Supportive Scoliosis Sites

I have found many a night or heck let's be honest early morning, afternoon and or/evening, most of some days, etc where I feel completely alone and like there is no one who understands what I am going through or can relate to my health concerns. You, WE are not alone. There are so many websites out there with support groups, blogs, journals and forums for people going through the same thing as us. Here are a few:

http://www.scoliosisnutty.com/

The above site was originally a blog started by a woman in the UK who has undergone Scoliosis surgery for a severe curvature and created this wonderful site with information, support links, blogs, items/suggestions for pain relief/management, as well as member stories and profiles linking thousands of Scoliosis and back pain patients all around the world!

http://celebrityscoliosis.com/

If you ever think you are the only one with Scoliosis and feel like a monster because your clothes don't fit properly or you notice your physical differences in the mirror each morning, check out the above site. There are so many celebrities and athletes, including Olympians, who have Scoliosis as well. Vanessa Williams and Rebecca Romijn both have Scoliosis. They are generally considered two of the most beautiful people in the public eye and no one would ever guess they live with Scoliosis every day. Rebecca Romijn was actually my idol and muse when beginning Pilates for Scoliosis. She is a large supporter of both.

http://www.dailystrength.org/home

This website is amazing it links a wide variety of people from all over the world with many different ailments, diseases, and medical issues. They are SO supportive and people will start reaching out to you almost instantly after you create a profile.

http://www.scoliosisblogs.com/

The above site highlights different blogs specifically about Scoliosis from people all over the world.

http://www.scoliosis.org/forum/

The above site is another forum that you have to join to add comments to and join discussions. There are an endless number of Scoliosis conversations, threads, and topics being discussed. Almost anything you think you could deal with can be found on this website. If you have Scoliosis, I strongly suggest joining.

Again, networking is key. It helps keep your spirits up and remind you that other people have, are, and will continue to face the same problems. Reach out, ask questions, give feedback and you will be amazed at how much it can help you face your Scoliosis or medical issues.

Hopefully you can find some support, encouragement, and enlightenment if you are searching for it. I know when I am it is always helpful to me.

Always With Karma,

Amanda

Better Than I Used To Be

"I ain't as good as I'm gonna get, but I'm better than I used to be." Kevin took us and our cousins to to the Brothers of the Sun Concert on June 2 and I cried a little when Tim sang that and balled like a baby when he played, "Live Like You Were Dying." It just hit closer to home than it ever has. Very glad it had gotten dark.  Inspirational.

Charlie & Mollica and Kevin & I

Kev & I at Brothers of the Sun Concert. First REAL outing after surgery. Cast and all (removed for photo), you know you love Tim and Kenny if you're casting it up to the third level only 4 months post-operative. It killed me and put me out of commission for about 4 days but I LOVED it!

I have reached 5 months post operative from my multilevel thoracolumbar fusion with instrumentation and osteotomies. A lot has happened in the last 3 weeks. My life has changed in ways I never could have fathomed. I have always been upfront about the fact that I never asked or more truthfully allowed my spine surgeon to explain in full detail what he was going to do during my procedure. I do not handle graphic images (or thoughts) of wounds or surgical images, especially when I am the patient. Grey's Anatomy is fake, and yes I wince during the bloody scenes. So obviously picturing what was going to happen to me under anesthesia with my eyes taped shut, completely naked while being hacked up in front of a room full of people slicing, dicing, and digging strange instruments into my back would send me running for the hills. I would have turned it over and over in my mind until I talked myself out of it or found another excuse to postpone...AGAIN. Instead I simply ripped off that band-aid and jumped in head first.

During physical therapy last week, at Moreno Spine & Scoliosis, I requested copies of all my medical records. After reading them I now understand why medical terminology exists and most doctors generally sound as if they are speaking a different language. If instead of saying, "multilevel thoracolumbar fusion with instrumentation and osteotomies" they said cutting your back from between your shoulder blades almost to your bottom and shredding open all your muscles, tearing the ligaments from your bone, chiseling away at the bone and then cutting and reshaping them to fit into a straighter position followed up by drilling holes into your bones and then placing screws and wires and finally giant metal rods to hold all that in place and covering it with some bone marrow they "harvested" is the word they actually use from your spine, a dead person, and a little artificially created in a lab, people would take off screaming.

I made the LARGE mistake of youtubing some videos of spinal surgery and googled "facetectomy" last night. This is not recommended, personally, for people about to undergo surgery. Actually I don't think anyone should watch it, it's literally the most graphic thing I've ever seen. It's simply unnecessary torture that makes you nervous for no reason. And if you're like me start hyperventilating and making noises I could never imitate. It literally looks like something from a sci-fi film, worse because you know it's real. Knowing that happened to me is SO strange.

I won't lie, I am still in pain all day every day. I can feel the metal in my back, it's indescribable. I do feel better than I did in the beginning, even from a couple months ago as well. Sitting up is just not working for me. I was fused from my T4 to my L4.That's a lot of your spine for people unfamiliar with Scoli language. He saved the last disc in my Lumbar spine, your lower back. Now all the instrumentation and extra weight is pushing on that bulging and slightly degenerative disc AND pressing on some nerve roots and causing occasional numbness and loss of feeling in my left leg along with almost constant sharp burning pain. This is an improvement from the first couple months though. I've been in pain so long now it's almost hard to gauge it.

Was it all worth it? It had to be. My curvature was progressive, degenerative, and causing me a lot of pain and not far down the road more serious health complications had been ignored for 13 years. I will heal. I will not be disabled forever. That simply isn't an option. I was not made to be unproductive. I also am entirely too strong willed and stubborn to allow this to beat me. I'm not going to say I don't break down, get weak and emotionally drained and cry for two hours when I can't sleep in EVER because I am always in pain and never comfortable and can't go to my cousin's engagement party, etc. This is NOT easy. This is by far the single most difficult thing I will ever go through. Unless I require brain surgery and let's get real no one can be that unlucky, not even me. Everything in my life after this is going to be a cake walk. I have completely transformed inside and out. My entire perspective on life has changed forever.

I can walk a little longer, I am free of that terrible cast 75% of the time, I force myself to sit in the living room a couple hours a day, but at 9 pm I am spent. Even reclining at a 45 degree angle in my comfortable king size bed with the Rays neck pillow Kevin got me is killing me. It's ice time.

I have to vent, but I also have to say to anyone with a severe progressive spinal curvature and pain considering surgery the younger the better. I am glad it's done. I am already 5 months out of the woods. Surgery techniques and recovery 10-15 years ago to now has completely changed. ALWAYS get a second and third opinion and research the heck out of your surgeon. Board certified, no malpractice or settlements and if you don't feel comfortable with them and their "bedside manner" keep looking. I did, and it made all the difference.

Parting thought for this evening, ‘Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you.” ~ Mary Tyler Moore

Always With Karma,

Amanda