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octaviawood

Searching for Adults living with scoliosis, thoracic stenosis

Posted by @octaviawood in Bones, Joints & Muscles, Sep 13, 2012

Searching for Adults living with scoliosis, thoracic stenosis

kaylynrenae16

Posted by @kaylynrenae16, May 7, 2013

I was diagnosed with scoliosis around 4 months ago. I have a 40 degree "s" curve. I was sent to a specialist about it and basically all he said was that I had to wait and come back in 6 months. That was 3 months ago and I've been experiencing back pain daily and didn't know if that was because or just regular scoliosis pains or the curvature getting worse. Any advice?

annitta

Posted by @annitta, Jun 4, 2013

I was diagnosed 14 months ago at the age of 62. The exam came about because my pain level was more than I could bare every day. One x-ray of the chest found the scoliosis and the doctor simply skimmed over it and said here is an n-said pain reliever and I will see you in 3 months and walked out of the room. I went to another doctor, after a neck and lumbar x-ray I was sent to physical therapy, too late, can't touch me the neck pain is to severe. I went back to my family doctor who has known me for 20 years and my track record of no complaints and no medications who pretty much said I will give you the pain meds you require but you will have to be very careful. That is where I am today, trying to learn what I can about this ugly monster that has affected everyday of my life and I had no idea that not everybody lives with the pain I have had, I thought I was supposed to deal with the headaches and leg and back pain that barely allows me to walk from one room to another after getting out of bed in the morning. I help myself by limiting certain activities that I now know I should not do and would not have done in my lifetime if I had known what I know now, but that is to late so I want you to know that the doctor has no clue what your pain is, she has more concern with the fact that you may ask for a pain killer that will work like vicodin. The n-said is a joke. I refuse to put that in my body. If you have high blood pressure which I never had until I was 61 (caused by the enlarged heart) you should not take these but my first doctor handed me two prescriptions before leaving the room. Lisinopril for high blood pressure and an n-said for the pain. Go figure. So do your research on the pain and I would say from experience that if you are continuing to live life the same as before your diagnosis yes it is getting worse because you need to know what your physical limitations are now and they are not what they were before. Sit down more you are entitled. Good luck!!

amberpep

Posted by @amberpep, Sat, Oct 29 at 6:23pm CST

Hi there .... My daughter, who is now 45, was diagnosed with an S curve scoliosis when she was 9. Our Orthopedist at the time had a Physical Therapist working for him, from Germany, who was absolutely wonderful. We went in every month and she would give my daughter another exercise to do 2x a day ... within a few years she had a series of 12 different exercises to do twice a day. They were to strengthen her abdominal muscles and core muscles to hold the S from getting any worse, thus making her have to have the Herrington Rods. Well, God bless my daughter and that P.T. because while Jen still has the S scoliosis, it never got any worse ... she's gone on to have 2 children, and from the front, you'd never know she had this deformity.
Perhaps strengthening your core, very faithfully (I sat with her every time), would prevent it from getting worse. Good luck.
abby

aeb1957

Posted by @aeb1957, Fri, Mar 4 at 10:24pm CST

Adult scoliosis

colleenyoung

Posted by @colleenyoung, Sat, Mar 5 at 11:46am CST

Hi @aeb1957 and welcome to Connect.
Your message is very brief. Can you tell us a bit more about you? Then I can help connect you to people and conversations, like @annieecruz @mieke for example who also live with scoliosis.

In the meantime, I thought this Mayo Clinic Q and A would be of interest. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-for-adults-affected-by-scoliosis-treatment-based-on-severity-of-symptoms/ It talks about adults with scoliosis, and treatment based on severity of symptoms. @aeb1957 @annieecruz @mieke how do you manage your scoliosis?

mieke

Posted by @mieke, Wed, Jul 13 at 9:56am CST

Thanks for the link, Colleen! Is there a way to conect with adult patients that had a spinal fusion?

mieke

Posted by @mieke, Wed, Jul 13 at 10:01am CST

I try to manage my severe scoliosis with manual therapy twice a week. Sometimes (often) manipulations do more harm then good. The root of the pain is often in my pelvis due tot hypermobility and the therapist often tries to loosen up a rib or vertebra, that is a result of the imbalance in the pelvis. Treating triggerpoints in muscles is working the best, the spine then finds it's own way to loosen up and finds it balance again. I'm taking supplements for the bones too, 5000 mg of vit. D3, manganese, magnesium and Biosil. Also I take LDN. I do a light form of yoga and Chi Neng qi gong for power, stretching and relaxation.

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lisafl

Posted by @lisafl, Fri, Jul 29 at 2:34pm CST

You may want to look into and consider being evaluated for connective tissue disorder (Like Ehlers Danlos or Marfan's,etc) due to clues such as hypermobility, scoliosis, vit D deficiency, headaches. My scoliosis isn't too bad, but my ribs don't stay in place and muscle imbalance follows. PT has been helpful for me also, especially manual therapy and exercise to strengthen weakened area. My pelvis is an issue too. Also, heat and sometimes ice helps some. (I have Ehers Danlos Syndrome).

colleenyoung

Posted by @colleenyoung, Sat, Jul 30 at 7:08pm CST

Welcome to Connect @lisafl. We look forward to getting to know more about you. When were you diagnosed with Ehlers-Danlos Syndrome? What is your biggest challenge?

lisafl

Posted by @lisafl, Sun, Jul 31 at 9:35am CST

Hi, I was diagnosed in 2008 along with my son who was 22. We realized my mom, who passed away at age 51 had also had it. Although my issues were lifelong, sprains, ribs out of place, easy bruising, bad proprioception (walking into things), stretchy skin, etc, I was called double jointed and didn't think too much of it. My son had pectus excavatum surgery at age 6 and was very hypermobile and also has IBS and headache issues. He was referred to genetics where Marfan's was considered (he's 6'7" tall). I was being seen in Rheumatology at the same time and we figured out we had EDS by looking at all the symptoms.
My biggest issues now are instability at C1/C2 causing chronic migraines and neck pain. An auto accident didn't help. Also, I have major issues with my pelvis and SI joint. Working with a headache specialist has been very helpful, so I was happy a very knowledgeable one is now at Mayo Jacksonville.
A group of International EDS experts met in May and are reevaluating the diagnostic criteria for all types of Ehlers Danlos Syndrome with the results to be published Spring 2017.

colleenyoung

Posted by @colleenyoung, Sun, Jul 31 at 6:25pm CST

Nice to get to know about about you Lisa, and your family history with scoliosis. Who is the specialist at Mayo Jacksonville that you're working with?

You might also be interested in the discussion going on in the Chronic Pain group called "Scoliosis and Chronic back pain" https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/ Here you'll meet other members managing scoliosis, like @detzler @sauwoon8 @mieke @ruben130476 @safetyshield and @disgusted

You sound very up-to-date on the research related to Ehlers Danlos Syndrome. Having update diagnostic criteria will be welcome for the treatment of this relatively rare disorder.

lisafl

Posted by @lisafl, Sun, Jul 31 at 7:40pm CST

Thanks! I see Todd Rozen in Neurology

mieke

Posted by @mieke, Sat, Mar 5 at 12:23pm CST

Does someone with adult scoliosis in this group have experience with Schroth therapy?

colleenyoung

Posted by @colleenyoung, Sun, Mar 6 at 12:35pm CST

@mieke, I moved your question to this thread, hoping that someone here may have experience on Schroth therapy to share with you. I'm also tagging @jenkob and @suee who may have thoughts to add.

mieke likes this
mieke

Posted by @mieke, Mon, Aug 1 at 3:14am CST

Thanks, Colleen. My orthopedic doctor says the therapy has no influence on the Cobb's angles (maybe it has an effect on pain levels and muscles problems/well beiing), but in the book about Schroth therapy I read something else.

alannaj

Posted by @alannaj, Fri, Oct 28 at 3:55pm CST

Hi there, my name is Alanna, and I'm a 34-year-old woman who was diagnosed with scoliosis at the age of 15. In the first years following my diagnosis, I was advised by both my family doctor and an orthopedic surgeon that my scoliosis should not cause any pain, and that it shouldn't interfere with my functioning or with leading a normal life. Unfortunately, over time that counsel has proven to be anything but accurate. Throughout my late teens and my twenties, I felt mostly okay. My gait felt awkward due to the unevenness of my hips, and I felt some back pain while exercising, but I was still ABLE to exercise and was pain-free most of the time. Since I turned 30, though, things have changed dramatically. I now have burning pain in my back when I sit for an extended period, but the worst part is my lower body. My right hip juts out so unnaturally that the angle from my hip to my knee is very steep and puts a ton of pressure on my knee. Same with the angle from my knee to my ankle. My right leg aches and throbs incessantly; all of the muscles are extremely tight (I feel like I am never able to stretch them out to the point where they feel close to normal), and my joints throb. I know some people find that walking helps alleviate their scoliosis pain, but for me, being on my feet (anything that puts those unusual angles between the joints of my right leg into play) in any form, be it standing, walking, running, climbing stairs -- all of it makes the pain worse. This has meant that my once active lifestyle has become very circumscribed. I can't go for walks; I tend to want to avoid standing activities I enjoy, such as cooking; going out to run errands feels like too much bother because of the pain I know it will involve . . . I end up staying home, isolated, much more due to my pain. Even inside the house, I'm more likely to be lying down than in any other position, since sitting and standing both hurt. As I mentioned, I am only 34. The prospect of this reality persisting for the rest of my life is very difficult for me to accept. Because of my inability to take part in any kind of weight-bearing activity, I am especially concerned about loss of bone density and risk of osteoporosis as I get older. Doctors still tell me that scoliosis shouldn't cause pain, leaving me feeling very stuck and longing to find someone who can help me. I know surgery can be quite risky, yet I feel I'd be willing to try almost anything to regain some of my lost mobility and reduce my pain level.

safetyshield

Posted by @safetyshield, Sat, Oct 29 at 4:00pm CST

alannaj I have been living with scoliosis my whole life without the pain (except if I sit to long than it get uncomfortable but once I put a pillow on my back I feel fine) In fact I didn't know I had scoliosis until one day I looked in the mirror and notice this unusual curve to my hip. If your orthopedics doctors still say that there is no reason for the pain. Maybe you should look further to what other ways may be causing you the pain. I realize that your scoliosis is the most obvious answer but maybe it is not the answer now. I suggest going back to your main doctor and explore other causes. At this point you are obviously at an impass and exploring other areas may help.

kanaazpereira

Posted by @kanaazpereira, Sun, Oct 30 at 2:28pm CST

Welcome, @alannaj; chronic pain can be so frustrating and debilitating!

You might be interested in the discussion going on in the Chronic Pain group called "Scoliosis and Chronic back pain"

http://mayocl.in/2eoHr4z

I'm so glad you've already met @safetyshield and @rareeby. I'd also like to introduce you to @vickiekay, @kathyv, @edieguinn, and @amberpep, and hopefully they can offer more insight into scoliosis and related pain.

Have your doctors suggested you seek a second opinion, or surgery? Have they recommended other tests to rule out pain from scoliosis?

rareeby

Posted by @rareeby, Sun, Oct 30 at 1:36pm CST

Is the definition of scoliosis still a 20 percent discrepancy from a straight line? This medical definition may have kept me from knowing that my estimated 10 percent discrepancy was likely related to a life-long tendency to pull muscles, joint stiffness especially in my lower back, with more frequent injuries from accidents and over use on just one side, from head to toe. My first symptoms were in adolescence, beginning with a stiff and sore back, a maintenance issue that I minimize with stretching (yoga and pilates), swimming, and sleeping on my back with my knees elevated. In college (and again in my forties with an MRI), doctors measured my leg length, but found no discrepancy. In my thirties an orthopedist recommended PT and balancing my genetic flexibility with strength building exercises. Swimming, aerobics (low impact), and lifting light weights helped to "straighten" the "short" side. My fifties brought yoga to my work place, and a traditional form of Pilates that actually worsened back pain. [Only in my sixties, when I again tried Pilates, and an evolved method of teaching, in addition to yoga, did I find that Pilates helped.] Also in my fifties, an orthopedist expressed surprise that I did not know about my curvy spine. He showed me an x-ray of my back and what I describe now as a "minor" scoliosis, about ten percent. Over time, I understood that this "shortened" side, is the same length as the other side, but appears shortened because of a curvy spine that tilts body parts above and below, resulting in a "curvy" alignment, not just a curvy spine. One measure for me as to how well I am managing to maintain the alignment of my body parts, as straight as possible, and the flexibility of my joints and the strength of my muscles, is standing with flat feet, bending my knees halfway, and observing whether my knees are in the same place with respect to my feet, or if one is turning inward -- it could be outward for someone else -- it just depends. And even if your knees are in the same place with respect to your feet, as mine are now, consider whether you feel more pressure on one joint or another. Hope this helps just one other person.

edieguinn

Posted by @edieguinn, Sun, Oct 30 at 2:52pm CST

Sounds like your plan is what I do. My doctor also told me that he thought I wouldn't be able to stand as straight as I do. Exercise and flexibility is certainly the key

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amberpep

Posted by @amberpep, Sun, Oct 30 at 3:17pm CST

I don't know about the 20% discrepancy. When my daughter would see her Orthopedist, he held a tape measure onto the back of her head and let it drop straight down to see if there had been any change. Fortunately, thanks to the German P.T. there was not any .... she was right on the borderline of getting the Herrington Rods. He said that once she was fully grown and her bones had stopped growing at the bone plates, she would be in the safe zone. That seems to have held true for her. She has no pain, at least that I know of, regarding the scoliosis, although from the side and the back you can see it .... just not from the front. Nowadays they check kids for that in 4th grade.
abby

suee

Posted by @suee, Sun, Oct 30 at 3:24pm CST

Have any of you had the surgery with the Harrington rods? I did in 1973, age 16. My spine is almost totally fused. Having no pain, just discomfort, especially with digestion and poor posture due to the fusion. (I still have some muscle imbalance and "twisted" ribcage), not repaired with surgery.

safetyshield

Posted by @safetyshield, Sun, Oct 30 at 4:37pm CST

I am 61 and never had the rod nor do I remember ever having that approached to me

rareeby

Posted by @rareeby, Sun, Oct 30 at 4:05pm CST

Hopefully you will have lots of replies, but if not, I do know of a man born about 1970-73, who also had this surgery; when I last saw him it was several years ago, and he seemed to be doing quite well in both his life and career.

lynettegable

Posted by @lynettegable, Sun, Oct 30 at 5:38pm CST

I can't find anyone either hoping will on this site as I've experienced a lot of problems. Plus I have hip dysplasia on that leg plus a tronchanteric fracture when the rod was removed due to infection. Tried to fix it with plate and wires have now broken all wires and never healed

amberpep

Posted by @amberpep, Sun, Oct 30 at 8:26pm CST

Hi Lynette .... I don't want to poke my nose in where it doesn't belong, but it sounds to me like the care you have received has been less than good. I don't know what your situation is, but if you're able, you might want to consider going to a teaching hospital .... Mayo would be excellent, Cleveland Clinic, Johns Hopkins ...... you could do some research on what would be closest to you. I strongly encourage you to get another opinion from people who really have the latest research and techniques available. I can't imagine what having broken wires inside me would feel like. Please keep us posted.
abby

amberpep

Posted by @amberpep, Sun, Oct 30 at 8:33pm CST

SueE. ...... if you had the Herrington Rods, I don't understand why your ribcage is twisted. It was my understanding that the rods were placed in early enough so that the twisting didn't happen. Just wondering out loud.
abbt

lynettegable

Posted by @lynettegable, Sun, Oct 30 at 8:50pm CST

I actually ended up at Mayo. They saved my life and my leg. Surgeon that did original sugery not at Mayo wouldn't take first knee out by time i got to Mayo i was really sick. VRE and MRSA and my immune system really messed up. They tried everything but my body was like a sponge with infections. Thats why they dont want to put in a hip or other knee. They gad never had a rod get infected with a fusion of this type and the rod had been in for 9 months before it got infectef.

amberpep

Posted by @amberpep, Sun, Oct 30 at 8:57pm CST

Oh my, you really have been through it. You must be in pain 24/7. Do you feel those wires poking at you? How is life for you? Are you able to do the things you want/need to?
abby

lynettegable

Posted by @lynettegable, Sun, Oct 30 at 10:10pm CST

I do have constant pain and an tired of taking pain meds. I do have an appt this week at Mayo pain clinic so praying they can have some suggestions. Would be interested in a pain stimunlator they put in your back but they are afraid to because of my high risk for infection. I have had 13 different ones. They send me for testing my immune system but nothing showed up

lynettegable

Posted by @lynettegable, Sun, Oct 30 at 10:12pm CST

I have a lot of limitations but thankful i can do sime things

suee

Posted by @suee, Mon, Oct 31 at 1:21pm CST

In response to the question about my "twisted ribcage"....well, it is for real! The rods were not put in to stabilize anything other than the fused spine during the fusion and healing process only. Back in 1973 they did not even consider what to do with the rib problem. I believe in the years since then, they are "fixing" that twist as well during surgery. BTW, my before surgery curves were quite severe.

kpete65

Posted by @kpete65, Wed, Nov 30 at 12:08am CST

Has anyone started falling due to their scoliosis?

safetyshield

Posted by @safetyshield, 6 days ago

I use crutches and have had scoliosis all my life and was never told by my doctors that my falling was contributed by my scoliosis but now in my 60's I do find that my balance is off and when I spoke to my doctor he still does not contribute the falling to my scoliosis

kpete65

Posted by @kpete65, Wed, Nov 30 at 12:13am CST

Can scoliosis contribute to digestive issues like diarrhea?

safetyshield

Posted by @safetyshield, 6 days ago

KPETE65 I have digestive issues and have see a gastroenterologist who has never linked my scoliosis to getting digestive problems

barbara94

Posted by @barbara94, Wed, Nov 30 at 12:32pm CST

Well I am NEW to this site, but finding it is a Godsend! Diagnosed w/ S curves, scoliosis at age 12, and fused top to bottom, with bone from my hip, no rods. Until age 55 I led a VERY active,healthy life playing competitive tennis and boating with my husband. Then doc said I needed a total hysterectomy. I asked for minimally invasive; he said he would opt for open, more invasive. How I regret that! 6 weeks of reclining to recover, losing core muscles, and I began having severe back pain that has continued since...13 years!.....sometimes excruciating. MRI indicates a pseudarthrosis....translated-"failure of the fusion." The radiologist points to the spot where the nerve is impinged. Tried neural root ablation and was SO hopeful, but to no avail. Have consulted with many docs all over U.S. Surgery prognosis is 50/50 and could end up much worse. Tried P.T., massage, facet injections, prolotherapy, you name it! Now on Fentanyl 100, Oxycodone15 and Cymbalta 60. Now the DEA is pressuring my pharmacy to refuse dispensing meds due to substance abuse! Not mine, but abusers. My pain mgt doc describes me as her most compliant patient! So the only thing that helps me play with four grandchildren is in danger of being denied! All info appreciated! Including what helps YOUR PAIN. Thanks much! Barbara

rareeby

Posted by @rareeby, 6 days ago

Hi -- my hysterectomy was related to other surgery, and was performed in a closed operation with a da Vinci. I was up and walking within 12 hours, and actually walked out of the hospital, much to the distress of my nurse who was trying to find a wheelchair I did not need. This was far less incapacitating than any other surgery I have experienced, and it was the only "major" surgery, other than childbirth. I chose this surgeon, who chose my hospital, after six months of research (in 2008). He was one of five doctors I interviewed in as many hospitals, three of them women, and he was the furthest from my home. One of the women I interviewed recommended an open surgery; she was not trained in closed surgeries, said she had not had time to be trained, and did not recommend one versus the other. Now her hospital is trying to advertise itself as the center for such minimally invasive surgeries! If I were required to have the same surgery again, I would choose the same doctor, and again a closed, minimally invasive surgery, but I would opt for a larger hospital, not the regional affiliate that he thought I would like better because I could have a private room. In all, I made three trips to see him, including the surgery. My only regret in choosing a surgeon and hospital so far from home, was using a public restroom less than 24 hours after surgery. Next time, I would stay another day before returning home.

At the time I was unaware that my chronic back pain was related to a mild scoliosis (

edieguinn

Posted by @edieguinn, Wed, Nov 30 at 12:39pm CST

Have severe scoliosis-76 degree curve in lumbar area. Also spinal stenosis and nerve damage in my legs caused by the spine. Surgery isn't an option for me. I also have osteoporosis. Have avoided pain meds. I have script for percoset but Leary about using it. I just do what I can on a given day. I don't plan too many things. Distraction is the best for me. It's not easy but this is something I have to live with. I see myself eventually in a wheel chair. Doing the most I can, while I can which for most people isn't much. Stay uplifted. Don't let depression sink it

amberpep

Posted by @amberpep, Wed, Nov 30 at 5:28pm CST

As I read all of these stories I realize how very blessed my daughter was when her Pediatrician discovered the scoliosis she has (large "S"), sent us to a good Ortho. who worked with a woman from Germany who was an expert in P.T. for that. My daughter did those exercises 2x a day (there were 10 different exercises) from the time she was 9 or 10 until she was 18. She still has the S, but just as he told us, once her bone plates stopped growing, it would no longer change. She was right on the edge of rods or no rods, and he opted for the exercises to strengthen her stomach and core.
I wish so many of you who are suffering with this would have been able to have access to this type of care. I can only imagine how painful and uncomfortable it is, and I'm so sorry.
Blessings,
abby

safetyshield

Posted by @safetyshield, 6 days ago

amberpep I was given PT until I stopped growing but no doctors or PT ever made my issue of my scoliosis

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