Scoliosis - Introduce yourself and meet others

Hi everyone -- I see that there is a Video Q & A on Scoliosis today that you might want to watch.
https://connect.mayoclinic.org/webinar/video-qa-about-scoliosis-1/?date=1561680000

Hi, I'm 72 years old still fit and trim. Was a 3-5 mile daily runner until spring 1999. Experienced numbness in left cheek that eventually spread throughout my body...pins and needles, tearing flesh feeling, partial paralysis of my legs and intense, round the clock solid pain in my tailbone area. I had 3 epidurals, 2 guided to no effect. I spent several years seeing different physical therapists and chiropractors. I tried TENS but it was no relief as was the case from a not-so-good acupuncture western doctor at a pain clinic. 1600 mg of Neurontin & 10 mg of Flexeril at night for 9 years allowed me to recover some strength at night to make it through pain filled days. A orthopedic doc, who by coincidence, I had seen the year before for my first back issue, said I had a dramatic deterioration in my discs, thus the degenerative disc and osteoarthritis disorder. Nothing was ever said about the pins and needles, burning, numbness and partial paralysis in my arms and legs. Those symptoms gradually faded with the meds and some sleep but the tailbone was the predominant issue. I retired early 8 years after onset and reduced my meds in favor of ibruprofen and other stretching and exercises. Gradually, what I experienced as cold feet crept up my legs as pins and needles and burning. I have refused to go beyond 600 mg of Neurontin at night and 5-10 mg of Flexeril except on a brief occasion when I got a diagnosis of Small Fiber Neuropathy. Three years ago, I had a compression fracture in my thoracic spine when picking up my 85 lb. dog, something I used to do regularly when he was 100 lbs. I was given a diagnosis of Osteopenia. By the way, I read one article on the web that Neurontin leeches calcium from the bones. Two years ago I was told that I have scoliosis which seems to be worsening. I do spend too much time sitting at the computer which is not good for this condition but what else is there to do that keeps me mentally engaged.

My question to the group, is there anything that can be done to bring the spine back into alignment? Is there a brace or harness or something one can wear to accomplish this?

Hello. I recommend seeing a neurosurgeon. I suffered with similar symptoms, including scoliosis. I was able to see a top notch surgeon at Barrows Brain & Spine last year. He straightened my spine via fusion and a lot of disc work. Today. One year later, I’m pain free. The fusion creates some restrictive movements, but worth it! Best of luck to you. I had the surgery at age 66.

Thanks

Great post and best wishes...

Hi all! I am almost 53 years old. I am introduced myself to the group. I had a spinal fusion with a Harrington Rod in 1980 at 13 years old. I had back problems, anxiety, fibromyalgia through the years but managed to raise 4 children, work, get a BA in psychology and lead an active life. The past few years since menopause my symptoms got worse. The past 5 months I am in extreme pain and got diagnosed with sagittal plane imbalance with flatback, forminal stenosis, broadbase osteophyte complex, ddd, slipped disc, bulging disc etc... I work as a design consultant in a fast paced sales environment on concrete flooring. My knees, hips joints and of course my back gets worse by the day. My DRs say to suck it up but my performance is failing and I’m getting no sleep and am depressed. I can’t go broke but can’t continue this type of work. I used to sit and it was just as hard because I was stiff.

I don’t tolerate meds too well. GAbapentin makes my breathing weird and flexeril is iffy too. How does everyone handle life in pain? My only option is finding a specialist in revision surgery that’s super risky. Thank you for any information.

Good afternoon and a huge welcome to you @nicoleo. I am so glad you found Connect. You have had some very rough times. I am amazed at how much you have accomplished.

You are the same age as my daughter. I had a similar back surgery when I was 25 or so. Like yours, that surgery led to others. I was in a carpool and when it was my turn to drive, I let someone else drive my car so I could lie down in the back seat. When the pain became very bad and I was in my office, usually in the afternoon, I would just lie on the floor during staff meetings and sessions in my office. How did you get through the day? So I handled pain at that time the same way that you have been handling pain.

After a while, you can no longer suck it up. You mentioned that your doctors told you that. Under what premise about your health conditions are they saying that? What do your doctors tell you about your future? You have a lot of life to live.

So I gave in and had revision surgery when I was 37. That one worked and is still working today. The key factors.....I became very active.....yoga, walking, hiking, rollerblading, sailing, biking, even golfing. And I went to a trainer to learn about back exercises which I practice daily. Although the surgeon said I might have to have another "revision" in ten years....I am now 77 and have avoided back pain and another surgery.

You have a very busy life. Do you have help? What ages are your children? Remember, Connect is a group of non-medical folks who have learned to live as well as possible and are willing to share their experiences with others. May you be safe and protected. Chris

My 13 daughter has 55 degrees curve and has been treated with brace. We think about getting the minimally invasive surgery which we don't know much about this yet.

My 13 years old has 56 degrees scoliosis and needs the surgery, we think about the minimally invasive surgery

I wonder where did she have the surgery? Was the minimally invasive surgery?