surgery at 13, now in my 40's what to expect? [Archive] - National Scoliosis Foundation Forums

swilkers

01-04-2005, 09:22 PM

Debbie I am 38 had surgery around oh 26 years ago... harrington rods too... and yeah a bit of tiny issues in lower back - but honestly... no issues ever - any issue now i believe is because i have gained some extra baggage and need to get my butt in shape again.... also, i have recently thought after reading online "stuff" because of my daughter being diagonosed a few weeks ago... maybe just maybe i shouldn't not ride all the rollor coasters i ride every year... seems these darned rods sometimes don't hold out! any way.... with my daughter being diagnosed i have been forced to reconize what i always have just not even thougth about you know... I have freakin rods On my spine!!! I never really thought about until recently- what age and time woudl do - i suppose it shall be interesting - one good thing my daughter is going to the same surgeon I went to and he's awesome - trust me.... when we go back for her one month follow up after bracing i not only have aliswt of questions about her but me too! Wow ... unreal to realize the scope of folks this affects you know? I just always went with the flow and never thought much about it if ever thought about my very odd back :) any way will be fun to chat with someone who's is my age and has same thing i do

darrell

01-05-2005, 03:45 AM

Hi Debbie and Swilkers,
Debbie I posted a very similar message yesterday (I think) and what you have both describe sounds familiar to me. Apart from
the year/eighteens months of my surgery and post-op braces the
only "problems" I've had are those of body image - and now I look back and laugh at myself at how much time I wasted and opportunities I missed because I thought I had an "ugly" secret.
Debbie I have noticed changes over the past several years - what I call mechanical problems relating to posture, especially seated. As work has become more sedentary it has become more of a problem. Although I don't think of myself as having pain, I am uncomfortable nearly all the time, which is driving me nuts. I'm now considering Alexander Technique as a way of maintaining/improving mobility and the postural mechanics of a body that is, or at least has been very flexible coupled with a spine that is severely non-flexible.
My surgery was 33 years ago (aged 15) Harrington Rod & spinal fusion, in Hobart, Tasmania, Australia. After looking over this site I think I have flat back syndrome which has freaked me out a little after years of not particularly thinking about scoliosis.

sins

01-05-2005, 11:28 AM

Hi all,
I'm 37 and had my surgery in 1983.I had a fusion without rods from T3 to L1.I too find increasing stiffness and lack of flexibility a problem.Maybe I'm expecting too much of myself and maybe it's not so unusual to feel my body slowing and stiffening as I approach my forties.I don't have severe pain or flatback and I consulted two specialists over the last year. I have disc degeneration and bone spurs in the Lumbar spine but no severe symptoms. He told me that what I was experiencing was not unusual and he jokingly told me I was middle aged.:D (At least I hope he was joking):p
The advice he gave me was to join a gym and keep fit, but as I've
worked in a sedentary job and have two small children this is practically impossible.
Sins

swilkers

01-05-2005, 08:40 PM

Hey Darrell. - wow i can't belive that after all the years of like never ever thinking about it... It is so at the front of my mind - i always just well never really thought anything about it - till now... flat back syndrome - first i have heard - recently my lower back has bothered me .. but to tell the truth i thought it was becuase of my daughter having and me thinking about it - reason being my back never bothered me ever unless i was talking about it or listening about some one with back issues - seemed like mine got tight i know all in my head! But seriously - I think the lower back - not really pain just annoyance is due to job change sitting all the time and weight gain... I think I just need to do something to loose a tiny bit of weight not even a lot and get more physical you know? I am maybe just now at 38 coming to terms (not because i want to...just cuz my little girl has it) with what i went through for years - and the surgery and the fact I have like a couple freakin rods in my back - wow... talk about denial ! It's really cool for me to start just a day ago to people - and realize that it's so ok and I can talk about it you know? Thanks for the response

Francine

01-19-2005, 08:05 AM

I too have not thought about my scoliosis for 30 years more or less. I never dreamed that later in life I would run into problems with pain and disc degeneration. I had my Harrington rod put in in 1974 in Ottawa, Canada by Dr. Gordon Armstrong. I was 14 so I don't even remember the degree of curvature but it was mild to moderate. It's hard to find anyone even in the medical community who has any knowledge of what to do with someone like me. I'm gone to a physiotherapist, chiropractor and now a physiatrist (not to be confused with a psychiatrist although I need one of those eventually!) The orthopedic surgeon says that the surgery he could do to help me has a difficult long recovery time which is not warranted at this time. In the meantime I am looking for coping strategies. Anyone have any ideas?

swilkers

01-20-2005, 08:24 PM

Hi Francine... My dr. and now my daughters... Dr. Alfred kahn III is wonderful and just in the past few weeks preformed a new surgery the only one in the country for degenerative disk (forgive my spelling!). Perhaps this is someone you should speak to.... He is and always has been in the "spine" b usiness and trained with one of the best... Just a thought...Let me know if you want more info :) h

Francine

01-21-2005, 07:21 AM

I'm in Canada and need to stick with Canadian health care system. Also, now that I'm finding out how badly others are suffering, I realize my back and hip pain is relatively minor at this stage. Thank you so much for the help and concern.

Judy Cayabyab

01-21-2005, 10:33 AM

Hi Debbie,
I was wondering if you could share with me how you are able to stay fit? For me, it has been a very long and bumpy roller coaster ride, especially after having 2 children (now ages 4 and 6). I just turned 30 and I am so uncomfortable and I know if I could just get more fit I would feel better. I'm 5'1 and 135 pounds. My goal is to lose fat, gain lean muscle and weigh 125 pounds. The problem is it hurts to work out. I have hip pain on my right side(I believe this is from the curvature of my spine). I also have knee pain and heal pain so I recently stopped running 2 to 3 miles every other day. I've just taken up walking on an incline trainer, but I really miss running. I was trying to get in shape and enter some races, just for motivation and sport, but I quit because of the pain. I am a mess. I feel double my age and it's really depressing, especially when I am self motivated to stay fit. Do you have any suggestions?

Thanks,
Judy

Debbie Serdy

01-21-2005, 06:51 PM

Dear Judy,
I have a couple suggestions. I go to a chiropractor every 2 weeks and that really helps me. I also am a Reiki Master and give and recieve Reiki treatments regularly, that really helps me too. As for exercise running is the worst thing you can do for your body and back, very jarring on your joints. Yoga would be awesome. It helps with your flexibility, massages all your inner organs, and really tones your muscles and burns calories. I hope some of this info is helpful
Debbie

Judy Cayabyab

01-24-2005, 10:43 AM

Hi Debbie,

I will definitely include more yoga and stretching into my workouts, as well as find an alternate to running for aerobic exercise. If things do not improve I will consider seeing a chiropracter. Reiki sounds very interesting...something else to consider in the future. Thanks so much for your advise!

Judy

kim1962

04-02-2005, 04:58 PM

Mary Lou

04-03-2005, 07:13 AM

Hi Kim,

Sorry, this has nothing to do with your actual post, but where is Yardley,PA? I have lived in PA all my life and I'm sorry to say I've never heard of Yardley.

Mary Lou

mereana.marster

04-14-2005, 02:08 AM

[QUOTE=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.[/QUOTE=Mereana]Sometimes when I would lie on my left side that leg would always go numb, no trouble with my right side. My physiotherapist would find the trigger points to relieve the symptom until unknown to me how I cause it to come back. Sleeping positions are trial and error and once in a blue moon we can wake up in no pain and suprised we'd actually been to sleep. When my legs feel weak rest seems the only relief I've tried walking upstairs because medical advice is too keep walking, I found the more I walked the less I could move so after a rest which could be 2 days bed rest not all day spent in bed but more than usual, my legs are better. I think with scoliosis we need to recuperate and with normal people they need to keep on going. We need to recuperate to keep on going, to pace ourselves and do relaxing things like massage. We would be our best advisors I have also been to doctor to doctor, therapist to therapist. When you find the right one stick to them otherwise you waste alot of time and money and in my situation degenerated my body function by doing normal things that are not for scoliosis people. :confused:

Nancy B.

04-27-2005, 09:50 PM

Hi,
This Is My First Time To This Site. I Was Diagnosed With Scoliosis When I Was 3 1/2 Yrs Old. I Wore A Milwalkie (spelling) Until Age 12. At That Point They Thought It Was Time For Surgery. I Went Through The Worst Experience In My Life. I Had The Surgery, Then Had To Be Flat On My Back For 4 Months In A Body Cast. Not Allowed To Get Up @ All. Then Had A Body Cast For Another 6 Months Afterwards. But Was Allowed To Walk Around After That. It Was In The Dead Of The Summer, & Quite Honestly Not Being Allowed To Shower, I Smelled. (yuck). Then The Happiest Time Had Arrived & No More Casts Or Brace. (in A Cast For A Total Of 10 Months. Brace For 9 Yrs), I Was 12 Yrs Old At The Time & Now 42. I Did Not Have Any Pain For Almost That Whole Time. But Last Year, I Had Terrible Pain In My Lower Back ,& Pain Running Down My Leg. Very Hard For Me To Walk. Sitting Was Fine. I Did Finally Agree To Have An Mri & Was Told Spinal Stenosis Was The Diagnosis. & It Was Very Common For Some One With Fusion To Have It. The Ortho Wanted Me To Have Cortisone Shots Which I Would Not Agree To. I Told Him I Wanted To Try Physical Therapy. & Was Told By The Physical Therapist, He May Not Be Able To Help Me, I Told Him I Was Going To Make It Work. First He Had Me Doing Exercises Which Made Me Feel Worse. He Then Switched To Deep Massages & Stretching Me. & With In Weeks I Was A New Person & 1 Yr Later, Still Feeling Good. I Hope That Things Keep Up.
Nancy

Allison

05-18-2005, 01:40 PM

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.

sonia

05-23-2005, 08:00 PM

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

Alohajulie

05-27-2005, 05:35 PM

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.

LHM

06-09-2005, 03:22 PM

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!!!

LindaRacine

06-09-2005, 03:36 PM

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

LHM

06-09-2005, 05:00 PM

Oh lord! that's what I was afraid of. Thanks! So the chronic aching isn't due to the Scolio?

d_ann

06-09-2005, 07:58 PM

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. :)

LindaRacine

06-09-2005, 11:09 PM

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

sweetness514

06-10-2005, 12:44 PM

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 :cool:

LHM

06-10-2005, 01:17 PM

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!!!

sweetness514

06-10-2005, 01:44 PM

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.

LHM

06-10-2005, 02:39 PM

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! :)

LindaRacine

06-10-2005, 09:07 PM

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

sweetness514

06-11-2005, 12:42 PM

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.

LHM

06-12-2005, 05:16 AM

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. ;)

solg

06-13-2005, 01:38 PM

I'm new here...what is flat back?

cammaltby

06-14-2005, 10:10 AM

also known as iatrogenic flatback syndrome or fixed sagittal imbalance and is the progressive loss of lumbar lordosis, i.e., "flattening" of the lower spine's normal outward curvature. Most individuals with it underwent posterior spinal fusion some time between 1960 and 1990, and usually had Harrington rod installed low in the lumbar spine. Flatback can also develop after lumbar surgery for other reasons. Signs/symptoms often include forward-leaning or hunched-over posture; need for physical support (shopping cart, walker); standing with knees slightly bent in order to stand upright, compensatory hyperextension (craning) of neck; inability to lie flat. Pain and disability may be progressive over time as the discs below the fusion wear and stenosis and other arthritic type changes occur in concert with the forward leaning posture.

The "cure" is a complex revision surgery, where wedge shaped pieces of the old fusion are removed to re-align the spine/body, new hardware is added, and fusion is often to the sacrum.

Hope this helps..hope it doesn't apply to you! Cam

always smilin'

04-21-2006, 09:25 AM

I'm 34 and new here...I had my harrington rod inserted when I was 12 (s-curve; 70 degree curve). I have had excruciating pain this last month...all the way down my right arm and back. Like most of you, I never even gave my back a second thought until recently...have been active and am in relatively good shape...but this last month has been horrible. I've been to a physical therapist (which exasperated the problem) and a chiropractor (who is no longer treating me as she thinks I have disc degeneration and is afraid that if I don't get treated soon I will have permanent nerve damage). My general physician gave me pain meds that I cannot tolerate...I go back to my primary physician on Monday. I also was afraid of chiropractic but she was very professional and gentle. Deep muscle massage also pained the area more. I also notice lower back pain when I sit on a hard floor (I'm a teacher and mom:) )and try to get up or if I'm in cold or wet weather...never gave it a second thought but am now wondering if I shouldn't have lower discs checked as well. Wow! I thought I should be home free after all I went through in my younger years.

LindaRacine

04-21-2006, 10:50 AM

Hi Always...

I'd like to encourage you to ask for a referral to a scoliosis specialist. You can find a list of specialists here:

http://www.srs.org/directory/directory.asp

Regards,
Linda

always smilin'

04-24-2006, 12:52 PM

Linda-

Thank you for that connection...I have written to my spine surgeon with no response at this time...do you think it would be appropriate for me to make an appointment with him...I see he's on your list...he normally treats adolescent or juvenille...met with my primary physician today...have an MRI scan planned for tomorrow...he does want me to get a second opinion.

Thanks so much...this site is truly a Godsend!

LindaRacine

04-24-2006, 12:59 PM

Hi Always...

I'm guessing that the MRI will be relatively useless. The metal attached to your spine will distort the image, so they won't really be able to tell anything unless the problem is relatively far from the implants.

If your surgeon treats kids, you're going to need referral to someone who treats adults... hopefully someone who has a lot of experience treating patients with prior fusions. Where are you located?

Regards,
Linda