done that you can put in your shoes, that could be it, who knows.

    Hope this helps

  10. #25
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    5
    Thank you all for replying to my post. The water fitness class was in shallow water, and i think there was just too much deep bending and water-walking. i think i'll try a deep-water class instead.

    i have store-bought orthotics, but perhaps that's not enough.

    I'm definitely gonna look for a rheumatologist and podiatrist. Thanks for the reminders. I forgot about the rheumatologist.

    all i know is that a couple hours in home depot/ikea/the mall and my feet, knees, hips and lower back hurt. the other day i put together some lawn furniture. like an hour's worth of work and i was sore for a day and 1/2. i know part of it was muscular cuz i'm out of shape but the sciatica flared up too. cleaning the house does me right in. now i have a housekeeper. it's the best thing ever!!!
    Last edited by LHM; 06-10-2005 at 03:21 PM. Reason: forgot something

  11. #26
    Join Date
    Apr 2005
    Posts
    913
    LHM... it looks like feet problems when you talk about the Home Depot and shopping, same thing happens to me if I don't wear my insoles and wear open toe shoes. Even if hard floors are still hard on my back, the orthesis help a great deal.

  12. #27
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    5
    Has anyone had a hip graft? Does it hurt still? Mine's always hurt. Used to be only when you pressed on it. the surface nerves are shot i think cuz if you just touch lightly i can't feel it, but if you press i swear i'll jump across the room! lol

    but just about when the knee stuff started, right where the scar is started hurting on its own-deep sharp pains-sometimes for no reason and sometimes cuz i moved wrong or am sitting wrong. Anyone else experience this?

    Sorry for all my "anyone else" questions. This is just the first time I've found such a large group of folks in my same predicament. Thanks again, all!

  13. #28
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    LHM...

    Bone graft site pain is very common. I know people who tell me that they still have pain 20 years after surgery. I'm one of the fortunate ones who doesn't have any pain there at all.

    Regards,
    Linda

  14. #29
    Join Date
    Apr 2005
    Posts
    913
    Yes, it depends for people, I sometimes get pain only when someone presses hard on it, and other times, like any scar, it hurts more when the temps are humid. I do massage it everyday with oil, as my physio had told me a few years ago that I should have had it massaged after surgery, it makes it heal better but noone told me.

  15. #30
    Join Date
    Jun 2005
    Location
    Maryland
    Posts
    5
    sweetness--that's too bad. i remember my mom rubbing cocoa butter into my scars every day for weeks if not months after the surgery. i have olive skin, so the scars are a little raised, but i remember her saying that the cocoa butter was supposed to make them heal better. i didn't know that about humid temps. i live in the DC area so in summer it's always humid. it started this year about a week ago, and it won't let up until late sept. or so.

    i have to say that i'm amazed at some of the stories on this board. i've really had relatively little problem from the scolio or post-surgery and really thought i was the only one having strange physical things happening 20 years later. on one hand it makes me feel good that i'm not "the only one", but on the other hand, i also see that i had it relatively easy. to those of you who didn't...congratulations for making it this far and keeping your chin up so to speak.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •