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Posted in: Scoliosis, and Surgery.

Progressing Adult Scoliosis

Started by LM on 01/23/2010 8:36pm

I am a 53 year old female whose scoliosis has progressed from@ 30 mid-back curve to @ 50 degrees in the past 5 years. During the 3 years previous to my curve changing, I was being treated for hyperthyroidism (Graves disease, which has been in remission for 3 years now) and going through menopause. I had returned to college, and spent a lot of time sitting during those years, also. Before that, I bore 5 children, including a set of twins, and waitressed for 25 years. the doctor thinks that these were all contributing factors for the change in my curve, but no one knows for sure. My mother has scoliosis, and had 5 children, also, but her curve has remained at @ 30 degrees. My doctor thinks that I will need surgery, with two steel rods along the sides of my spine, and bone grafts, with a 3 month recovery period, to stabilize my spine. Presently, I have been going to the chiropractor to manage the pain, but I am very crooked. I have a doctor's appt. in April to see if my curve is still progressing. Does anyone out there have a similar story? Has anyone had this sort of surgery, and was it successful, or do they wish that they had not had the surgery, and learned to live with the disfigurement and manage the pain?

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Hi! I am new to this board as I was just told I have scoliosis. I am so confused about this condition, so I ordered some books about it based on a recommendation I read in a discussion on another site, Will let everyone know if they are any good.
I have a 30 degree curve and was told surgery is not an option now.I am 58 and overweight, so maybe the doctor wants no part of operating on me!!! All I know, is that I want to feel better. I am so tired of having leg pain. I see an accupuncturist and that has helped a lot. I want to continue to drop weight as the doctor said that will definately help. The operation seems pretty serious and I think the longer one can hold off the better. Whats this laser surgery all about?
A 50 degree curve isn't that bad. My doctor told me a person should be at 70 or more before operating is a recommendation. I live in NY near NYC and we have some pretty good doctors here. I think you will be ok and please do not worry and stress yourself. Write back!

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1st, I feel your pain; it's hard enough enduring back pain, but working on your feet, going to school, raising children, most people have no idea the pain we are in. I am 47; I was diagnosed with double scoliosis in 1979 - my curves were 74/72 - ridiculous. My 1st surgery in high school was the Harrington Rod Fusion. Lengthy hospital stay, wore back cast for 6 mths. Still suffered but never really let it stop me. They were able to reduce my curve to 50/44. The pain started all over again. I've had 3 spinal fusions since 2002. Nov 206 my last. This time surgeon inserted metal cages in between discs, took stem cell and bone graph from my thigh and inserted in between discs. Lengthy recovery and hurt like heck, but for the last 2 yrs, my whole life changed for the better. I started aqua classes at the Y, worked up to the Elliptical, walking on the treadmill, changed to a healthy diet, life was good. Overnight, since Dec. 8, I began having extreme back pain and spasms that last over an hr. I kept working, then finally couldn't walk or stand and have been on disability since Jan 7. It is non stop dr's appts, MRI, CT, had my 1st epidural steroid injection yesterday and have 2 more scheduled 1 wk apart. I am on very strong meds and nothing helps. It's getting into to see the specialists that is the hardest; I am frustrated, feeling worse, and my job is giving me a hard time and I have to convert to Cobra which is going to bankrupt me. My advice is to find an ortho surgeon who you trust and have the fusion. Your pain will only get worse. It's an awful surgery, but for a time I did so well. Now, I'm going through it again. Ice seems to work best for spasms and I sleep on a heating pad. If you know of any other suggestions, I'd love to hear them. Good luck. I have a supportive family and friends, but they are even getting tired of me. They sympathize with me, but empathy, unless you have experienced the pain, they have no clue. Take care.

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Hello LM
I am sixy year old man with severe scoliosis. I have only had it for 6 months. I havent a clue
where it came from. It was very fast and it quickly became very difficult live with. I am bent
right over and while on my feet I am pretty much in constant and fairly severe pain.
My GP has has me on a pain management program which includes a fair amount of narcotics
every day. Without them I could not function.

I have had the worst luck with treatment. I have consulted five different specialist only to be more
or less turned away and passd on to another doctor. I am told that while I have some disc deterioration and spinal stenosis it is not extreme for my age. In short not one of these guys has been able to tell what I really have wrong with me or what should be done. I have just finised
a complete examination by yet another surgeon. I had 3 MRIs a radio active bone scan, CT scans
and Xrays. He says that he can see the seriousness of the scoliosis but say they do not think it
can be fixed with surgery. I am not suppose to see a neurologist. I dont know what good that
will do. I suppose there may be some kind of muscle condition that he may determine.

I guess I am really not providing you with any information that will help or that to pass on
a good word to you and wish you success. I do know how it feels to be twisted and look terrible
People no longer recognize me. I used to stand straight and tall and looked heathly. Now in
six short months I have become a twisted up old man.

We have a world class spinal facility here. It is reputed to be one of the best in the world
I have cluded a new clip from our local news station that shows a brand new treatment that
they have just began using at the Bullson Spiinal Clinic. Follow the link. The first article is
on fat, but the second one is on scoliosis. It looks to be almost a miracle.
I have been trying to get treated at this clinic for six months. I am told that the waiting list is
six months. Maybe I will get in another six months. It is an enormous facilty about the size
of a medium metro hospital. It is entirely devoted to spinal problems Problem is in
Canada while all treatment is free you have wait your turn. I am sure that this treatment
that I might get there would be in the six figures, but if it was in the US I could pay and get
it right away. Here you cant pay even if you want. If your an American I would be very careful
about breaking up your medical system . OUrs is univeral . free for everyone. I works great
as you can always see a doctor and if you have something life threating you are immediately
treated. If you have some thing serious by not life threatening you got a problem as the most
sick are always treated first.

I am simply rambling on about not much of anything that can help you, so I will let you
go . I am feeling fairly sorry for myself these days and it helps to write to someone who
is going through the same difficulties. I wish the best of luck

Where are you from. I am from Victoria British Columbia.

Best regards'
John Gidden

I forgot the link

Go to this link: http://www.ctvbc.ctv.ca/drrhonda/
Then click on the story that starts with “Pear Shaped” the Scoliosis report is on this date.

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This sounds familiar. I am 54 years old. My scoliosis has progressed to 50 degrees in the past two years. I've had a much lesser degree that was stable since teens. I am very active and have been doing nothing different. I do not know why this happened all of a sudden, and so quickly. Fortunately my pain is still mild and my posture is still good. However, I have been told it will deteriorate, and something will have to be done. I do not know what yet. I am so frustrated. Presently I see a physical therapist 3 times a week and we are working on flexibility, posture, strengthening, etc., to see if the progression can be stopped or slowed, and maybe the inevitable complications prevented.

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Yes, as I posted in my 1st topic the other day, my 1st surgery for 76/74 degree scoliosis was a Harrington Fusion when I was in high school. Since then, I had 3 surgeries from 2002-2006. In 2006 I had a top to bottom fusion, bone graph, screws, rods. That surgery was horrible and a lengthy recovery, but for 2 yrs I was doing great. Now overnight since Dec, I'm in constant pain with spasms that last up to 2 hrs, cannot stand, or if I do for 5 minutes, am in serious pain for hrs, been placed on disability, and pain meds do not affect me. I had an epidural steroid injection last week and am scheduled for 2 more this month. Had my MRI/CT - the biggest obstacle I am facing is getting in to see the surgeon who performed my surgery. I've been googling advanced adult scoliosis and it seems that even since 2006, there are many new treatments less invasive than the spinal fusion. I suggest you seek out 2nd and 3rd opinions from drs and get treatment. Your pain will only worsen. I considered my 2006 fusion a success, until now. Hope this helps.

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John in Victoria,

I am in Seattle. You said you would not be allowed to pay to have the operation done in CA. quickly, you have to wait your turn. But you can pay to have it done in the US and if your have your tests done, probably rather fast.
I just had stenosis surgery at Swedish Hospital in Seattle. If I can be of any help, let me know.

Donna

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I am a 57 year old female. I have had scoliosis since I was in high school. My curve went from 30 degrees to 60 degrees about the time I turned 50. Drs. did not want to do surgery at that time. Three years ago at 54 I was in so much pain I didn't think I could work much longer. I found a place called Spine Cor and did some research on their bracing technique. With this brace my curve is down to 60 dregrees and I hardly ever have any pain. In fact I haven't had pain meds in a long time. I am still working which I am certain without this treatment I would not be able to do. I hope this helps.

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Hi my mum is 63 and has just been diagnosed as having scoliosis by the chiropractor yesterday, she has been visiting the GP for a year and has been referred for a back xray after just having a pelvic one done, but this could take up to four months. My mum's back is so bad she can hardly walk and gets uncomfortable sitting for too long. Will seeing a chiropractor help whilst mum waits for an xray, really not sure of the best way to advise her. She is in so much pain and its so upsetting.

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Hi, I'm new to this board. I was told at 12 yrs old that I had scoliosis, was treated with a brace & exercuses for a year before finding out that this was the wrong treatment. Another Dr prescribed the Milwaulki Brace which I wore for about 4 yrs. I've been married 36 yrs, had 2 children with no problem. My curve has worsened over the years, now T is at 109. Having breathing problems as one lung is restricted from expanding fully, have COPD (never smoked), and sleep apnea and am on a bi-pap machine with 2% oxygen at night. I don't recall having pain before bracing or after until about a year ago - lower back is painful - probably arthritus is setting in too. And I also have a double curve, top and bottom. I have seen a Dr. over the past years who tells me I should have spinal surgery with fusion of rods. X-rays have been taken and waiting for his go ahead for surgery. I've put surgery off for so many years but don't think I can any longer. I can still move about and carry on normal chores until back begins to hurt. I also had minor knee surgery for torn ligiments and other knee hurts from arthritus. I'm also diabetic 2 (no insulin just medication). Does anyone have advice for me including surgery, recouperation and how their life has changed (good and bad) from surgery. I will be turning 60 shortly.

Thank you.

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Hi, I also am 53 year old female. Diagnosed with scoliosis about the same time as menopause. It does run in my family. I noticed my left chest was protruding and thought I had cancer, the Dr. took a chest x-ray said I had scoliosis, patted me on the head, and sent me home. A back x-ray was never done and I do not know the severity but feel it is mild. However, I do have pain, mainly at night. I can only be on my left side for a short time before the pain wakes me. My walk is off and I have intermittent hip pain. I am considering being fitted for the flexible spine cor brace, It is very expensive but feel it would be worth it if it can stop the progression of the curve and or help with the pain. I actually have more of a rotation than a curve. I will let you know if it helps.

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I was diagnosed with sciolosis at 14. Although in physicial therapy with chiro for past 20 years, I have managed to live a very active life. I am now 68 and have a 70 degree curve. The real degeneration started when I turn 60. My back is really crooked and I now experience a lot of pain and have extreme difficulty standing up in the morning until I get into a hot shower. Go to the gym to swim 7 days a week. It is great for strengthening legs and stomach. The limitations of degenerative sciolosis are catching up with me - driving for more then 45 minutes is painful. Am scheduled to have a new spinal surgery with Dr. Lionel Hunt at Cedars next month where they clean out the disks and replace with spacers. I will need to take 4-6 weeks off of work. I have a Spine Cor brace - the problem is the minute you take the brace off gravity pulls the back to where it was before you put the brace on and the pain starts all over again. Bracing is really meant for teens and for pain control in adults - it cannot really move anything structurally at an older age. For many years I used Advil to control the pain but can no longer take due to stomach problems. Try dealing with painful sciolosis with no over the counter or other pain meds. It is a real challenge. The swimming and steam room daily really help.

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There are a few things for you to consider.
1..your curve is definitely progressing. The best literature and experience would strongly support that once a curve of your magnitude (50 degrees) has started to progress, it will continue to get worse with great predictability. It is much easier to fix when you are in your 50's then compared to trying to fix it at 62, 65, 70 years old.
2...your balance. If your shoulders and head are reasonably balanced over your pelvis and you can walk in an upright and balanced position, you have a little more leeway, and your curve will be a little more "forgiving" than a curve that is imbalanced (shoulders and head are being offset to the front or to the side or both as relative to your pelvis when you are standing upright). If you are becoming more and more imbalanced as your curve has been progressing, you should really consider having surgery for this problem, and consider it sooner rather than later while your general health are most supportive of your recovery.
3...the magnitude of your curve. 50 degrees is the "real deal" if the other factors above are considered as well. However, progression of a curve and overall spinal balance are definitely more important than the static measure (ie 50 degrees). In general, surgery is certainly a reasonable general consideration for a patient with a curve that has documented progression, is becoming imbalanced, and is now at 50 degrees. I think your doctor is giving you good feedback, by what you have expressed above.
2nd opinions for big procedures always make sense..even if just for additional perspective. It would necessarily need to be with a fellowship-trained spinal surgeon with interest and experience in adult scoliosis. Only a minority of orthopaedic and neurosurgical spinal surgeons have this kind of expertise, so you'll likely need to do some homework. You might even ask your present surgeon if you're comfortable, expressing that you are comfortable with him and want to proceed, but just want some additional perspective before proceeding with surgery and ask him who he might suggest if he couldnt do it himself. Totally a fair request.
Surgery for this problem is complex and quite demanding for patients and is best performed by a fellowship-trained spine surgeon with dedicated interest in adult deformity/scoliosis. That said, it works with great predictability in the hands of an experienced spinal surgeon with background and interest in adult scoliosis.
Once you decide that surgery is for you, there are some other things to consider to best prepare. Have your regualr doctor check a DEXA bone density scan to make sure your bone density is as good as possible; if you have osteoporosis or osteopenia, there are agents (like Forteo) that should be considered to both improve your bone density before surgery, and to potentially accelerate your bone healing after scoliosis surgery. It sometimes also changes surgical strategy and techniques.
Also many people ask if there is a role for a nutrition or vitamin regimen to support best recovery after scoliosis surgery. There is absolutely a role, with abundant literature showing more rapid and higher quality healing and outcomes, and decreased complications with the right combination of vitamins and minerals. There are a handful or dedicated surgery recovery products available, though the best I've seen so far is SurgiKit-Bone&Joint. It's expensive, but definitely top-tier for those interested in really optimizing nutrient support of tissue repair and recovery. Available atwww.topdoctorschoice.com Worth a look. I'm sure you'll do great...keep asking questions a the more you know, the better you'll do!

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Hi all, after reading Westy123 post, I have a few questions.
1. Does surgery stop the progression of the curve forever?
2. Why does the pain return for some who have surgery when it is relieved initially?
3. Does the flexiable spine cor brace stop the progression of the curve?
4, Can arthritis develop because of the scoliosis?

God bless you Calee (the post from the 16 year old) for caring about your mom, I'm afraid we are all lookiing for the same thing. Relief of pain and how to stop the the progression of the curve in the least invasive way.

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This is mainly for Bpatient - I am a 41 year old male and have the same issue - mostly rotational scoliosis. I got it almost overnight when I was 24 - first noticed a pain in my sternum and then the left side of my chest popped out a bit and the right sunk. It progressed off and on until I was a little over 30 then stopped, and just last week took a big turn (pun intended) for the worse. Laying on the left side of my chest is extremely difficult. I have pain throughout my rib cage now (where before I only felt it in my chest). I stretch, exercise - do whatever I can but it keeps getting worse... I'm curious to now how that brace helps you. Please post what you think of it.

I'm so concsious of how bad this thing can be and so am grateful that I am relatively "okay" right now, but this sucks, people. All these cases of scoliosis and so many people are told that nothing can be done and get sent on their way... in this day and age. If a bone can move one way all on it's own, why is it that it can't move back? Why is it that we can do so many great things with the body but seem to know nothing about this? It just doesn't seem like it should be so difficult to figure out... *sigh* just venting I guess... thanks

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Hello, I am 36yrs old and had a Harrington Road put in when I was 10yrs old.. I have led a really normal life since then , not much pain etc - i did dance and dictors said I had very good posture and were shocked i was still so flexible. Now , however, I have had 2 children at 25 & 29yrs and although that when well I have been slowly getting more pain- I just seem to live with it and not notice it that much , friends say are you ok - you are walking funny and sometimes get out of breath - thats when i think oh yes my backs hurting a bit.
I had not seen a surgeon or been back to the Hospital sicnce I was 16yrs and last year I was feeling in lot of pain daily so went to a surgeon at addenbrokes . The surgeon said my back was curving again and it was bad He was surprised I could even walk in as well as I did. I was told surgery was an option but was advised to wait as long as I could bare the pain.. as the operation will not stop all the pain and then will go on to cause other problems and further surgery. I now am just 36yrs and feel like an old person.. I have to do housework in stages and everyday tasks are so hard.. I pretend to be normal but feel so useless now as i always had so much flexibility and outgoingness.. I am really trying not to go for surgery option as they talked about bone graphs too .. what have you decided to do.. ?

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I am 39 years old and commute about three hours a day for work. I wore a brace for ten years but given no information as to what to look forward to or any follow up. I have been dealing with upper and lower back pain for years, but it has been getting worse the last few months. I have seen spine specialists, physical therapist and recently a pain management doctor who doesn't know why my back would hurt.
I have about a 45 top curve, 40 bottom curve. Osteopenia. My hip has been hurting. They say surgery is not an option but if I hear one more doctor say that there is nothing they can do, I don't know what.
Try to keep positive. Hope my wonderful hubby won't get too tired of hearing how much everything hurts.
How are we supposed to function and work everyday when it always ends up hurting. I've also been to the pat you on the head, sorry and I can understand that it hurts, but there is just nothing we can do.
So what do I do before it gets too bad? How do I commute three hours and sit for eight.
If you go on the internet, all its about is young children. We grow up... does anyone know what to do with us now?
Sorry to hear that there are so many, but nice to know I'm not the only one.

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I am a 20 year old female. My scoliosis is only 37 degree's but I've only had it for 4 years. My entire life I was active. I was a cheerleader gymnast and played ultimate frisby. But I had to give it up because of this. I then went to school for nuring but had to give that up too. In less than a year my spine has degenerated 10 degrees. Because of my age and the rapid progression I have elected for the surgery. I have done mastage therapy, chiropractors, physio and nothing has helped. I cry myself to sleep every night because of the pain. I'm scared for the surgery but I can't live my life like this anymore. I have become incredibly self conscious of my body I refuse to wear a bikini and wear baguy shirts. People can't understand this because I only weigh 108 pounds but my body is so distorted. The disease has also caused me to have incredably low blood pressure, often 60/45 which causes me to have seizures. My surgerm won't be for moths though does anyone know how to manage the pain I cant use drugs because of my BP. I can't do it anymore.

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Having been adopted, I've since learned scoliosis is hereditary... I'm scared cuz its gone from 52° to 70° in just 3 yrs

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I've noticed other women in my age group (I'm 55) have experienced worsening Scoliosis. I truly believe menopause has a lot to do with it (postmenopausal as of Sept. 2014). During that time I've gone from a 52° -> 72° "Cobb" Lumbar Curvature + a Moderate -> Severe Lumbar Roatation. I also have several herniated discs from L-1 -> S-1, DDD, Stenosis, etc...
In early March, 2015 my Pain Mgmt Dr of the past 8 yrs, "made" me try Caudel Injections (Lumbar ones didn't help in 2008 or 2010). I say "made" me because he said he'd reduce my meds (MsContin 60mg + Opana for BT) if I failed to show up for them. I understand the DEA is coming down on Pain Clinics, but after 8 years of compliancy, & paying my bills on time, I'd appreciate a bit of respect!
After late March's 1st Injection numbness wore off, I couldn't lie down, sit, walk, etc w/o a pain level of 8-10. It felt like late labor pains w/o a good outcome (I had 2 natural births in 1983 & '88).
I told my Pain Dr @ it + my hesitancy to continue with the next 2. His reply was, Oh, that's normal; by the time your 3rd injection is done, you'll be a new woman!" I was never warned of the possible side effects beforehand, but had no positive outcomes previously.
Injection #2 was administered on April 14th. I was given extra sedation (probably to pacify me until I got home) this time. After a 2 hr nap, all numbness had worn off & I spent the following 10 days at pain levels 7-10, never knowing when it'd spike.
I'll be going back to Cleveland Clinic next week for the 3rd time. They didn't suggest surgery (would have to be L-2 to Sacrum + with a spine of a woman in their early 80's) back in 2010.
I wish everyone the best!

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